Foods and friends have had an amazing way of cheering up Nadine over the last few days, even with her general malaise. I honor that her friends cheerfully welcome and support her however she is feeling. In particular, Sylvia, Rafi, and Claire have visited often and been steadfastly there for her, whatever her mood (including leaving if she needs to rest).
Nadine has had intense, urgent cravings for distinct foods, almost all fortunately healthy. When I present them, her radiantly beautiful smile makes it all worthwhile even though I'm not generally known as a passionate or meticulous cook. Lately she's lusted after vegetable broth (the real stuff, made with onion, potato, zuccini, spices etc.). It did my heart good that she chose mine over Amy's Organic Canned Soup, even if my soup took 2 hours. I'm learning to care about cooking things I don't usually bother to make. She's craved potato-cheese puffs, sometimes moaning that it can't be completed within 10 minutes. Asian Delight (a peanut-shoyu sauce with tofu, chicken, or other such things) sends her into ecstasy. She wants things "right now" -- I hear a zillion "When will be be ready?'s", but she's thanked me profusely as well. Being able to make her happy in any way is a beautiful thing.
As for music, Nadine has still been into my playing for her, even if she's hurting or at a low energy level. I've loved creating pieces as well. Today was a long afternoon of it. I attempt to tailor the mood of the music to what I perceive of how she feels, and if she has a specific request either of tune or mood, I'm happy and honored to do it.
_________________________________
On Monday night after Nadine's third of her four Bigg Chemo spinal injections, Claire came over with the DVD Sense and Sensibility. Nadine, at a low energy level, remained on the couch, but she happily watched and giggled over the movie with Claire, eating ice cream and cobbler while she was at it.
That night, I gave Nadine ginger tea and journaled. Nadine was having a hard time with heartburn/acid reflux. I looked up remedies, found several with vinegar, and she tried one with no success. I hung up her laundry and put away her food, then went back to bed.
Monday night was another really hard one for Nadine -- she was restless and uncomfortable again, and panicky along with it. I reassured her it was normal, but I hurt inside. When normal hurts......no comment. Finally I suggested reading a book to her. It took a while to find one, and she fell asleep first.
In the middle of the night she got up again, still restless. After a while, she wanted a snack. Feeling like the mother of a 2-year-old, I reluctantly trudged up with her for a late-night spread of buttered toast and warmed molasses-in-milk. Although I was exhausted, her smile was gorgeous. We held hands and I smiled too. Finally we made it downstairs to bed again.
Yesterday was a hard morning again. Nadine was weak and hurting and seemed to need me every moment. Sometimes she hurt so bad that she could barely verbalize what she wanted, and often I heard grunts.
I got an offer of a REAL treat, being invited to visit Betty and Claire and go for a swim in the lake. Nadine, even in her misery, encouraged me to go for it. She and I went together. I had to borrow Betty's swimsuit, as the one I usually bring everywhere even in midwinter for "just in case" was buried far away (evidence of my divergence from my customary lifestyle). I admired the beautiful lake colors, picked my way over the rocks, and immersed myself up to the ankles. First swim of the summer, and I was no longer used to water under body temperature. Slowly it came back as I sank in slowly, the water "pinging" against my body like cool silver. Finally I "went for it", blissfully swimming strong strokes parallel to the shore, admiring the waves and the feel of my body in a medium I loved. A long while later I paddled towards shore and lay on the soft furry-feeling seaweed mat in the 6-inch-deep shallows, then sat up and watched the shifting gold-and-green water against golden rocks. I returned to land feeling refreshed and happy.
Nadine had a nice time too -- she sat out on the chaise lounge, and I think the fresh air was excellent for her. After my swim, I looked up and Claire, dressed in her crisp "colonial era" costume from work, was visiting with Nadine on the chaise lounge. Later she sat on a stool and prepared green beans for dinner. Dessert was delicious local peaches, and as they can be peeled, Nadine got to eat one. I got another walk into the warm post-dinner night and helped Betty pick blueberries before we drove back and went to bed.
Bedtime for Nadine last night was the worst yet. She had seemed fine, having a snack and resting, but just as she was getting to bed she started to hurt terribly, and she "lost it" and yelled loudly. I helped her as best I could, affirmed how hard it was, listened to her, and encouraged her to breathe deeply through the diaphragm and other such things -- after what seemed like a long time, somehow she finally managed to relax. After that, she got through the night okay. It's so terrible what she has to go through with this.
________________
This morning was peaceful. She craved a potato-cheese puff and I made one again. She rewarded me with a smile. She said to me, "You do so much". I smiled inside and out.
Jessie the nurse came by and drew her blood for "labs". She brought a pair of sterile gloves and taught me how to use them. I dreaded this, klutz that I've known myself to be. Touching my hands only to the unsterile insides of the gloves, and touching the sterile outsides to each other and not my hands, and actually getting the gloves on? Nadine grinned from the couch. I think I know what she was thinking.
I practiced a few times and amazingly I found it easy. It was even fun. Hah!
We were going to met Alice today and look at the apartment we'll be staying in, but Nadine felt too weak to go and I postponed it until tomorrow, when we'll be in town anyway for Nadine's next procedure I'm glad we didn't go, as Nadine had another intense bout of pain after coming back from the bathroom. I spoke with the medical staff. Her blood counts are dropping (expected). Once again, no medical emergency, "just" lots of pain. Everyone there has been sympathetic and wonderful about it. We'll be able to talk tomorrow with Dr. Mullen at clinic -- there may be particulars to be addressed. She did get a prescription for a medicine that might help with the heartburn, that can be substituted for the Pepsid that doesn't seem to be working.
Tomorrow is Number 4 of the BIGG Chemo spinal injections -- after that, "All Done".
Wednesday, July 29, 2009
Tuesday, July 28, 2009
BIGG chemo (Spinal Fluid,, Vein, and Muscle), A New Port, and a Wearying Week
The past week has been wearying. Nadine has often been weak and uncomfortable -- I had to use a wheelchair Friday for the first time to take her from the hospital to the parking garage. I was told this is common even though her blood levels and "Minimal Residual Disease" levels were as desired. The reality of the "long haul" sinks in.
On Monday July 20th, Nadine got a new port (yay!). That morning she felt well enough to go with me to breakfast at Betty's house with Sue, Sylvia, Betty and Claire -- the lake was a perfect pale blue, and we all expressed gratefulness for things that mattered. Nadine was an excellent sport about not being able to eat Betty's excellent breakfast (because of the surgery later on). Food was sent back to be available after she could eat. Nadine was very much up to enjoying her friends.
That afternoon, her new "port" was put in by Dr. Waldman, the head of the department. It was a smaller one than originally, as Dr. Bruckner felt that the need for two accesses (for two medicines at the same time) were no longer needed after she had finished the mega-methatrexate stage. I was concerned as usual that she was waiting near too many possibly contagious people. Dr. Waldman oozed ease, congeniality, and competence.
The IV -- Poor Nadine's arm looked like a battlefield due to the multiple times she had been poked as she had no port of PICC line for weeks. Her veins are small and hard to access, making her the worst possible choice for the port mishaps she endured -- a failure of her first port to heal, and the clot in the PICC line that was installed afterwards and then had to be removed. The nurse had a miserable time putting in Nadine's IV, worsened by the fact that she couldn't drink fluids right before the job was done. Hopefully once the port healed enough, this would come to a welcome end.
The port procedure itself seemed to go without mishap -- I finished some minor errands (that had been majorly procrastinated), and got back just on time for her to be out of surgery. I was listened to, and she was allowed to "recover" in the MRI waiting room, which was normally closed at that hour.
Nadine, sadly, felt low energy and miserable afterwards, and spent much time resting, although she perked up for dinner.
Tuesday July 21st was THE BIG CHEMO, and afterwards Nadine felt THE BIG AWFUL. She had cytarabine and methatrexate injected into her spinal fluid (via spinal tap), asparaginase into the muscle in the front of the leg and, scary of scary, vincristine and doxorubicin (plus the dex that protects her heart form the dox).
This "round" of chemo boasted FOUR SPINAL TAP INJECTIONS over a period of two weeks -- the only scheduled bout of this. I watched Margaret, the expert nurse practitioner, insert the needle between Nadine's vertebrae, removed some clear spinal fluid (which dripped out slowly), and inject this day's batch of meds into the spinal fluid.
The big scare, however, was the vincristine and red doxyrubicin injected into a peripheral vein rather than put in via port or PICC line. Vincristine and doxyrubicin both cause chemical burns if they leak out of a vein, which is why the docs try so hard to have a port or PICC line to put them in -- Nadine had neither. I still reflect on the seriousness that chemicals that could burn the nurse's skin are now routinely injected into Nadine's veins.
It was imperative that an excellent fresh IV be placed, only neither nurse could find a decent vein for it -- they poked and poked. I was so upset hat I had to sit down. Just as they were prodding her cold little foot to find a vein with no success, one of the nurses exclaimed that she successfully gotten a needle into a vein on her arm (!) and the two nasty corrosive medicines were slowly and successfully injected with everyone's eyes on the site -- it felt like agony to watch. But -- No leaks! Success! Dr. Karen Powers, one of the participants, fumed that if the doc checking Nadine's port objected to using it the next Monday, someone should show him Nadine's arm.
After it was over, I was so devastated about how miserable Nadine had been feeling recently, plus this IV ordeal, that when Carol,the CURE (cancer family support) lady came over and asked how I was doing, I suggested a private space, pulled the curtain, and collapsed into her arms. She was through leukemia with her son, who is now 35; she understood.
Margaret the nurse-practitioner came over, answered questions, and announced that Nadine would have a new antibiotic for about 2 years to protect her from pneumocystic pneumonia, which is harmless to healthy people and would be extremely dangerous if Nadine got it. Yet another med in the arsenal.
After Nadine's hour-plus required recovery period, she was so weak that she had to be brought downstairs in a wheelchair for the first time ever. I won't even describe how I felt feeling wheeling my crumpled daughter down the hall, into the elevator, and off to the parking garage.
After we got home, Nadine was feeling so awful that she couldn't get out of bed, didn't want to do anything, and moaned a lot -- this went on (with a few respites) for days, and was very hard to face. Sadly it's part of the norm, I learned -- wretched, saddening, awful, and surrealistically normal.... The world turned on its head.
It was older brother Raymi's last night at the house, and he was able to tempt Nadine into a game of Dominion (the new game he had brought over) downstairs with him and Sylvia. I opted out, feeling they could use some mommy-free space, but I joined in the last game, during which Raymi sat with his back to the head of the bed and Nadine sprawled in his arms -- the two looked blissful.
Wednesday was another slow-Nadine-day. Raymi left around 4PM to return to Pittsburgh, taking a half gallon of glaring red "Fruit Punch" flavor Gatorade for the journey. Come to think of it, the red color and translucency of the Gatorade pretty much matches the doxyrubicin chemo medicine.
I wanted to cook a meal for the Klassens and us -- I chose one of Nadine's favorites, "Asian Delight", and was happy that everyone liked it. Nadine's appetite was excellent for a change. However, after dinner Nadine started to feel wretched again, and my mood followed suit.
On Thursday Nadine felt miserable for most of the day, again. Jessie the visiting nurse came over and actually succeeded in getting an easy blood draw. I'd hoped to "drop in" on the RAHA homeschool park day with Nadine, but there was no way. She perked up for a while, going out to Goodwill with Sylvia to help orchestrate Sylvia's "going away" wardrobe, a fun girl activity. I prepared another dish (potato puff) for the family again, and Nadine ate fabulously.
I made a few "catch-up" calls -- to James Willey (from the composition contest) to make sure that Nadine wasn't missing something for the performance of her trio by Chamber Music Rochester. I called Eastman about the late bill for last spring, and the registrar announced that both of us had been given full scholarships retroactively for last spring -- this was an enormous surprise!
I also blurted out to James Willey that I'm considering taking my own music composing seriously, and got some tips as to how to get started. The scholarships have prodded me into believing that maybe I can do it -- they feel like an affirmation not only for Nadine but for me as well.
Around dinnertime, Nadine felt well enough to nag me to let her go to the contra dance. Although I was happy to support other thigns, I didn't think it was the best idea -- for one thing, if she caught anything in the middle of the "Big Chemo" it could create a "Big Mess", and also she was collapsing pretty easily. However, I didn't have to push it this time -- as suddenly as she'd perked up, she suddenly collapsed again and rushed to the couch to lie down. At least there had been a spark. Oh, I'd love to just see her dance again.
Things worsened -- Nadine, lying on the couch, asked for the bucket. By the time I went downstairs and brought it up, she'd lost her dinner into the bathroom sink. I held her head while she finished what she had to.
One affirming thing was that I was able to do music for her. She was feeling terrible and asked for me to improvise, and I created something for her -- this time getting into three-apart gentle music, and eventually easing into the same gentle tone but with rhythms of 7 and 5 beats. It was very, very affirming to be able to serenade Nadine with something that would make her feel happy. She relaxed and rested up. I hope to keep working with some of the pieces I created. It's amazing that the two of us both love music this way.
I did something stupid that night -- I accidentally poured too much cayenne in a concoction I use to "clear out" my system and felt so sick that I actually called "Poison Control" to figure out how to neutralize the irritation. Amazingly, they had the answer -- take some high-fat milk or yogurt, and follow up by spooning in a small amount every few minutes until the pain stops. I could see the humor in all of this, especially given Nadine's condition. I apologized for what I was worried was a frivolous and the lady said it wasn't absurd, as I was hurting. The remedy worked fast!
I had to get Nadine up for her night-time meds, and after that we went downstairs for bedtime. She was feeling awful and wanted me in a sad weak voice to stay by her bed. I stayed and watched her -- she looked like the classic stereotype of a "cancer patient", frequently lying curled up. I pulled up a chair by her bed, and gave her the option of coming to bed with me -- she said she was worried she'd fidget and stayed where she was. I remained by her bed, holding her hand, and eventualloy laid my head on her bed and rested up, finally returning to my own bed.
On Friday I stayed in bed as late as I could get away with and got us quickly out for NAdine's next BIGG chemo-in-the-spinal-fluid injection. She weighed in at 104 pounds -- she'd lost weight, but she'd also lost last night's dinner and wasn't able to eat or drink before the spinal procedure.
Beth Schemp, the wound specialist, came up (we'd planned this), removed the wound dressing, and prounced the top wound as being healed and the bigger bottom one doing well. She irrigated it and sopped up the irrigant with gauze, while Nadine grimaced. I asked if a new bottle of saline needed to be used for each dressing change and Beth emphaically said yes, eventhough Jessie the visiting nurse had said it wasn't needed. I'll go with Beth's opinion, as it's the more stringent and I don't want to take chances.
Nurse Laurel arrived to put in Nadine's IV -- she tried and tried and tried and tried and couldn't access a vein. Poke poke poke poke. Miserable again. It didn't help that once again Nadine couldn't hydrate herself (drink) before the procedure. Finally another nurse arrived and "got it". We arrived at the treatment room, and Margaret "did the honors" -- the stuff was injected into her spinal fluid and that was that.
Round Two of The Bigg Spinal Fluid Chemo was over.
If the port was approved for use the following Monday, that would be the end of the IV misery.
It took Nadine an extra long time to recover from the procedure this time, and I ended up taking her back to the car in a wheelchair, with her feeling awful.
We went to Eastman to pick up an alto flute for NAdine to use in case she can go to the National Flute Association convention in August, for which she auditioned and won the position of First Flute in the High School Flute Choir. First Flute means she came in "First" of all the auditioners, and it's a huge honor. I had to go up alone to get the flute, as she didn't feel up to trying it first. There was wonderful music outside the building, and I stopped a little -- Nadine called me on the cell phone to say she needed me at once. Realizing I'd temporarily lapsed into my "old self" habits, I returned quickly to the car, and took Nadine home.
I took a walk in the woods behind the house and waded in the stream -- I'll have a separate new post on this amazing experience.
There was a slow-approaching thunderstorm which reached us crashing loudly even when the sky looked blue, finally giving way to clouds and a brief heavy rain, followed by a double rainbow. It was beautiful.
I went in to tell Nadine, and was sad that she didn't want to come out and see it.
Barry arrived that night, and I prepared another potato puff. I felt overloaded with three days of cooking and doing all the clean-up. Nadine couldn't help, and Barry needed a break when he was here. I wanted to practice piano and type my journal.
I felt wistful -- Ashokan Music and Dance Camp was starting that Sunday, a usual highlight of Nadine's and my year. Ashokan, where Nadine and I had met wonderful people, and immersed ourselves totally in traditional music (and its modern wrinkles), taking many workshops, and participating in dances, jam sessions, the works. The mutual support, the love, and the beautiful country setting were perfect. This year we weren't going. I sat outside and called a friend who attends and also works there, and he said he'd make an announcement so people didn't think we were "blowing off" the event and the community.
Nadine wanted me to create some music for her again as she lay on the couch, and it was my complete pleasure and honor to do so. Once again, she relaxed.
Late that night, Nadine needed me again, and I sat late by her bedside before she finally could rest.
On Saturday, Betty came over and we had another nice walk, including talking about what we wanted to do after the kids left home. Claire is leaving for college next month. I'm not quite sure what I'll do either -- I'm pretty sure I know what I want, but don't know how I'll get there, or if I'll have the discipline and/or gumption. Composer, writer, musician, friend, beachcomber, swimmer, other. Barry has his own goals.
We returned and Betty quilted the quilt she's making for Claire in honor of her departure, and I folded the dishrags I had washed and dried for Sue. It's a nice luxury to do this kind of task. Imagine -- a luxury to do housework.
Later on Nadine felt awful again.
At one point I created some music for her while Barry, in a mask because of a possible cold, held her hand and looked lovingly at her. It was a long interlude.
I spoke with Alice Kanack -- she had offered me the use of the apartment at her music school, and we made plans for me to move in this week. Imagine -- getting to live at a music school!! She's been wonderful to me and Nadine from the first time she visited us at the hospital. She orchestrated music students (and others) creating a live CD and crafts for Nadine, brought me a lovely shirt, arranged for Nadine's trio to be performed at her school, and is becoming a treasured friend.
Clouds built up like the night before, thunder approached, it got heavier, and it poured. Barry's Cabriolet got a puddle. We had walked just before the rain, and were sitting on an outside bench under the trees when it started. Barry went back inside.
It rained super-super-hard like a faucet in the clouds turned on full blast over my head. I ran out into the full rain and flung my head face-up towards the deluge, relishing the feeling of rain pouring hard on my face. I arrived back in the house wet, even if I'd been out in it for less than a minute.
I was exhausted and went to bed around 9:30.
In the middle of the night I felt a scuffling and Nadine appeared in bed with me, her small voice saying she was tired but couldn't rest. She curled up and I cuddled her fuzzy head. She seemed very young. My "mother" feeling promptly returned with no prompting on my part, resembling the way it was when Nadine was little. I was able to "tune" well, and soon she relaxed. She stayed there for the night and we both got a decent night's sleep.
On Sunday morning about 11AM the week-end visiting nurse came to draw Nadine's blood for the Monday chemo session. I had asked for an IV expect. She was stodgy, competent woman who quickly found a vein, and that was that. Barry and I took a walmk in the muggy weather, all the way to Lake Avenue and back. In addition to talking about Nadine, we also talked about what-we-wanted-to-do-when-she-left-home.
Later in the day, I sat on a rock in the sun outside the house, and lay back to sun my face. The warmth brought a familiar feeling of "me-ness" that had been largely put aside since May. I realized it was the first time I'd put my face up into the warm sun since Nadine's diagnosis, and here it is midsummer. Summer is my favorite time of year. I gratefully allowed myself the pleasure of the company of my cherished friend the sun.
As Barry was leaving soon, I had to sort out what stuff Barry should bring back to Hinsdale. My car had been the repository of just about everything I didn't need at any given moment. It was piled high with things brought from home plus things acquired while here. I felt clumsy and messy, but somehow managed to get some obvious non-necessities off.
Nadine had requested that I do a food-shop for some specific goodies. Barry was ready to leave. Nadine settled on the couch -- by then the Klassens were home and packing for their large bike excursion, and everyone was comfortable with Nadine over there, so he left. I got Nadine's requests, provisions for the week, and some requests from Sue; then I returned and help her take parsley leaves off parsley stems for dinner, while Nadine enjoyed being in the company of the rest of them. Their family packing session was a harmonious flurry of activity, and by the end of the evening the scattered clothing and provisions congealed into well-stuffed panniers ready to be mounted or hung on the two tandems that the four of them would ride on. I do treasure their family. Dinner was a summer borscht with hardboiled eggs, and Nadine ate well
Bedtime, and Nadine and I each went to our beds.
In the middle of the night, Nadine returned to my bed. I soothed her and she rested. After that, I got up and took a nice bath and shower before rejoining her. Again, she has seemed young.
____________________
On Monday morning July 27th, I got up barefly on time to go upstairs, hug Sue, and race off to the hospital with Nadine, where we'd find out if Nadine's port incision had healed enough for it to be used. Yay!! It could be accessed! The end of an awful era. For some reason, Nadine chose a warm wool hat knitted by her friend April, even though it was muggy and warm out. I realize her hot-cold perceptions are strange these days, and said nothing. We went to the 6th floor pediatric clinic, and Laurie, the first nurse-practioner we'd had, was on duty.
I was concerned if Nadine's tired-and-dragged-out-ness was due to the "normal" course of chemo and disease or if it signaled an extra concern. Laurie said it was "normal" for the course. Admittedly miserable, but normal. Later, Eric the social worker said it might persist for a long time, perhaps the 30 weeks of "consolidation", not a fun prospect. He said some people have to just rest up.
Eric also said that sometimes a young person will act or seem younger than their age at times. I was relieved to know this, given how Nadine was feeling. He also said it was a good thing that Nadine was able to show how she felt, even if she didn't feel "up". Maybe there is something positive about it after all. It is a scary, painful, miserable illness, after all.
I told Eric that he has a heart like a mother's lap -- there's always room for whoever needs it. He said he'd remember that.
Nadine was still feeling weak, and afterwards I had to wheel her down to the EKG room. She was getting an ultrasound "Echo" cardiogram, which was routing to make sure the doxyrubicin wasn't damaging her heart. It was fascinating to see the insides of her heart, the atrium and ventricle, the tissue moving and the blood moving. I asked how the device could focus on the heart and not on the rib cage or spinal cord, and she said it focused on things that moved. That would be the heart and the blood.
After this, Nadine wanted to go STRAIGHT home, and that's what we did. We were back in the house around 4PM.
So much for a "summary" of what went on over that week. More later.
On Monday July 20th, Nadine got a new port (yay!). That morning she felt well enough to go with me to breakfast at Betty's house with Sue, Sylvia, Betty and Claire -- the lake was a perfect pale blue, and we all expressed gratefulness for things that mattered. Nadine was an excellent sport about not being able to eat Betty's excellent breakfast (because of the surgery later on). Food was sent back to be available after she could eat. Nadine was very much up to enjoying her friends.
That afternoon, her new "port" was put in by Dr. Waldman, the head of the department. It was a smaller one than originally, as Dr. Bruckner felt that the need for two accesses (for two medicines at the same time) were no longer needed after she had finished the mega-methatrexate stage. I was concerned as usual that she was waiting near too many possibly contagious people. Dr. Waldman oozed ease, congeniality, and competence.
The IV -- Poor Nadine's arm looked like a battlefield due to the multiple times she had been poked as she had no port of PICC line for weeks. Her veins are small and hard to access, making her the worst possible choice for the port mishaps she endured -- a failure of her first port to heal, and the clot in the PICC line that was installed afterwards and then had to be removed. The nurse had a miserable time putting in Nadine's IV, worsened by the fact that she couldn't drink fluids right before the job was done. Hopefully once the port healed enough, this would come to a welcome end.
The port procedure itself seemed to go without mishap -- I finished some minor errands (that had been majorly procrastinated), and got back just on time for her to be out of surgery. I was listened to, and she was allowed to "recover" in the MRI waiting room, which was normally closed at that hour.
Nadine, sadly, felt low energy and miserable afterwards, and spent much time resting, although she perked up for dinner.
Tuesday July 21st was THE BIG CHEMO, and afterwards Nadine felt THE BIG AWFUL. She had cytarabine and methatrexate injected into her spinal fluid (via spinal tap), asparaginase into the muscle in the front of the leg and, scary of scary, vincristine and doxorubicin (plus the dex that protects her heart form the dox).
This "round" of chemo boasted FOUR SPINAL TAP INJECTIONS over a period of two weeks -- the only scheduled bout of this. I watched Margaret, the expert nurse practitioner, insert the needle between Nadine's vertebrae, removed some clear spinal fluid (which dripped out slowly), and inject this day's batch of meds into the spinal fluid.
The big scare, however, was the vincristine and red doxyrubicin injected into a peripheral vein rather than put in via port or PICC line. Vincristine and doxyrubicin both cause chemical burns if they leak out of a vein, which is why the docs try so hard to have a port or PICC line to put them in -- Nadine had neither. I still reflect on the seriousness that chemicals that could burn the nurse's skin are now routinely injected into Nadine's veins.
It was imperative that an excellent fresh IV be placed, only neither nurse could find a decent vein for it -- they poked and poked. I was so upset hat I had to sit down. Just as they were prodding her cold little foot to find a vein with no success, one of the nurses exclaimed that she successfully gotten a needle into a vein on her arm (!) and the two nasty corrosive medicines were slowly and successfully injected with everyone's eyes on the site -- it felt like agony to watch. But -- No leaks! Success! Dr. Karen Powers, one of the participants, fumed that if the doc checking Nadine's port objected to using it the next Monday, someone should show him Nadine's arm.
After it was over, I was so devastated about how miserable Nadine had been feeling recently, plus this IV ordeal, that when Carol,the CURE (cancer family support) lady came over and asked how I was doing, I suggested a private space, pulled the curtain, and collapsed into her arms. She was through leukemia with her son, who is now 35; she understood.
Margaret the nurse-practitioner came over, answered questions, and announced that Nadine would have a new antibiotic for about 2 years to protect her from pneumocystic pneumonia, which is harmless to healthy people and would be extremely dangerous if Nadine got it. Yet another med in the arsenal.
After Nadine's hour-plus required recovery period, she was so weak that she had to be brought downstairs in a wheelchair for the first time ever. I won't even describe how I felt feeling wheeling my crumpled daughter down the hall, into the elevator, and off to the parking garage.
After we got home, Nadine was feeling so awful that she couldn't get out of bed, didn't want to do anything, and moaned a lot -- this went on (with a few respites) for days, and was very hard to face. Sadly it's part of the norm, I learned -- wretched, saddening, awful, and surrealistically normal.... The world turned on its head.
It was older brother Raymi's last night at the house, and he was able to tempt Nadine into a game of Dominion (the new game he had brought over) downstairs with him and Sylvia. I opted out, feeling they could use some mommy-free space, but I joined in the last game, during which Raymi sat with his back to the head of the bed and Nadine sprawled in his arms -- the two looked blissful.
Wednesday was another slow-Nadine-day. Raymi left around 4PM to return to Pittsburgh, taking a half gallon of glaring red "Fruit Punch" flavor Gatorade for the journey. Come to think of it, the red color and translucency of the Gatorade pretty much matches the doxyrubicin chemo medicine.
I wanted to cook a meal for the Klassens and us -- I chose one of Nadine's favorites, "Asian Delight", and was happy that everyone liked it. Nadine's appetite was excellent for a change. However, after dinner Nadine started to feel wretched again, and my mood followed suit.
On Thursday Nadine felt miserable for most of the day, again. Jessie the visiting nurse came over and actually succeeded in getting an easy blood draw. I'd hoped to "drop in" on the RAHA homeschool park day with Nadine, but there was no way. She perked up for a while, going out to Goodwill with Sylvia to help orchestrate Sylvia's "going away" wardrobe, a fun girl activity. I prepared another dish (potato puff) for the family again, and Nadine ate fabulously.
I made a few "catch-up" calls -- to James Willey (from the composition contest) to make sure that Nadine wasn't missing something for the performance of her trio by Chamber Music Rochester. I called Eastman about the late bill for last spring, and the registrar announced that both of us had been given full scholarships retroactively for last spring -- this was an enormous surprise!
I also blurted out to James Willey that I'm considering taking my own music composing seriously, and got some tips as to how to get started. The scholarships have prodded me into believing that maybe I can do it -- they feel like an affirmation not only for Nadine but for me as well.
Around dinnertime, Nadine felt well enough to nag me to let her go to the contra dance. Although I was happy to support other thigns, I didn't think it was the best idea -- for one thing, if she caught anything in the middle of the "Big Chemo" it could create a "Big Mess", and also she was collapsing pretty easily. However, I didn't have to push it this time -- as suddenly as she'd perked up, she suddenly collapsed again and rushed to the couch to lie down. At least there had been a spark. Oh, I'd love to just see her dance again.
Things worsened -- Nadine, lying on the couch, asked for the bucket. By the time I went downstairs and brought it up, she'd lost her dinner into the bathroom sink. I held her head while she finished what she had to.
One affirming thing was that I was able to do music for her. She was feeling terrible and asked for me to improvise, and I created something for her -- this time getting into three-apart gentle music, and eventually easing into the same gentle tone but with rhythms of 7 and 5 beats. It was very, very affirming to be able to serenade Nadine with something that would make her feel happy. She relaxed and rested up. I hope to keep working with some of the pieces I created. It's amazing that the two of us both love music this way.
I did something stupid that night -- I accidentally poured too much cayenne in a concoction I use to "clear out" my system and felt so sick that I actually called "Poison Control" to figure out how to neutralize the irritation. Amazingly, they had the answer -- take some high-fat milk or yogurt, and follow up by spooning in a small amount every few minutes until the pain stops. I could see the humor in all of this, especially given Nadine's condition. I apologized for what I was worried was a frivolous and the lady said it wasn't absurd, as I was hurting. The remedy worked fast!
I had to get Nadine up for her night-time meds, and after that we went downstairs for bedtime. She was feeling awful and wanted me in a sad weak voice to stay by her bed. I stayed and watched her -- she looked like the classic stereotype of a "cancer patient", frequently lying curled up. I pulled up a chair by her bed, and gave her the option of coming to bed with me -- she said she was worried she'd fidget and stayed where she was. I remained by her bed, holding her hand, and eventualloy laid my head on her bed and rested up, finally returning to my own bed.
On Friday I stayed in bed as late as I could get away with and got us quickly out for NAdine's next BIGG chemo-in-the-spinal-fluid injection. She weighed in at 104 pounds -- she'd lost weight, but she'd also lost last night's dinner and wasn't able to eat or drink before the spinal procedure.
Beth Schemp, the wound specialist, came up (we'd planned this), removed the wound dressing, and prounced the top wound as being healed and the bigger bottom one doing well. She irrigated it and sopped up the irrigant with gauze, while Nadine grimaced. I asked if a new bottle of saline needed to be used for each dressing change and Beth emphaically said yes, eventhough Jessie the visiting nurse had said it wasn't needed. I'll go with Beth's opinion, as it's the more stringent and I don't want to take chances.
Nurse Laurel arrived to put in Nadine's IV -- she tried and tried and tried and tried and couldn't access a vein. Poke poke poke poke. Miserable again. It didn't help that once again Nadine couldn't hydrate herself (drink) before the procedure. Finally another nurse arrived and "got it". We arrived at the treatment room, and Margaret "did the honors" -- the stuff was injected into her spinal fluid and that was that.
Round Two of The Bigg Spinal Fluid Chemo was over.
If the port was approved for use the following Monday, that would be the end of the IV misery.
It took Nadine an extra long time to recover from the procedure this time, and I ended up taking her back to the car in a wheelchair, with her feeling awful.
We went to Eastman to pick up an alto flute for NAdine to use in case she can go to the National Flute Association convention in August, for which she auditioned and won the position of First Flute in the High School Flute Choir. First Flute means she came in "First" of all the auditioners, and it's a huge honor. I had to go up alone to get the flute, as she didn't feel up to trying it first. There was wonderful music outside the building, and I stopped a little -- Nadine called me on the cell phone to say she needed me at once. Realizing I'd temporarily lapsed into my "old self" habits, I returned quickly to the car, and took Nadine home.
I took a walk in the woods behind the house and waded in the stream -- I'll have a separate new post on this amazing experience.
There was a slow-approaching thunderstorm which reached us crashing loudly even when the sky looked blue, finally giving way to clouds and a brief heavy rain, followed by a double rainbow. It was beautiful.
I went in to tell Nadine, and was sad that she didn't want to come out and see it.
Barry arrived that night, and I prepared another potato puff. I felt overloaded with three days of cooking and doing all the clean-up. Nadine couldn't help, and Barry needed a break when he was here. I wanted to practice piano and type my journal.
I felt wistful -- Ashokan Music and Dance Camp was starting that Sunday, a usual highlight of Nadine's and my year. Ashokan, where Nadine and I had met wonderful people, and immersed ourselves totally in traditional music (and its modern wrinkles), taking many workshops, and participating in dances, jam sessions, the works. The mutual support, the love, and the beautiful country setting were perfect. This year we weren't going. I sat outside and called a friend who attends and also works there, and he said he'd make an announcement so people didn't think we were "blowing off" the event and the community.
Nadine wanted me to create some music for her again as she lay on the couch, and it was my complete pleasure and honor to do so. Once again, she relaxed.
Late that night, Nadine needed me again, and I sat late by her bedside before she finally could rest.
On Saturday, Betty came over and we had another nice walk, including talking about what we wanted to do after the kids left home. Claire is leaving for college next month. I'm not quite sure what I'll do either -- I'm pretty sure I know what I want, but don't know how I'll get there, or if I'll have the discipline and/or gumption. Composer, writer, musician, friend, beachcomber, swimmer, other. Barry has his own goals.
We returned and Betty quilted the quilt she's making for Claire in honor of her departure, and I folded the dishrags I had washed and dried for Sue. It's a nice luxury to do this kind of task. Imagine -- a luxury to do housework.
Later on Nadine felt awful again.
At one point I created some music for her while Barry, in a mask because of a possible cold, held her hand and looked lovingly at her. It was a long interlude.
I spoke with Alice Kanack -- she had offered me the use of the apartment at her music school, and we made plans for me to move in this week. Imagine -- getting to live at a music school!! She's been wonderful to me and Nadine from the first time she visited us at the hospital. She orchestrated music students (and others) creating a live CD and crafts for Nadine, brought me a lovely shirt, arranged for Nadine's trio to be performed at her school, and is becoming a treasured friend.
Clouds built up like the night before, thunder approached, it got heavier, and it poured. Barry's Cabriolet got a puddle. We had walked just before the rain, and were sitting on an outside bench under the trees when it started. Barry went back inside.
It rained super-super-hard like a faucet in the clouds turned on full blast over my head. I ran out into the full rain and flung my head face-up towards the deluge, relishing the feeling of rain pouring hard on my face. I arrived back in the house wet, even if I'd been out in it for less than a minute.
I was exhausted and went to bed around 9:30.
In the middle of the night I felt a scuffling and Nadine appeared in bed with me, her small voice saying she was tired but couldn't rest. She curled up and I cuddled her fuzzy head. She seemed very young. My "mother" feeling promptly returned with no prompting on my part, resembling the way it was when Nadine was little. I was able to "tune" well, and soon she relaxed. She stayed there for the night and we both got a decent night's sleep.
On Sunday morning about 11AM the week-end visiting nurse came to draw Nadine's blood for the Monday chemo session. I had asked for an IV expect. She was stodgy, competent woman who quickly found a vein, and that was that. Barry and I took a walmk in the muggy weather, all the way to Lake Avenue and back. In addition to talking about Nadine, we also talked about what-we-wanted-to-do-when-she-left-home.
Later in the day, I sat on a rock in the sun outside the house, and lay back to sun my face. The warmth brought a familiar feeling of "me-ness" that had been largely put aside since May. I realized it was the first time I'd put my face up into the warm sun since Nadine's diagnosis, and here it is midsummer. Summer is my favorite time of year. I gratefully allowed myself the pleasure of the company of my cherished friend the sun.
As Barry was leaving soon, I had to sort out what stuff Barry should bring back to Hinsdale. My car had been the repository of just about everything I didn't need at any given moment. It was piled high with things brought from home plus things acquired while here. I felt clumsy and messy, but somehow managed to get some obvious non-necessities off.
Nadine had requested that I do a food-shop for some specific goodies. Barry was ready to leave. Nadine settled on the couch -- by then the Klassens were home and packing for their large bike excursion, and everyone was comfortable with Nadine over there, so he left. I got Nadine's requests, provisions for the week, and some requests from Sue; then I returned and help her take parsley leaves off parsley stems for dinner, while Nadine enjoyed being in the company of the rest of them. Their family packing session was a harmonious flurry of activity, and by the end of the evening the scattered clothing and provisions congealed into well-stuffed panniers ready to be mounted or hung on the two tandems that the four of them would ride on. I do treasure their family. Dinner was a summer borscht with hardboiled eggs, and Nadine ate well
Bedtime, and Nadine and I each went to our beds.
In the middle of the night, Nadine returned to my bed. I soothed her and she rested. After that, I got up and took a nice bath and shower before rejoining her. Again, she has seemed young.
____________________
On Monday morning July 27th, I got up barefly on time to go upstairs, hug Sue, and race off to the hospital with Nadine, where we'd find out if Nadine's port incision had healed enough for it to be used. Yay!! It could be accessed! The end of an awful era. For some reason, Nadine chose a warm wool hat knitted by her friend April, even though it was muggy and warm out. I realize her hot-cold perceptions are strange these days, and said nothing. We went to the 6th floor pediatric clinic, and Laurie, the first nurse-practioner we'd had, was on duty.
I was concerned if Nadine's tired-and-dragged-out-ness was due to the "normal" course of chemo and disease or if it signaled an extra concern. Laurie said it was "normal" for the course. Admittedly miserable, but normal. Later, Eric the social worker said it might persist for a long time, perhaps the 30 weeks of "consolidation", not a fun prospect. He said some people have to just rest up.
Eric also said that sometimes a young person will act or seem younger than their age at times. I was relieved to know this, given how Nadine was feeling. He also said it was a good thing that Nadine was able to show how she felt, even if she didn't feel "up". Maybe there is something positive about it after all. It is a scary, painful, miserable illness, after all.
I told Eric that he has a heart like a mother's lap -- there's always room for whoever needs it. He said he'd remember that.
Nadine was still feeling weak, and afterwards I had to wheel her down to the EKG room. She was getting an ultrasound "Echo" cardiogram, which was routing to make sure the doxyrubicin wasn't damaging her heart. It was fascinating to see the insides of her heart, the atrium and ventricle, the tissue moving and the blood moving. I asked how the device could focus on the heart and not on the rib cage or spinal cord, and she said it focused on things that moved. That would be the heart and the blood.
After this, Nadine wanted to go STRAIGHT home, and that's what we did. We were back in the house around 4PM.
So much for a "summary" of what went on over that week. More later.
Saturday, July 25, 2009
Who Am I?
Who am I? The "me" that exists beside, and complementary to, the changes since May has been flooding me in the form of images of places I love and deeply associate with myself. Two days ago I impulsively asked Barry to please include some of my seashells in the things he brought. They arrived today, crisp, crinkly and welcome.
Today I walked in the woods behind Sue's house, where I'm staying. The toad that hopped in front of me (almost falling victim to my foot) brought memories of the shadowy toads I see at night walkng towards the Atlantic ocean beach by which I usually camp for about a week or two each summer, sometimes with Nadine and sometimes completely alone. If I could live anywhere, I lookat near the ocean; I attempt to compensate for the loss by annually immersing myself in the world of sand, sea, sun, and sometimes thunderstorms for that short time, making each moment count.
I tentatively stepped across the Klassens' wobbly hanging bridge over the stream and saw the "Wiggly Bridge" over the lake at Ashokan camp/preserve, where Nadine and I are "fixtures" at Jay Ungar and Molly Mason's late-July "Northern Week", a total music immersion brimming with workshops, classes, concerts, friendships, jam sessions, and incredibly musical and personal encounters. With its dedicated cadre of teens, Nadine and I say "Bye" to each other on arrival, meeting occasionally over a meal, to check flashlights, and sometimes rehearse. "Ashokan Farewell" was written in honor of these music camps, and it was there that Nadine and I developed our traditional-music skills, confidence, and community to the point of being ready to perform. At Ashokan I first feared to cross the "Wiggly Bridge", then lurched timidly across, and finally made a habit of bouncing triumphantly from one end to the other.
I braved the Klassens' bridge today and set off through mud and hopefully-not-poison-ivy until the stream doubled back; I removed my shoes, rolled up my pants, and waded and poked my way to a rock in the center, where I sat with feet in the water relishing the feel of water on toes and the sight of light-and-shadow on trees and moving water. I may have hundreds of photos of my feet in water or mud, a personal custom akin to my habit of photographing Nadine "asleep" in the different places we travel to. I remembered late April of this year, when Nadine and I stopped at a sunny riverbank on the way from playing a dance in Williamstown (western) Massachusetts to Mansfield MA (south of Boston). Nadine and I both climbed happily over rocks, settling on rocks juxtaposed to the river about 100 feet from each other. There, I settled by the shore; Nadine lay on a relatively flat rock in the midst of the river (I'm less adventurous, or less graceful, than she). The water glistened in eddies, and everywhere I looked was a different texture, a different pattern of movement, flow, and light.
Still at the Klassen stream, I thought of Prince Creek near Carbondale Colorado, where we also camped several times.. There, the chilliness of the shallow crystal-clear water didn't stop me from happily immersing myself all the way in, loving the flow of water against my head and feeling the happy tingle on my skin long afterwards. I would hike alone down the creek to a place where three streams (or creeks) came together with a little island in the middle, and wade and/or negotiate rocks to get onto the island. I nicknamed this area the "Confluence", not knowing that years later Nadine's and my music duo would be named "Confluence". Amazingly, she was the one who came up with the name, completely unaware of its significance to me. We used to volunteer at the Carbondal Mountain Fair, where hordes of people danced outside in the hot sun to excellent music with 12,000-foot Mount Sopris in the background and smiles everywhere. The crew would gleefully spray water (with waterhoses) high up into the air above the dancers, where it fell like rain and cooled us off. I remember hiking on Mount Sopris, and the smell of pines. Another day, Nadine and Erek hiked to the top and she brought back an incredible photo she took of the sunrise.
Memories. The life I led. The me that I still am. It's still with me, even if I don't get there this summer. Today I fantasized about jumping in the car and driving all the way to the Atlantic, even if only to plunk myself down, set up my tent, wander, gaze, listen, camp, and swim for a day or two and then return. I remember lying in the tent watching the beach vegetation waving in the wind and hearing the wonderful sound of the ocean. Returning this summer is a nice fantasy even though it feels completely right to be here instead. The thoughts are still pleasurable and satisfying, and I've had the gift of many years to physically be there; this should carry me well through the summer. Perhaps next year I'll get back....
Wherever I am, I'm still me, in many permutations, some new and some old. I like that.
Today I walked in the woods behind Sue's house, where I'm staying. The toad that hopped in front of me (almost falling victim to my foot) brought memories of the shadowy toads I see at night walkng towards the Atlantic ocean beach by which I usually camp for about a week or two each summer, sometimes with Nadine and sometimes completely alone. If I could live anywhere, I lookat near the ocean; I attempt to compensate for the loss by annually immersing myself in the world of sand, sea, sun, and sometimes thunderstorms for that short time, making each moment count.
I tentatively stepped across the Klassens' wobbly hanging bridge over the stream and saw the "Wiggly Bridge" over the lake at Ashokan camp/preserve, where Nadine and I are "fixtures" at Jay Ungar and Molly Mason's late-July "Northern Week", a total music immersion brimming with workshops, classes, concerts, friendships, jam sessions, and incredibly musical and personal encounters. With its dedicated cadre of teens, Nadine and I say "Bye" to each other on arrival, meeting occasionally over a meal, to check flashlights, and sometimes rehearse. "Ashokan Farewell" was written in honor of these music camps, and it was there that Nadine and I developed our traditional-music skills, confidence, and community to the point of being ready to perform. At Ashokan I first feared to cross the "Wiggly Bridge", then lurched timidly across, and finally made a habit of bouncing triumphantly from one end to the other.
I braved the Klassens' bridge today and set off through mud and hopefully-not-poison-ivy until the stream doubled back; I removed my shoes, rolled up my pants, and waded and poked my way to a rock in the center, where I sat with feet in the water relishing the feel of water on toes and the sight of light-and-shadow on trees and moving water. I may have hundreds of photos of my feet in water or mud, a personal custom akin to my habit of photographing Nadine "asleep" in the different places we travel to. I remembered late April of this year, when Nadine and I stopped at a sunny riverbank on the way from playing a dance in Williamstown (western) Massachusetts to Mansfield MA (south of Boston). Nadine and I both climbed happily over rocks, settling on rocks juxtaposed to the river about 100 feet from each other. There, I settled by the shore; Nadine lay on a relatively flat rock in the midst of the river (I'm less adventurous, or less graceful, than she). The water glistened in eddies, and everywhere I looked was a different texture, a different pattern of movement, flow, and light.
Still at the Klassen stream, I thought of Prince Creek near Carbondale Colorado, where we also camped several times.. There, the chilliness of the shallow crystal-clear water didn't stop me from happily immersing myself all the way in, loving the flow of water against my head and feeling the happy tingle on my skin long afterwards. I would hike alone down the creek to a place where three streams (or creeks) came together with a little island in the middle, and wade and/or negotiate rocks to get onto the island. I nicknamed this area the "Confluence", not knowing that years later Nadine's and my music duo would be named "Confluence". Amazingly, she was the one who came up with the name, completely unaware of its significance to me. We used to volunteer at the Carbondal Mountain Fair, where hordes of people danced outside in the hot sun to excellent music with 12,000-foot Mount Sopris in the background and smiles everywhere. The crew would gleefully spray water (with waterhoses) high up into the air above the dancers, where it fell like rain and cooled us off. I remember hiking on Mount Sopris, and the smell of pines. Another day, Nadine and Erek hiked to the top and she brought back an incredible photo she took of the sunrise.
Memories. The life I led. The me that I still am. It's still with me, even if I don't get there this summer. Today I fantasized about jumping in the car and driving all the way to the Atlantic, even if only to plunk myself down, set up my tent, wander, gaze, listen, camp, and swim for a day or two and then return. I remember lying in the tent watching the beach vegetation waving in the wind and hearing the wonderful sound of the ocean. Returning this summer is a nice fantasy even though it feels completely right to be here instead. The thoughts are still pleasurable and satisfying, and I've had the gift of many years to physically be there; this should carry me well through the summer. Perhaps next year I'll get back....
Wherever I am, I'm still me, in many permutations, some new and some old. I like that.
Tuesday, July 21, 2009
Clear Sailing
Once last Friday came, it was finally "clear sailing" for the week-end. After being scarily sick, Nadine was finally feeling better, and was nice and cheerful; therefore, so was I. Raymi got to spend time with his sister when she was feeling good.
On Thursday evening Nadine's friend Rafi brought over an amazing 18X24 inch ink line-drawn portrait of Nadine, with wonderful textures of her and the treed background; I got a nice visit with Diana, his mom. On Friday I rushed out to find a frame to protect (and enhance)the drawing.
Later on, Nadine's friend Claire and her mom Betty came to visit, and the two girls got a chance to laugh together while Betty and I took a long, satisfying walk in the rain, each of us carrying one of Betty's beautiful transparent green umbrellas.
Nadine felt well but still was pretty weak from having been sick -- we ventured out together and she managed to walk past a grand total of (about) five houses. On Saturday Raymi brought out a new game he'd brought to the hospital and Raymi, Nadine and I happily stayed up together. Nadine's appetite came back, and we shared some really nice dinners, including an outstanding one with rice noodles, tofu, shrimp, and sauce. At first she'd only take a few bites; by the end of the week-end she was able to feast. Jessie the nurse had come on Thursday to check her. Her blood counts were wonderful.
By Saturday Nadine was looking fine, and on Sunday she looked perfect.
Nadine had hoped to go to Claire's Gilbert and Sullivan performance, but it wasn't the right time to take any chances of "catching something" after the past week. She was scheduled to get her new "port" finally put in on Monday, and had a huge chemo session (spinal injection of medicine plus regular intravenous chemo plus more) scheduled for Tuesday at the clinic. If she got sick again it would be a disaster, and mercifully she was okay with it.
On Sunday I was encouraged to go to it. After some apprehension, I went -- my first real solo recreational "drive-off" since May, and I admit that I was glad get away. After spending some nice time with Nadine and Raymi, I drove off to Pultneyville. I thoroughly enjoyed the fresh air and watching the excellent performers inside from a prime front seat in the balcony. I enjoyed Claire's fun nuances in the comedy, and was impressed at her choreography. I knew Nadine was well taken care of. I arrived back at the house feeling renewed.
It was the first week-end Barry didn't get up here. The cat, Felicity, had been spayed on Tuesday and wasn't doing well, including not eating. Barry needed a well-deserved rest anyway, and the cat recovered after having some love and cuddling.
On Sunday evening, it looked like Nadine had her full strength bounding back. We took a walk and she made it, at a brisk pace, all the way down Brooksboro Drive to Bridgeboro, and then almost to Salt Road. And back in fine shape.
That night, I had to muddle through changing Nadine's dressing all by myself. Jessie the nurse couldn't come, and her new port was being put in the next day at the hospital. I was pretty nervous about it, even though I'd done it at the clinic with the nurse watching. Raymi wanted to watch, which he deserved -- still it made me more nervous. I assembled the supplies, a job in itself, chose a "staging area" of two wooden chairs and carefully disinfected them, installed Nadine on a clean sheet on top of a bed, put on clean gloves, and went to work. It felt awkward -- I got the bandage off. I was supposed to leave the dressing on if it hadn't gotten squish, but change it if it was squishy. It was half squishy and half firm. I removed the gloves and called Jessie the nurse, who mercifully answered -- she said to squirt saline onto the firm part of the dressing to wet it and then change it. It worked. Raymi helped by opening up packages of supplies. Nadine was pretty grumpy (understandably) and I was still nervous. I poked in the Aquacel to stuff the wound, put on the Allevyn bandage, and was finally done. Nadine and I both cheered up afterwards.
We had to get to bed early, even Nadine, as we were leaving the house early on Monday before going to the hospital for Nadine's port insertion.
But we still had time for much merriment on Sunday evening first.
On Thursday evening Nadine's friend Rafi brought over an amazing 18X24 inch ink line-drawn portrait of Nadine, with wonderful textures of her and the treed background; I got a nice visit with Diana, his mom. On Friday I rushed out to find a frame to protect (and enhance)the drawing.
Later on, Nadine's friend Claire and her mom Betty came to visit, and the two girls got a chance to laugh together while Betty and I took a long, satisfying walk in the rain, each of us carrying one of Betty's beautiful transparent green umbrellas.
Nadine felt well but still was pretty weak from having been sick -- we ventured out together and she managed to walk past a grand total of (about) five houses. On Saturday Raymi brought out a new game he'd brought to the hospital and Raymi, Nadine and I happily stayed up together. Nadine's appetite came back, and we shared some really nice dinners, including an outstanding one with rice noodles, tofu, shrimp, and sauce. At first she'd only take a few bites; by the end of the week-end she was able to feast. Jessie the nurse had come on Thursday to check her. Her blood counts were wonderful.
By Saturday Nadine was looking fine, and on Sunday she looked perfect.
Nadine had hoped to go to Claire's Gilbert and Sullivan performance, but it wasn't the right time to take any chances of "catching something" after the past week. She was scheduled to get her new "port" finally put in on Monday, and had a huge chemo session (spinal injection of medicine plus regular intravenous chemo plus more) scheduled for Tuesday at the clinic. If she got sick again it would be a disaster, and mercifully she was okay with it.
On Sunday I was encouraged to go to it. After some apprehension, I went -- my first real solo recreational "drive-off" since May, and I admit that I was glad get away. After spending some nice time with Nadine and Raymi, I drove off to Pultneyville. I thoroughly enjoyed the fresh air and watching the excellent performers inside from a prime front seat in the balcony. I enjoyed Claire's fun nuances in the comedy, and was impressed at her choreography. I knew Nadine was well taken care of. I arrived back at the house feeling renewed.
It was the first week-end Barry didn't get up here. The cat, Felicity, had been spayed on Tuesday and wasn't doing well, including not eating. Barry needed a well-deserved rest anyway, and the cat recovered after having some love and cuddling.
On Sunday evening, it looked like Nadine had her full strength bounding back. We took a walk and she made it, at a brisk pace, all the way down Brooksboro Drive to Bridgeboro, and then almost to Salt Road. And back in fine shape.
That night, I had to muddle through changing Nadine's dressing all by myself. Jessie the nurse couldn't come, and her new port was being put in the next day at the hospital. I was pretty nervous about it, even though I'd done it at the clinic with the nurse watching. Raymi wanted to watch, which he deserved -- still it made me more nervous. I assembled the supplies, a job in itself, chose a "staging area" of two wooden chairs and carefully disinfected them, installed Nadine on a clean sheet on top of a bed, put on clean gloves, and went to work. It felt awkward -- I got the bandage off. I was supposed to leave the dressing on if it hadn't gotten squish, but change it if it was squishy. It was half squishy and half firm. I removed the gloves and called Jessie the nurse, who mercifully answered -- she said to squirt saline onto the firm part of the dressing to wet it and then change it. It worked. Raymi helped by opening up packages of supplies. Nadine was pretty grumpy (understandably) and I was still nervous. I poked in the Aquacel to stuff the wound, put on the Allevyn bandage, and was finally done. Nadine and I both cheered up afterwards.
We had to get to bed early, even Nadine, as we were leaving the house early on Monday before going to the hospital for Nadine's port insertion.
But we still had time for much merriment on Sunday evening first.
Friday, July 17, 2009
Upsie Downsie Upsie Downsie Revisited
Monday through Wednesday started okay but brought some unpleasant surprises including 2 night-time excursions to the emergency room, followed by a relieving clearing-out. My 28-year-old son Raymi arrived -- a gift. It might take two posts to write about everything. I might have reacted worse to Nadine's rough time because her stellar week-end may have lulled me into false expectations of continued smooth "sailing".
Monday July 13th was Nadine's "clinic day" at the hospital. We arrived early for Nadine's blood-drawing, then went up the "silver" set of hospital elevators to the clinic. Nadine was seeing Dr. Mullen, the head of the department, as her own doctor, Dr. Bruckner, was on inpatient duty.
Nadine was looking tired, peaked, and pale, reminding me of how she looked before she was diagnosed. Dr. Mullen ordered a transfusion of 2 units of red blood cells for the next day -- this wasn't unusual. It's strange how I no longer consider a transfusion of red blood cells (or anything else) unusual. A different world.
The nurse, Laurel, was going to change the dressing on Nadine's wound from the port removal. She suggested that I change the dressing with her watching me. I got training in using sterile gloves, very cumbersome -- I've seen nurses do it with ease, and probably once I learn it, it can be like riding the proverbial bicycle. It didn't have to be perfect for this procedure -- it was mainly practice in case I need to do a sterile procedure later on. To change the dressing, I removed the Allevyn bandage, pulled out the squishy Aquacel dressing from her about-two-inch-long bowl-shaped chest wound left after her port was removed (it needs to heal from the inside out), saw (along with the nurse) that it looked like it was healing, drew up saline into a syringe and released a generous amount of saline into the wound, and swabbed it out with sterile gauze. I cut a half-inch-wide spiral piece (maybe 8 inches long) out of the rectangular piece of Aquacel, stuffed it into the wound, swabbed the area around it with adhesive prep liquid (she likes the feel of this), peeled off the backing of the waterproof Allevyn bandage, put it on carefully to avoid "bubbles" around the edge, and I was done and proud of myself. The end.
Although Nadine was tired, she wanted a hat that wasn't as conspicuous as her pink fleece one, so we stopped on Monroe Avenue and she picked out a nice one in reversible tan and blue denim; then I got groceries and we went back to the Klassen household. Betty Wayman had invited us to go to a concert at Kilbourn Hall near Eastman that night, and had offered to pick us up -- I was looking forward to going.
I checked my phone messages. My 28-year-old son Raymi had called. He had just moved to Pittsburgh. The moving truck had arrived with his things -- he wanted to drive up and see us that very night!! I was shocked and thrilled. However, it had taken until 5PM to reach me, and he decided to delay it a day. Still exciting!
Nadine said she felt cold, and her body started to feel warm to me; she lay limply on the living room couch after dinner. She had an unpleasantly hazy look. I took her temperature and it read over 101; later it read almost 103 degrees. The on-call doctor, Dr. Koronas, said I needed to bring her into the emergency room. Ugh. I felt terrible, and she felt terrible of course. What a nasty surpris.
It was after 8PM, and I called Ronald MacDonald House to request a room, realizing it would be a late night. I didn't get through, panicking me. I arrived at the emergency room to find the parking lot full, plunked the car right outside, and rushed her in past the adult section to Pediatrics. They were expecting her, and placed us in a separate room. A doctor appeared, and a nurse drew her blood; she would have to wait for results (CBC and blood culture were done). I dashed out to park the car, checked my phone messages and found out we had a room at MacDonald House for the night. Whew. The blood test took hours -- we waited in the ER room, with Nadine lying on the bed; eventually I asked to lie down and was given the other bed in the room. Finally,the bloodwork came back -- her counts were okay and they didn't find bacteria in her blood. We were let out. I drove, exhausted, to MacDonald House room G4, where we flopped down on our two pretty quilt-bedspreaded beds.
I got my traditional cookie before bed. Funny, I haven't craved cookies in other places, but at MacDonald House the cookie jar holds comfort for me.
On Tuesday morning I let Nadine rest and rest and rest. I went out to the kitchen. Sharon was there and said "Welcome home". I made ginger tea for Nadine and played Bach on the piano. The house manager told me that my daily fee for staying there would be to play more music. I had another cookie.
I'd hoped Nadine to get up on her own, but At 11:30, I finally rousted her. I was sorry I hadn't done it earlier -- we slogged to the clinic around noon for Nadine's transfusion. The nurse worried that we were too late to give her her two units of blood, but the job was successfully done within about 3 hours, not bad. She was still pretty tired, and rested through most of it.
Raymi called -- he was driving up that day, and expected to arrive by 9:30 or 10PM! I figured we'd have a nice peaceful evening, with Nadine "on the mend".
We returned to MacDonald Houwe, where I stripped the beds (as per orders) and checked out of MacDonald House, getting to sample some food first. We arrived at the Klassen household amidst merriment.
All seemed well, but soon Nadine started to feel bad again. She retired downstairs to rest up, in the middle of dinner. She looked really wretched, and I went out to get a better thermometer.
I felt depressed, as bad as I'd been during our experience. At one time, I spoke with (on the phone) a close friend who had been present at Nadine's birth, and she urged me to share what was going on. It was a tearful time, with sadness and anger welling up in me., We also reminisced about our days together when Erek, Raymi and Nadine were all little. She told me to stay in touch and urged me to call her if I felt awful as well as when I was happy. I was grateful.
I arrived home, and Nadine walked up the stairs -- it was hard for her and she started coughing. She said it was phlegm getting stuck in her throat, but who knew? She was coughing so hard she couldn't even hold the thermometer in her mouth. It went on and on. The doctor suggested some ways to get it out -- nothing worked. She looked dazed and really awful. Finally I got her temperature -- it read around 103 or 104.
My son Raymi, arriving from Pittsburgh and looking cheery in his tie-dye shirt, bounded in while I was on the phone with the doctor. What an arrival for my oldest son -- I'd looked forward to a joyful reunion.
Nadine was looking incredibly wretched, she was coughing hard, and she had a temperature. We all tried to help her cough up the junk, but nothing worked, and Nadine was hurting. She had trouble with feeling cold, even though the room was warm and she had multiple blankets on.
I called the docto, who could hear Nadine's cough over the telephone. She insisted Nadine had to go back to the emergency room and get a chest X-ray to make sure, among other things, that it wasn't pneumonia and that her blood counts hadn't plummeted.
I rebelled, wild with frustration, anger, grief, and exhaustion. She'd been to the ER the last night; I didn't want her subjected to the exhaustion, and to more radiation for the diagnostics. I also was upset about the family reunion being like this. I was so tired that I asked Raymi, who at least was alert, if he'd be willing to bring her to the ER if she had to go, and he immediately agreed to go if needed. I called back the doctor to make sure it was necessary == she insisted it was imperative to rule out pneumonia, (she was obviously right), she said she'd heard Nadine's cough over the phone, and she told me to get some rest. She sounded understandably exasperated -- it was late.
Nadine was so weak that Raymi had to carry her up the stairs. They went off to the ER, and amazingly I got to bed and rested up. I sort of heard them come home around 5AM. There was no pneumonia, but that was the only way to know.
The next day, Wednesday July 14th, I still felt tired and sour, and Nadine was exhausted and still feeling miserable. Eventually Raymi got up and we drove around to find him a 4 1/2-mile run course; we found one, and he took his morning run. He was wilted afterwards from "running tired". Then he and I played a game together -- Raymi won as usual, but it cheered me up some. NAdine lay around most of the first part of the day. I couldn't tell if she was sick or simply exhausted from the previous night.
While Nadine was on the couch, she wanted me to play some music for her. I started on Bach and she asked me to improvise instead. I thought of her and started to create a new piece; later on I did a simple repeated pattern on the piano and she seemed to really like it. I was honored to be able to use this for her. She apologized for being so "picky" about what kind of music I did, but I was happy she could tell me what she wanted.
At some point later, Nadine started to sweat, an excellent sign associated with fever going away. She said she was feeling warm in stead of the previous cold feeling -- it looked like she was finally losing a fever.
Nadine started to feel better. She was more animated, and she looked nicer. Se had a pleasant meal, and I enjoyed watching Nadine across the table. It was fun having Raymi there -- he fit right into the merriment and conversation. I went out to get my favorite Vitamin C tablets. After that, I went to bed.
The misery finally seemed to be over.
It was like a rainbow had arrived, drenching us with beautiful light.
Monday July 13th was Nadine's "clinic day" at the hospital. We arrived early for Nadine's blood-drawing, then went up the "silver" set of hospital elevators to the clinic. Nadine was seeing Dr. Mullen, the head of the department, as her own doctor, Dr. Bruckner, was on inpatient duty.
Nadine was looking tired, peaked, and pale, reminding me of how she looked before she was diagnosed. Dr. Mullen ordered a transfusion of 2 units of red blood cells for the next day -- this wasn't unusual. It's strange how I no longer consider a transfusion of red blood cells (or anything else) unusual. A different world.
The nurse, Laurel, was going to change the dressing on Nadine's wound from the port removal. She suggested that I change the dressing with her watching me. I got training in using sterile gloves, very cumbersome -- I've seen nurses do it with ease, and probably once I learn it, it can be like riding the proverbial bicycle. It didn't have to be perfect for this procedure -- it was mainly practice in case I need to do a sterile procedure later on. To change the dressing, I removed the Allevyn bandage, pulled out the squishy Aquacel dressing from her about-two-inch-long bowl-shaped chest wound left after her port was removed (it needs to heal from the inside out), saw (along with the nurse) that it looked like it was healing, drew up saline into a syringe and released a generous amount of saline into the wound, and swabbed it out with sterile gauze. I cut a half-inch-wide spiral piece (maybe 8 inches long) out of the rectangular piece of Aquacel, stuffed it into the wound, swabbed the area around it with adhesive prep liquid (she likes the feel of this), peeled off the backing of the waterproof Allevyn bandage, put it on carefully to avoid "bubbles" around the edge, and I was done and proud of myself. The end.
Although Nadine was tired, she wanted a hat that wasn't as conspicuous as her pink fleece one, so we stopped on Monroe Avenue and she picked out a nice one in reversible tan and blue denim; then I got groceries and we went back to the Klassen household. Betty Wayman had invited us to go to a concert at Kilbourn Hall near Eastman that night, and had offered to pick us up -- I was looking forward to going.
I checked my phone messages. My 28-year-old son Raymi had called. He had just moved to Pittsburgh. The moving truck had arrived with his things -- he wanted to drive up and see us that very night!! I was shocked and thrilled. However, it had taken until 5PM to reach me, and he decided to delay it a day. Still exciting!
Nadine said she felt cold, and her body started to feel warm to me; she lay limply on the living room couch after dinner. She had an unpleasantly hazy look. I took her temperature and it read over 101; later it read almost 103 degrees. The on-call doctor, Dr. Koronas, said I needed to bring her into the emergency room. Ugh. I felt terrible, and she felt terrible of course. What a nasty surpris.
It was after 8PM, and I called Ronald MacDonald House to request a room, realizing it would be a late night. I didn't get through, panicking me. I arrived at the emergency room to find the parking lot full, plunked the car right outside, and rushed her in past the adult section to Pediatrics. They were expecting her, and placed us in a separate room. A doctor appeared, and a nurse drew her blood; she would have to wait for results (CBC and blood culture were done). I dashed out to park the car, checked my phone messages and found out we had a room at MacDonald House for the night. Whew. The blood test took hours -- we waited in the ER room, with Nadine lying on the bed; eventually I asked to lie down and was given the other bed in the room. Finally,the bloodwork came back -- her counts were okay and they didn't find bacteria in her blood. We were let out. I drove, exhausted, to MacDonald House room G4, where we flopped down on our two pretty quilt-bedspreaded beds.
I got my traditional cookie before bed. Funny, I haven't craved cookies in other places, but at MacDonald House the cookie jar holds comfort for me.
On Tuesday morning I let Nadine rest and rest and rest. I went out to the kitchen. Sharon was there and said "Welcome home". I made ginger tea for Nadine and played Bach on the piano. The house manager told me that my daily fee for staying there would be to play more music. I had another cookie.
I'd hoped Nadine to get up on her own, but At 11:30, I finally rousted her. I was sorry I hadn't done it earlier -- we slogged to the clinic around noon for Nadine's transfusion. The nurse worried that we were too late to give her her two units of blood, but the job was successfully done within about 3 hours, not bad. She was still pretty tired, and rested through most of it.
Raymi called -- he was driving up that day, and expected to arrive by 9:30 or 10PM! I figured we'd have a nice peaceful evening, with Nadine "on the mend".
We returned to MacDonald Houwe, where I stripped the beds (as per orders) and checked out of MacDonald House, getting to sample some food first. We arrived at the Klassen household amidst merriment.
All seemed well, but soon Nadine started to feel bad again. She retired downstairs to rest up, in the middle of dinner. She looked really wretched, and I went out to get a better thermometer.
I felt depressed, as bad as I'd been during our experience. At one time, I spoke with (on the phone) a close friend who had been present at Nadine's birth, and she urged me to share what was going on. It was a tearful time, with sadness and anger welling up in me., We also reminisced about our days together when Erek, Raymi and Nadine were all little. She told me to stay in touch and urged me to call her if I felt awful as well as when I was happy. I was grateful.
I arrived home, and Nadine walked up the stairs -- it was hard for her and she started coughing. She said it was phlegm getting stuck in her throat, but who knew? She was coughing so hard she couldn't even hold the thermometer in her mouth. It went on and on. The doctor suggested some ways to get it out -- nothing worked. She looked dazed and really awful. Finally I got her temperature -- it read around 103 or 104.
My son Raymi, arriving from Pittsburgh and looking cheery in his tie-dye shirt, bounded in while I was on the phone with the doctor. What an arrival for my oldest son -- I'd looked forward to a joyful reunion.
Nadine was looking incredibly wretched, she was coughing hard, and she had a temperature. We all tried to help her cough up the junk, but nothing worked, and Nadine was hurting. She had trouble with feeling cold, even though the room was warm and she had multiple blankets on.
I called the docto, who could hear Nadine's cough over the telephone. She insisted Nadine had to go back to the emergency room and get a chest X-ray to make sure, among other things, that it wasn't pneumonia and that her blood counts hadn't plummeted.
I rebelled, wild with frustration, anger, grief, and exhaustion. She'd been to the ER the last night; I didn't want her subjected to the exhaustion, and to more radiation for the diagnostics. I also was upset about the family reunion being like this. I was so tired that I asked Raymi, who at least was alert, if he'd be willing to bring her to the ER if she had to go, and he immediately agreed to go if needed. I called back the doctor to make sure it was necessary == she insisted it was imperative to rule out pneumonia, (she was obviously right), she said she'd heard Nadine's cough over the phone, and she told me to get some rest. She sounded understandably exasperated -- it was late.
Nadine was so weak that Raymi had to carry her up the stairs. They went off to the ER, and amazingly I got to bed and rested up. I sort of heard them come home around 5AM. There was no pneumonia, but that was the only way to know.
The next day, Wednesday July 14th, I still felt tired and sour, and Nadine was exhausted and still feeling miserable. Eventually Raymi got up and we drove around to find him a 4 1/2-mile run course; we found one, and he took his morning run. He was wilted afterwards from "running tired". Then he and I played a game together -- Raymi won as usual, but it cheered me up some. NAdine lay around most of the first part of the day. I couldn't tell if she was sick or simply exhausted from the previous night.
While Nadine was on the couch, she wanted me to play some music for her. I started on Bach and she asked me to improvise instead. I thought of her and started to create a new piece; later on I did a simple repeated pattern on the piano and she seemed to really like it. I was honored to be able to use this for her. She apologized for being so "picky" about what kind of music I did, but I was happy she could tell me what she wanted.
At some point later, Nadine started to sweat, an excellent sign associated with fever going away. She said she was feeling warm in stead of the previous cold feeling -- it looked like she was finally losing a fever.
Nadine started to feel better. She was more animated, and she looked nicer. Se had a pleasant meal, and I enjoyed watching Nadine across the table. It was fun having Raymi there -- he fit right into the merriment and conversation. I went out to get my favorite Vitamin C tablets. After that, I went to bed.
The misery finally seemed to be over.
It was like a rainbow had arrived, drenching us with beautiful light.
A Week-End Out
The Week-end Out
On Thursday July 10th, the night of leaving MacDonald House, Sue welcomed me; Sylvia welcomed Nadine. There was a Mexican style meal, some talk, and I went to bed. I got up and found no one in Nadine's little bedroom. I walked upstairs and tehre were Sylvia and Nadine on the living room couch. I went out, brought in Nadine's rainbow blanket, and brought it up. Both girls draped themselves in it and that was that.
On Friday morning, July 10th, I opened my eyes and didn't know where I was. It took a remarkably long time to figure it out. Nadine stayed in bed extremely late -- understandable. She had deserved a late night with her friend, and she had nothing to do in the morning but recuperate.
Jessica the nurse was coming at 11AM, and I hadn't even showered by then. Happily, Jessica was late. She changed Nadine's dressing -- Nadine said Jessica, who took it slow, was more gentle than the wound care specialist.
High-pitched squeals and shrieks eminated from upstairs -- Nadine's friend Claire had arrived. Nadine rushed up after Jessica left, and the three super-friends, Sylvia Claire and Nadine, gleefully "held court" together. I photographed them all on the couch, and a sleep-over was planned. While they had their wonderful giggle-time, Claire's mom Betty and I took a walk together.
I realize that being outside the hospital feels like a surreal coexistence of the normal and the abnormal, with one phase sometimes showing up more than the other, and it is hard to tell which will come up when. This can cause more anxiety than being in the hospital at times.
Barry, my husband, arrived about 6PM, went to the performance of Nadine's piece with me, and returned to the Klassen house with me and Nadine.
After dinner, Nadine wanted to take out Barry's 1989 Cabriolet convertible for a "spin" with Sylvia, and got permission. Sue, Barry, Victor, and I were all out there, a tense situation for Nadine who hadn't driven a car, let alone a stick shift car, for a long time, but she started it up perfectly and off they went into the warm night, with the convertible top down of course.
On Saturday July 11th Nadine went out shopping with Sylvia, the two girls going out on their own; later on she helped to cook dinner, a very bubbly time. Sue and I got to walk togetehr, noticing the wonderful after-the-rain color of the trees in the cloudy but extremely clear air.
An ordinary week-end was a true gift.
On Thursday July 10th, the night of leaving MacDonald House, Sue welcomed me; Sylvia welcomed Nadine. There was a Mexican style meal, some talk, and I went to bed. I got up and found no one in Nadine's little bedroom. I walked upstairs and tehre were Sylvia and Nadine on the living room couch. I went out, brought in Nadine's rainbow blanket, and brought it up. Both girls draped themselves in it and that was that.
On Friday morning, July 10th, I opened my eyes and didn't know where I was. It took a remarkably long time to figure it out. Nadine stayed in bed extremely late -- understandable. She had deserved a late night with her friend, and she had nothing to do in the morning but recuperate.
Jessica the nurse was coming at 11AM, and I hadn't even showered by then. Happily, Jessica was late. She changed Nadine's dressing -- Nadine said Jessica, who took it slow, was more gentle than the wound care specialist.
High-pitched squeals and shrieks eminated from upstairs -- Nadine's friend Claire had arrived. Nadine rushed up after Jessica left, and the three super-friends, Sylvia Claire and Nadine, gleefully "held court" together. I photographed them all on the couch, and a sleep-over was planned. While they had their wonderful giggle-time, Claire's mom Betty and I took a walk together.
I realize that being outside the hospital feels like a surreal coexistence of the normal and the abnormal, with one phase sometimes showing up more than the other, and it is hard to tell which will come up when. This can cause more anxiety than being in the hospital at times.
Barry, my husband, arrived about 6PM, went to the performance of Nadine's piece with me, and returned to the Klassen house with me and Nadine.
After dinner, Nadine wanted to take out Barry's 1989 Cabriolet convertible for a "spin" with Sylvia, and got permission. Sue, Barry, Victor, and I were all out there, a tense situation for Nadine who hadn't driven a car, let alone a stick shift car, for a long time, but she started it up perfectly and off they went into the warm night, with the convertible top down of course.
On Saturday July 11th Nadine went out shopping with Sylvia, the two girls going out on their own; later on she helped to cook dinner, a very bubbly time. Sue and I got to walk togetehr, noticing the wonderful after-the-rain color of the trees in the cloudy but extremely clear air.
An ordinary week-end was a true gift.
Tuesday, July 14, 2009
Normalcy -- Nadine Conducts Rehearsal and Hears Her String Trio Performed
About three weeks ago, Alice Kanack (of the Kanack School of Music and also a homeschooling mom) met Margaret Henry, Nadine's wonderful composition and theory teacher, in the hospital rec room. Margaret mentioned Nadine's composition ability, and in particular her trio for violin, viola and cello that had won the Howard Hansen young composers' competition. Alice said she was having a chamber music camp from July 6th through 10th and suggested that one of the advanced groups learn the trio and perform it at their concert on the 10th. Nadine was also invited to coach a rehearsal, and happily accepted.
Alice called early last week and Nadine agreed to coach the Thursday rehearsal at the school, which was on the day we were leaving MacDonald House -- she also asked for clarification on some passages, which meant everyone was taking it seriously. After Nadine's difficult and uncomfortable morning last Thursday, NAdine and I went off to the Kanack School for the rehearsal, with me toting camera and video.
NADINE SUDDENLY PERKED UP and felt wonderful -- and A NORMAL day ensued with her normal life, bubbliness, and creativity.
The school is in a nice large house on So. Clinton St. with a white picket fence and red trim; there was a recreation tent outside. Various rehearsals were going on all at once. NAdine's piece was happening upstairs, and there was Alice -- her daughter Daphne played violen, Isabella, another RPYO performer, played viola, and a young cellist named Ben rounded out the group. Alice, who had had sniffles or a sore throat the previous week, wore a mask. NAdine was able to take hers off.
The rehearsal started -- the piece was GORGEOUS. It was the first time either Nadine or I had heard the piece played by real instruments; we'd only heard the awful computer rendition. The piece was dignified, lyrical, and creative, in 6/4 time. Although the instruments were cohesive as a group, each one had its own identity. The piece "flowed" and the long slow ending was perfect.
Nadine also did an impressive (and fun) job conducting the rehearsal, in fully animated form. She asked for what she wanted, yet still paid attention to the young musicians' feelings. She asked for "snappy" notes at one point, and at another time she referred to one of her own passages as being "weird", and said she wanted it that way. She reminded me of contra dance rehearsals by asking for the players to "push" some parts forward timewise. After a break, the musicians "got it" at the beginning of the second half -- really nice.
______________
Friday July 6th was the "Big Day" for the concert, which consisted of about 9 performances including her piece. There was an outdoor pizza party first. Nadine put on a nice teeshirt and a patterned swishy long skirt, plus a really nice mottled blue silk scarf hand-dyed by Lauren Sample. She looked gorgeous and eminently non-sick.
There was pizza and company outside first and general socializing afterwards -- NAdine ended up in a circle of kids sitting under the big tent eating ice cream and later having a vigorous (card) game of "Pounce"/. Nobody, including Nadine, seemed to notice that she had anything like leukemia. She was an ordinary, highly social teen in her element.
The indoor concert was pretty full with a fun program, starting with littler kids (still amazingly well done) and ending with amazingly advanced playing. Nadine sat on a couch towards the back. I had to ro remind her to put her mask on, but also reminded her that she could remove it to take a bow if needed.
Nadine's piece sounded perfect! Alice gave a warm, tasteful intro after which Daphne, Ben, and Isabella played it beautifully. Barry and I sat proudly in the front row, with me video-ing. There was a large applause, and someone motioned to Nadine, who stood up, mask removed. She looked wonderful.
The concert ended with two more spectacular pieces, and a full orchestral piece passionately conducted by Alice -- it was nice to see her in action.
After the concert, Nadine was congratulated -- a violin teacher said she hoped the piece would go beyond Rochester. People were going out for ice cream. Nadine politely said she was too tired -- I'm glad she was able to recognize when she needed to rest.
I also experienced the joy of the normalcy that can be in Nadine's life, even with the other stuff she had to deal with.
I also felt that Thursday was definitely the right time for her to leave the "shelter" of the hospital and MacDonald House and be out in the "regular" world again.
Alice called early last week and Nadine agreed to coach the Thursday rehearsal at the school, which was on the day we were leaving MacDonald House -- she also asked for clarification on some passages, which meant everyone was taking it seriously. After Nadine's difficult and uncomfortable morning last Thursday, NAdine and I went off to the Kanack School for the rehearsal, with me toting camera and video.
NADINE SUDDENLY PERKED UP and felt wonderful -- and A NORMAL day ensued with her normal life, bubbliness, and creativity.
The school is in a nice large house on So. Clinton St. with a white picket fence and red trim; there was a recreation tent outside. Various rehearsals were going on all at once. NAdine's piece was happening upstairs, and there was Alice -- her daughter Daphne played violen, Isabella, another RPYO performer, played viola, and a young cellist named Ben rounded out the group. Alice, who had had sniffles or a sore throat the previous week, wore a mask. NAdine was able to take hers off.
The rehearsal started -- the piece was GORGEOUS. It was the first time either Nadine or I had heard the piece played by real instruments; we'd only heard the awful computer rendition. The piece was dignified, lyrical, and creative, in 6/4 time. Although the instruments were cohesive as a group, each one had its own identity. The piece "flowed" and the long slow ending was perfect.
Nadine also did an impressive (and fun) job conducting the rehearsal, in fully animated form. She asked for what she wanted, yet still paid attention to the young musicians' feelings. She asked for "snappy" notes at one point, and at another time she referred to one of her own passages as being "weird", and said she wanted it that way. She reminded me of contra dance rehearsals by asking for the players to "push" some parts forward timewise. After a break, the musicians "got it" at the beginning of the second half -- really nice.
______________
Friday July 6th was the "Big Day" for the concert, which consisted of about 9 performances including her piece. There was an outdoor pizza party first. Nadine put on a nice teeshirt and a patterned swishy long skirt, plus a really nice mottled blue silk scarf hand-dyed by Lauren Sample. She looked gorgeous and eminently non-sick.
There was pizza and company outside first and general socializing afterwards -- NAdine ended up in a circle of kids sitting under the big tent eating ice cream and later having a vigorous (card) game of "Pounce"/. Nobody, including Nadine, seemed to notice that she had anything like leukemia. She was an ordinary, highly social teen in her element.
The indoor concert was pretty full with a fun program, starting with littler kids (still amazingly well done) and ending with amazingly advanced playing. Nadine sat on a couch towards the back. I had to ro remind her to put her mask on, but also reminded her that she could remove it to take a bow if needed.
Nadine's piece sounded perfect! Alice gave a warm, tasteful intro after which Daphne, Ben, and Isabella played it beautifully. Barry and I sat proudly in the front row, with me video-ing. There was a large applause, and someone motioned to Nadine, who stood up, mask removed. She looked wonderful.
The concert ended with two more spectacular pieces, and a full orchestral piece passionately conducted by Alice -- it was nice to see her in action.
After the concert, Nadine was congratulated -- a violin teacher said she hoped the piece would go beyond Rochester. People were going out for ice cream. Nadine politely said she was too tired -- I'm glad she was able to recognize when she needed to rest.
I also experienced the joy of the normalcy that can be in Nadine's life, even with the other stuff she had to deal with.
I also felt that Thursday was definitely the right time for her to leave the "shelter" of the hospital and MacDonald House and be out in the "regular" world again.
Sunday, July 12, 2009
Leaving Home, Coming Home
"Home is anywhere outside of the hospital." (Nadine)
Thursday July 9th was the day we left MacDonald House. It was a roller-coaster of a day, from awful to exuberant all in one.
On Wednesday I had announced we were checking out on Thursday. The house was full and the clot was dealt with -- it was time for someone else to have the room, and for us to "leave the nest". The house manager booked our room for another family to arrive Thursday night.
There were bittersweet farewells and final meetings-up with people, and exchanges of contact info. Perhaps I hadn't realized how many friends we had made. I also ran into the finance director, an appealing lady who looked like a recreation leader -- we had a lovely interaction. There were many more people. I'd been in conversations with many of them where we'd affirmed together our absolute need to support our children no matter how strident we appeared. And shared stories of our children (and selves).
Nadine, unfortunately, was feeling pretty sick on Thursday, bad timing as we couldn't stay an extra day. She lay on the bed feeling miserable, and I felt miserable too.
Packing/departing has never been my talent -- now I was faced with an all-too-familiar nasty scramble, including the unpleasant results of poor pre-planning, Although I thought we hadn't brought much, I realized we'd indeed "moved in". I had to sort, box stuff, find papers, the works, plus doing laundry. After that I had to clean the room. All with poor Nadine lying on the bed feeling miserable while I scurried around.
Nadine was scheduled to go to the lab for another "timed" blood level test at 1:45, and I'd hoped to be completely packed and checked out by then; Nadine insisted I couldn't do it, and that we'd need to come back later to finish. I doggedly tried to get us out anyway. It was hard to see her in pain during all of the commotion.
Suddenly, she stood up and burst into tears. I held her as it all came out -- it was the first time she'd sobbed with me like this since her diagnosis. In the midst of the pain, I was relieved that finally she was letting it out.
I wondered if one reason these emotions didn't show up like this in the hospital was because the hospital was known as the place to be sick. MacDonald House was like a half-way station. Once out of the hospital (or MacDonald House) she might have felt that now she was supposed to be "normal", only she still had leukemia and she still was sick, even though she'd be out in the "normal" world. She might have even said she was afraid this could be a problem. She developed a nosebleed and I held her head while she stood over the sink; it ended before there could be worry.
I asked Nadine if she wanted to postpone the lab work until the next day, and she emphatically said yes. I called the clinic to ask, but the nurse called back saying that Dr. Bruckner wanted the results immediately, so we raced out of the house, clearly nowhere near ready to check out. We rushed into the lab, where I had to apologize for my lateness and tell the receptionist that Nadine had a timed test that had to happen right then. Less than 5 minutes later an expert and gentle tech did a painless job drawing Nadine's blood, and it was all over.
After that, Nadine had a WONDERFUL experience with a rehearsal of musicians performing her string trio, and came out of her sick feeling -- after that, things went well. I'll describe this magnificent experience in the next post.
After that, we returned to the house, and I finished packing and cleaned the room -- I realized that there had been no way to get out early. I vacuumed the floor, cleaned the bathroom, straightened up. Nadine insisted on helping with the vacuuming. I took some pictures (of course). The room had been "home-like". The wall paper trim near the ceiling had pictures of musical instruments including flute, piano, guitar, cello, etc., as if it had been designed just for us. The bay window drenched the room with sun.
I hauled out several loads of stuff, emptied the room, went downstairs, and told the receptionist the room was ready to be prepared for the incoming family.
Then I gathered up our food supplies from the kitchen and pantry, brought up the laundry, and packed the car. I sat down at the piano and played the Bach gigue for a final time. Sharon was downstairs and I got a photo taken with her. The executive director of the house warmly told me I was welcome to come back and visit.
I asked someone to take a photo of me and Nadine, and got one sitting by the Ronald MacDonald figure on the porch and another with some greenery.
We were allowed to keep our parking "pass" sticker, and were told we are always welcome to come back. We'll always be able to walk in the garden and visit the House, and of course to stay there if needed.
Finally we left to stay with our dear friends the Klassens in Webster. After the freeway drive, we arrived to a wonderful welcome. Hugs. Joy. Nadine finally with her friend Sylvia. Me being with my friend Sue, Sylvia's mother.
The end of an era. The beginning of another one.
Thursday July 9th was the day we left MacDonald House. It was a roller-coaster of a day, from awful to exuberant all in one.
On Wednesday I had announced we were checking out on Thursday. The house was full and the clot was dealt with -- it was time for someone else to have the room, and for us to "leave the nest". The house manager booked our room for another family to arrive Thursday night.
There were bittersweet farewells and final meetings-up with people, and exchanges of contact info. Perhaps I hadn't realized how many friends we had made. I also ran into the finance director, an appealing lady who looked like a recreation leader -- we had a lovely interaction. There were many more people. I'd been in conversations with many of them where we'd affirmed together our absolute need to support our children no matter how strident we appeared. And shared stories of our children (and selves).
Nadine, unfortunately, was feeling pretty sick on Thursday, bad timing as we couldn't stay an extra day. She lay on the bed feeling miserable, and I felt miserable too.
Packing/departing has never been my talent -- now I was faced with an all-too-familiar nasty scramble, including the unpleasant results of poor pre-planning, Although I thought we hadn't brought much, I realized we'd indeed "moved in". I had to sort, box stuff, find papers, the works, plus doing laundry. After that I had to clean the room. All with poor Nadine lying on the bed feeling miserable while I scurried around.
Nadine was scheduled to go to the lab for another "timed" blood level test at 1:45, and I'd hoped to be completely packed and checked out by then; Nadine insisted I couldn't do it, and that we'd need to come back later to finish. I doggedly tried to get us out anyway. It was hard to see her in pain during all of the commotion.
Suddenly, she stood up and burst into tears. I held her as it all came out -- it was the first time she'd sobbed with me like this since her diagnosis. In the midst of the pain, I was relieved that finally she was letting it out.
I wondered if one reason these emotions didn't show up like this in the hospital was because the hospital was known as the place to be sick. MacDonald House was like a half-way station. Once out of the hospital (or MacDonald House) she might have felt that now she was supposed to be "normal", only she still had leukemia and she still was sick, even though she'd be out in the "normal" world. She might have even said she was afraid this could be a problem. She developed a nosebleed and I held her head while she stood over the sink; it ended before there could be worry.
I asked Nadine if she wanted to postpone the lab work until the next day, and she emphatically said yes. I called the clinic to ask, but the nurse called back saying that Dr. Bruckner wanted the results immediately, so we raced out of the house, clearly nowhere near ready to check out. We rushed into the lab, where I had to apologize for my lateness and tell the receptionist that Nadine had a timed test that had to happen right then. Less than 5 minutes later an expert and gentle tech did a painless job drawing Nadine's blood, and it was all over.
After that, Nadine had a WONDERFUL experience with a rehearsal of musicians performing her string trio, and came out of her sick feeling -- after that, things went well. I'll describe this magnificent experience in the next post.
After that, we returned to the house, and I finished packing and cleaned the room -- I realized that there had been no way to get out early. I vacuumed the floor, cleaned the bathroom, straightened up. Nadine insisted on helping with the vacuuming. I took some pictures (of course). The room had been "home-like". The wall paper trim near the ceiling had pictures of musical instruments including flute, piano, guitar, cello, etc., as if it had been designed just for us. The bay window drenched the room with sun.
I hauled out several loads of stuff, emptied the room, went downstairs, and told the receptionist the room was ready to be prepared for the incoming family.
Then I gathered up our food supplies from the kitchen and pantry, brought up the laundry, and packed the car. I sat down at the piano and played the Bach gigue for a final time. Sharon was downstairs and I got a photo taken with her. The executive director of the house warmly told me I was welcome to come back and visit.
I asked someone to take a photo of me and Nadine, and got one sitting by the Ronald MacDonald figure on the porch and another with some greenery.
We were allowed to keep our parking "pass" sticker, and were told we are always welcome to come back. We'll always be able to walk in the garden and visit the House, and of course to stay there if needed.
Finally we left to stay with our dear friends the Klassens in Webster. After the freeway drive, we arrived to a wonderful welcome. Hugs. Joy. Nadine finally with her friend Sylvia. Me being with my friend Sue, Sylvia's mother.
The end of an era. The beginning of another one.
Wednesday
Wednesday was clinic-and-ultrasound day (to check on the clot). Nadine and I watched the fascinating moving images again. Nadine said she saw the clot, but I couldn't see anything. Because of timing, I had to give her her Fragmin injection in the ultraound room.
Dr. Bruckner made a brilliant observation at clinic. She noticed that Nadine's itchy rash was exactly where clothing covered her, and nowhere else. She suspected allergy to detergent, explaining that chemo can lead to new sensitivities. Since Nadine's Goodwill bash, she'd been wearing only clothing she'd bought there, so maybe it was THEIR detergent. I brought her home and she changed out of the Goodwill wardrobe -- and the itching got milder. I guess I've got some laundry to do now, rewashing the Goodwill stuff. A relief, though.
I got more info from Dr. Bruckner on The Clot. When Nadine's PICC (catheter) line was pulled out on July 4th, it dragged Nadine's clot from a deep vein into a superficial vein further from her heart. The clot lodged in that vein -- although it is blocking the vein, there is another "pathway" for Nadine's circulation, so all of Nadine's body still receives blood flow. The Fragmin should prevent new clots from forming around the old one. It will take a long time for the original clot to disappear, but at least for now things look stable.
The rest of Nadine's visit was amazingly routine -- Dr. Bruckner, unlike Laurie Johnson, thought Nadine's "counts" might drop, so we still had to be watchful. Nadine was getting hungry a lot but only able to eat a little at a time, so she was urged to "graze". Dr. Bruckner will be away for about 2 weeks -- I requested Dr. Mullen for her next appointment. He originally diagnosed her and is the head of the pediatric oncoloty department. I respect his knowledge. His son is going to be in the Roch Phil.Orchestra with Nadine in the fall, which adds some familiarity.
Eric the cheery radiant and beloved social worker, came over and chatted. He suggested Nadine meet TLC (Teens Living with Cancer), a Rochester based group that has a nearby space. That's completely her decision, although I'd like her go once and see who she meets. She already has plenty of friends. She's already joined the TLC Facebook group.
_________________
Bach has been a mainstay for me to play at the house, along with improvisations and infusions of Beethoven, Chopin and Enesco. I love to bring out the individual concurrent lines in Bach, while affirming the synergy among them. While Nadine rested after her clinic visit, I played for a long time, whatever came into my "head", this time Bach and a Latin style improvisation. Sometimes people listen. I don't want to disturb people. A dignified woman commented that my music "brought the house to life". I was honored. She turned out to be the executive director, and a nice person to talk with -- I learned a lot. I've been curious about how the house works.
That night, there was chicken and potato salad dinner prepared by a real chef -- what a treat.
Then there was a marionette show, with much pomp and elaborate set-up -- about 40 people, about 3/4 of them kids, watched. The puppeteer, who is attempting to go "full-time", is from Reno Nevada and was visiting his sister here. The music was "old strut style" (recorded) with narration and some history by the puppet man. The elaborately-costumed marionettes, "themed" to early-20th-century American entertainers, were quite amazing, and Nadine enjoyed it. Afterwards, Nadine tried out a marionette and did amazingly well at getting "walking" to happen. I accompanied her with a live rendition of some of the music that was on tape.
After the show was put away, Nadine and I played some tunes together, contra dance medley style. Montebello, Camel Hump, Reel Ti-Me, Coleraine, etc., ending, traditionally, with a waltz. We stopped before Nadine had a chance to tire out. It was a joy to hear her flute again, mixed with the bittersweetness of her reduced strength.
That night our bedtime reading was "Frog And Toad".
It would be our last night at The House. Bedtime.
Dr. Bruckner made a brilliant observation at clinic. She noticed that Nadine's itchy rash was exactly where clothing covered her, and nowhere else. She suspected allergy to detergent, explaining that chemo can lead to new sensitivities. Since Nadine's Goodwill bash, she'd been wearing only clothing she'd bought there, so maybe it was THEIR detergent. I brought her home and she changed out of the Goodwill wardrobe -- and the itching got milder. I guess I've got some laundry to do now, rewashing the Goodwill stuff. A relief, though.
I got more info from Dr. Bruckner on The Clot. When Nadine's PICC (catheter) line was pulled out on July 4th, it dragged Nadine's clot from a deep vein into a superficial vein further from her heart. The clot lodged in that vein -- although it is blocking the vein, there is another "pathway" for Nadine's circulation, so all of Nadine's body still receives blood flow. The Fragmin should prevent new clots from forming around the old one. It will take a long time for the original clot to disappear, but at least for now things look stable.
The rest of Nadine's visit was amazingly routine -- Dr. Bruckner, unlike Laurie Johnson, thought Nadine's "counts" might drop, so we still had to be watchful. Nadine was getting hungry a lot but only able to eat a little at a time, so she was urged to "graze". Dr. Bruckner will be away for about 2 weeks -- I requested Dr. Mullen for her next appointment. He originally diagnosed her and is the head of the pediatric oncoloty department. I respect his knowledge. His son is going to be in the Roch Phil.Orchestra with Nadine in the fall, which adds some familiarity.
Eric the cheery radiant and beloved social worker, came over and chatted. He suggested Nadine meet TLC (Teens Living with Cancer), a Rochester based group that has a nearby space. That's completely her decision, although I'd like her go once and see who she meets. She already has plenty of friends. She's already joined the TLC Facebook group.
_________________
Bach has been a mainstay for me to play at the house, along with improvisations and infusions of Beethoven, Chopin and Enesco. I love to bring out the individual concurrent lines in Bach, while affirming the synergy among them. While Nadine rested after her clinic visit, I played for a long time, whatever came into my "head", this time Bach and a Latin style improvisation. Sometimes people listen. I don't want to disturb people. A dignified woman commented that my music "brought the house to life". I was honored. She turned out to be the executive director, and a nice person to talk with -- I learned a lot. I've been curious about how the house works.
That night, there was chicken and potato salad dinner prepared by a real chef -- what a treat.
Then there was a marionette show, with much pomp and elaborate set-up -- about 40 people, about 3/4 of them kids, watched. The puppeteer, who is attempting to go "full-time", is from Reno Nevada and was visiting his sister here. The music was "old strut style" (recorded) with narration and some history by the puppet man. The elaborately-costumed marionettes, "themed" to early-20th-century American entertainers, were quite amazing, and Nadine enjoyed it. Afterwards, Nadine tried out a marionette and did amazingly well at getting "walking" to happen. I accompanied her with a live rendition of some of the music that was on tape.
After the show was put away, Nadine and I played some tunes together, contra dance medley style. Montebello, Camel Hump, Reel Ti-Me, Coleraine, etc., ending, traditionally, with a waltz. We stopped before Nadine had a chance to tire out. It was a joy to hear her flute again, mixed with the bittersweetness of her reduced strength.
That night our bedtime reading was "Frog And Toad".
It would be our last night at The House. Bedtime.
The Week Going On
Monday night after Erek left was sad yet strangely peaceful. Just us girls again. Nadine was a bit achy and itchy . This may sound silly, but we ended up reading children's picture-books from the the house library, including old-standards Madeline and Curious George plus a silly book about two grandmas who disagree. It was hilarious, and the evening ended with laughter and smiles.
My first night alone with Nadine since this all started.
________________________________
I called the on-call doctor about Nadine's itchiness -- Dr. Milner thought it had to do with the Mercaptopurine (her nightly oral chemo medicine), and that it wasn't serious. Earlier, I had gotten her some Pedialyte to bolster her electrolytes without using Gatorade (with its additives), but the Pedialyte tasted so dreadful that she wouldn't drink it, so we compromised -- I bought one more bottle of Gatorade (the only option at that hour) and the next day I got her Gatorade powder, which has fewer additives than the bottled stuff and at least she likes it. Her appetite had gone down, which is why the extra electrolytes, in addition to plain liquids, were important.
ON TUESDAY, realizing that oranges can be peeled and are therefore okay, I washed and peeled an orange, arranged the slices prettily, brought them to sleeping Nadine, and left. When I returned, she smiled about the orange slices. She also felt better. Yay.
She went "up and down" for the early part of the day, sometimes lying down and looking forlorn,asking for my company -- I cuddled with her and held her hand. The day, cold and dreary, matched my mood. After breakfast she wanted to see if she remembered "Mousetrap", a game on the shelves -- I got it down, but there were no instructions and neither of us got very far. I plan to get a fresh game to contribute to the house. It started to rain.
Laurie Johnson, the nurse practitioner, called and said Nadine's counts were nicely high, and that they might stay up. It's possible she'll be able to drop in on the contra dance next week. Laurie also said that the clot wasn't considered too worrisome -- if it had been, it would have been treated more aggressively. She assured me that my concerns hadn't been frivolous.
____________________
A WALK AND AN OBSERVATION
I remember that when Nadine got fussy as a baby, if she wasn't hungry the only cure would be to bring her outside into fresh air for a walk. These days, walking outside often helps her feel better too, even if it's hard to get it started. For the record, it works on me as well -- even when it's bitter-cold out (my un-favorite), if I feel yucky I periodically slam on multi-layers of down and wool and haul off for a snow-laden walk, and suddenly I'm okay. Walks have been a mainstay for me lately.
Late Tuesday afternoon, I coaxed Nadine out for a walk, as she didn't look as weak as earlier although she still felt "blah".
It worked! On went her pink fleece hat again -- it had stopped raining but was sun-and-cloud mixture, so she could wear shorts. We went down the dirt path to the river trail, and walked jauntily if slowly to the right admiring the gently curved path, the greenery, and an ancient-looking huge tree wiht huge globular contours on its thick trunk. We walked slowly but she had "oomph". We rested on a bench facing the canal -- a canalway trail map in front showed we could walk this trail for hundreds of miles! After Nadine felt she'd rested enough, we continued on to an old cement bridge, on which we took photos of each other against the scene of canal and bridges. She wasn't up for going further, so we returned, stopping at the bench again, and climbed the very gentle path to the house, refreshed.
Nadine mentioned that she can walk well, but still has trouble if she tries to put on a burst of speed.
_______________________________
The house, which accommodates 20 families, was developing a "party" atmosphere at times. Tinkling conversations appeared in some lounges. It had been nice although subdued when we first arrived. Suddenly there seemed to be an influx of chilren, and also adults who shared exuberance as well as sorrows. I hadn't spent much time there while Nadine was hospitalized -- it was a quick dash downstairs, breakfast, pack food for the day, rush out to the hospital, slog back late at night, and flop into bed. Now that Nadine was staying at the house, I was there more often. It was a perfect respite and half-way place for Nadine with me. She perioically appeared, masked or not depending on the circumstances, for meals, relaxation, puzzles, cooking, and conversations. I had met a lady, Sharon, whose 13-year-old son had a kidney transplant. Her father is a friend of my husband -- they live in Buffalo. Her daughter Rianna is 11 and a quintessence of sweetness and "spice", dancing ballet with an equivalent passion that Nadine applies to music. Sharon is exuberant and we had some boisterous interchanges even while sharing our children's stories. I visited with our new Amish friends, Melvin and Mary, whose daughter amazed me -- in the hospital, with a tracheotomy (tube in the throat), she sat with happiness in her eyes. I met many ladies who had delivered babies at between 2 and 3 pounds, and under, who had to wait to hold their newborns, and then it was for a short time. There were parents supporting children with cancer and other illness. The cooperation and caring was amazing, as was the humor that abounded in this beautiful place.
Dinner that night was a Mexican "fiesta" with excellent baked beans, prepared by a local mother's group. One of them expressed an interest in homeschooling; I quickly reverted to my homeschool-board-member role and got her an info packet.
That night Nadine and I read more children's books -- a fun ending to a mottly day.
My first night alone with Nadine since this all started.
________________________________
I called the on-call doctor about Nadine's itchiness -- Dr. Milner thought it had to do with the Mercaptopurine (her nightly oral chemo medicine), and that it wasn't serious. Earlier, I had gotten her some Pedialyte to bolster her electrolytes without using Gatorade (with its additives), but the Pedialyte tasted so dreadful that she wouldn't drink it, so we compromised -- I bought one more bottle of Gatorade (the only option at that hour) and the next day I got her Gatorade powder, which has fewer additives than the bottled stuff and at least she likes it. Her appetite had gone down, which is why the extra electrolytes, in addition to plain liquids, were important.
ON TUESDAY, realizing that oranges can be peeled and are therefore okay, I washed and peeled an orange, arranged the slices prettily, brought them to sleeping Nadine, and left. When I returned, she smiled about the orange slices. She also felt better. Yay.
She went "up and down" for the early part of the day, sometimes lying down and looking forlorn,asking for my company -- I cuddled with her and held her hand. The day, cold and dreary, matched my mood. After breakfast she wanted to see if she remembered "Mousetrap", a game on the shelves -- I got it down, but there were no instructions and neither of us got very far. I plan to get a fresh game to contribute to the house. It started to rain.
Laurie Johnson, the nurse practitioner, called and said Nadine's counts were nicely high, and that they might stay up. It's possible she'll be able to drop in on the contra dance next week. Laurie also said that the clot wasn't considered too worrisome -- if it had been, it would have been treated more aggressively. She assured me that my concerns hadn't been frivolous.
____________________
A WALK AND AN OBSERVATION
I remember that when Nadine got fussy as a baby, if she wasn't hungry the only cure would be to bring her outside into fresh air for a walk. These days, walking outside often helps her feel better too, even if it's hard to get it started. For the record, it works on me as well -- even when it's bitter-cold out (my un-favorite), if I feel yucky I periodically slam on multi-layers of down and wool and haul off for a snow-laden walk, and suddenly I'm okay. Walks have been a mainstay for me lately.
Late Tuesday afternoon, I coaxed Nadine out for a walk, as she didn't look as weak as earlier although she still felt "blah".
It worked! On went her pink fleece hat again -- it had stopped raining but was sun-and-cloud mixture, so she could wear shorts. We went down the dirt path to the river trail, and walked jauntily if slowly to the right admiring the gently curved path, the greenery, and an ancient-looking huge tree wiht huge globular contours on its thick trunk. We walked slowly but she had "oomph". We rested on a bench facing the canal -- a canalway trail map in front showed we could walk this trail for hundreds of miles! After Nadine felt she'd rested enough, we continued on to an old cement bridge, on which we took photos of each other against the scene of canal and bridges. She wasn't up for going further, so we returned, stopping at the bench again, and climbed the very gentle path to the house, refreshed.
Nadine mentioned that she can walk well, but still has trouble if she tries to put on a burst of speed.
_______________________________
The house, which accommodates 20 families, was developing a "party" atmosphere at times. Tinkling conversations appeared in some lounges. It had been nice although subdued when we first arrived. Suddenly there seemed to be an influx of chilren, and also adults who shared exuberance as well as sorrows. I hadn't spent much time there while Nadine was hospitalized -- it was a quick dash downstairs, breakfast, pack food for the day, rush out to the hospital, slog back late at night, and flop into bed. Now that Nadine was staying at the house, I was there more often. It was a perfect respite and half-way place for Nadine with me. She perioically appeared, masked or not depending on the circumstances, for meals, relaxation, puzzles, cooking, and conversations. I had met a lady, Sharon, whose 13-year-old son had a kidney transplant. Her father is a friend of my husband -- they live in Buffalo. Her daughter Rianna is 11 and a quintessence of sweetness and "spice", dancing ballet with an equivalent passion that Nadine applies to music. Sharon is exuberant and we had some boisterous interchanges even while sharing our children's stories. I visited with our new Amish friends, Melvin and Mary, whose daughter amazed me -- in the hospital, with a tracheotomy (tube in the throat), she sat with happiness in her eyes. I met many ladies who had delivered babies at between 2 and 3 pounds, and under, who had to wait to hold their newborns, and then it was for a short time. There were parents supporting children with cancer and other illness. The cooperation and caring was amazing, as was the humor that abounded in this beautiful place.
Dinner that night was a Mexican "fiesta" with excellent baked beans, prepared by a local mother's group. One of them expressed an interest in homeschooling; I quickly reverted to my homeschool-board-member role and got her an info packet.
That night Nadine and I read more children's books -- a fun ending to a mottly day.
Saturday, July 11, 2009
Erek Leaves after Completing Puzzle. Also -- Visitors. And Monday. .
Highlights first: Erek left for DC after completing the legendary tall 3D Empire State Puzzle. In many ways, to me the puzzle symbolized some of our stay at the House. Also, we had excellent visitors. And there is assorted news of Monday.
___________
Monday was a long day. In the morning, Nadine was itchy and fidgeted in her bed. I had to give her the injection for the first time alone, with Erek standing there.
Jessie the nurse called and said she could come at about 1PM. Nadine got some more rest (she was still tired), and after that she and Erek had some more time to do the puzzle and enjoy each other's company. I went to CVS to pick up Aveeno lotion for the itch, and came back to find Erek and Nadine still working on the puzzle,getting serious -- it was fun to watch the building "grow"/. I half-joked that Erek's goal was to finish the puzzle before leaving on the plane at about 6:25 that evening. Sylvia arrived, and helped the operation.
The visiting nurse,m Jessie, arrived, for about 1 1/2 hours of nurse visit. She is vivacious,short, slender and "cute", with "big hair" and great shoes. She's extremely thorough and full of helpful practical suggestions. She humored me and put on a mask while changing Nadine's dressing, even though she didn't think it was necessary at home. She figured out a neat way to make the dressing cover the wound better.
When I came out, THE PUZZLE WAS DONE!!!! Erek had finished it!!! It had been, in a way, a symbol of our stay at MacDonald House. It really did look impressive.
Sue (Sylvia's mother), one of my closest friends, arrived, and we had a wonderful hug.
Nadine was a bit "under the weather" and still itchy, but she perked up when more friends arrived.
Some wonderful friends from Vermont, the Guertins, arrived -- they are dance-festival enthusiasts and also math people. Diane and Dave and three of their four kids (all teens) -- Gillian, Stuart and Neil. All are close friends of Nadine, and I enjoy the parents as well. A I'd felt sad about not seeing the friends I knew at music festivals, and there were 5 of them right there! They happened to be "passing through" -- what a treat! It was a boisterous and fun reunion, starting with a "tour", going out on to the deck until it rained too hard to stay out there, so we commandeered the large back and filled it with the 10 of us. The five "kids" (including Nadine) stuffed themselves onto one couch and put feet on the table for show-off style. This sparked parents with cameras. They were hugging, and arm in arm, and some of them gleefully petted Nadine's fuzzy head. There was merry talk of family reunion, mishaps, and other fun stuff. When it was time for the Guertins to leavethe kids didhn't want to leave the couch. Diane suggested that perhaps the three "kids" could come back to stay for an extended time.
Nadine had acted like she had no illness whatsoever -- the wonder of friends and long-distance visits. I, too, was thrilled.
Erek, Nadine, and I were alone again after Sue and Sylvia left. There was about a half hour of time for them to visit before I'd be taking Erek to the airport. After some pleasantries, I left so they could have some time without me.
It had been a wonderful visit. I'd enjoyed his company, he'd been a huge help, and I'd learned a lot. Erek and Nadine had much time to enjoy their friendship.
Finally, it ws time to take Erek to the airport -- Erek and Nadine hugged, and Erek and I left together. I appreciated the quiet of the drive. We hugged briefly at the Arrivals area, and he was off.
Did I cry after that? You bet!
Then -- back to the house, and to Nadine.
___________
Monday was a long day. In the morning, Nadine was itchy and fidgeted in her bed. I had to give her the injection for the first time alone, with Erek standing there.
Jessie the nurse called and said she could come at about 1PM. Nadine got some more rest (she was still tired), and after that she and Erek had some more time to do the puzzle and enjoy each other's company. I went to CVS to pick up Aveeno lotion for the itch, and came back to find Erek and Nadine still working on the puzzle,getting serious -- it was fun to watch the building "grow"/. I half-joked that Erek's goal was to finish the puzzle before leaving on the plane at about 6:25 that evening. Sylvia arrived, and helped the operation.
The visiting nurse,m Jessie, arrived, for about 1 1/2 hours of nurse visit. She is vivacious,short, slender and "cute", with "big hair" and great shoes. She's extremely thorough and full of helpful practical suggestions. She humored me and put on a mask while changing Nadine's dressing, even though she didn't think it was necessary at home. She figured out a neat way to make the dressing cover the wound better.
When I came out, THE PUZZLE WAS DONE!!!! Erek had finished it!!! It had been, in a way, a symbol of our stay at MacDonald House. It really did look impressive.
Sue (Sylvia's mother), one of my closest friends, arrived, and we had a wonderful hug.
Nadine was a bit "under the weather" and still itchy, but she perked up when more friends arrived.
Some wonderful friends from Vermont, the Guertins, arrived -- they are dance-festival enthusiasts and also math people. Diane and Dave and three of their four kids (all teens) -- Gillian, Stuart and Neil. All are close friends of Nadine, and I enjoy the parents as well. A I'd felt sad about not seeing the friends I knew at music festivals, and there were 5 of them right there! They happened to be "passing through" -- what a treat! It was a boisterous and fun reunion, starting with a "tour", going out on to the deck until it rained too hard to stay out there, so we commandeered the large back and filled it with the 10 of us. The five "kids" (including Nadine) stuffed themselves onto one couch and put feet on the table for show-off style. This sparked parents with cameras. They were hugging, and arm in arm, and some of them gleefully petted Nadine's fuzzy head. There was merry talk of family reunion, mishaps, and other fun stuff. When it was time for the Guertins to leavethe kids didhn't want to leave the couch. Diane suggested that perhaps the three "kids" could come back to stay for an extended time.
Nadine had acted like she had no illness whatsoever -- the wonder of friends and long-distance visits. I, too, was thrilled.
Erek, Nadine, and I were alone again after Sue and Sylvia left. There was about a half hour of time for them to visit before I'd be taking Erek to the airport. After some pleasantries, I left so they could have some time without me.
It had been a wonderful visit. I'd enjoyed his company, he'd been a huge help, and I'd learned a lot. Erek and Nadine had much time to enjoy their friendship.
Finally, it ws time to take Erek to the airport -- Erek and Nadine hugged, and Erek and I left together. I appreciated the quiet of the drive. We hugged briefly at the Arrivals area, and he was off.
Did I cry after that? You bet!
Then -- back to the house, and to Nadine.
RELEASE from the Hospital!
On Sunday July 5th Nadine was released from the hospital! Erek returned home to DC the next day. The end of an era.
I gave Nadine her clot-medicine injection under cheery nurse Heather's watchful eye. There were prescriptions, discharge papers and care instructions. Dr. Milner gave Nadine a final check and approved the discharge. I was still concerned about the clot, and in all the rush I felt bewildered, but I somehow stumbled through the discharge routine without delaying it further. We packed the stuff, of which there was mercifully little. And then we left!!
We were OUT!! Erek, Nadine, Barry and I went to MacDonald House together, whee they sat on the couch and visited.
After Barry left, Erek and Nadine continued work on the monstrous 3-D Empire State Building puzzle that they'd started a few days earlier. I couldn't get a single piece in, but they got rows and slabs and added new layers to the very tall building.
Erek and Nadine were having a fine time with the puzzle and I went to bed. At first I told Nadine she should go to bed early. Then I remembered it was her first night "free" and also her last night with Erek, who was returning to DC the next day. This would end another era.
SO -- I changed my mind and told Nadine to go to bed whenever she wanted. She smiled.
______________________________
I gave Nadine her clot-medicine injection under cheery nurse Heather's watchful eye. There were prescriptions, discharge papers and care instructions. Dr. Milner gave Nadine a final check and approved the discharge. I was still concerned about the clot, and in all the rush I felt bewildered, but I somehow stumbled through the discharge routine without delaying it further. We packed the stuff, of which there was mercifully little. And then we left!!
We were OUT!! Erek, Nadine, Barry and I went to MacDonald House together, whee they sat on the couch and visited.
After Barry left, Erek and Nadine continued work on the monstrous 3-D Empire State Building puzzle that they'd started a few days earlier. I couldn't get a single piece in, but they got rows and slabs and added new layers to the very tall building.
Erek and Nadine were having a fine time with the puzzle and I went to bed. At first I told Nadine she should go to bed early. Then I remembered it was her first night "free" and also her last night with Erek, who was returning to DC the next day. This would end another era.
SO -- I changed my mind and told Nadine to go to bed whenever she wanted. She smiled.
______________________________
Wednesday, July 8, 2009
RELIEF, SILLINESS, SUNSHINE, AND FIREWORKS
Friday ended in fun and silliness, despite the "blah" day. Erek and Chrisanne, the competent "charge nurse" who calls Nadine "Beautiful Nadine", devised a pun on the term "drawing labs", followed by a "drawing contest" in which Erek won with his stick-figure drawing of Chrisanne drawing a lab dog.
Nadine fell in love with --- CUCUMBERS. She even placed an order for a plate of cucumbers from downstairs. There was merriment and laughter through Friday evening, clot or no clot.
____________
Saturday, which also started as a tough day, ended in a beautiful walk leading to a beautiful, sparkly evening.
Nadine was feeling "blah", as was I (detailed in my last post). I finally suggested a walk.
On went Nadine's pink fleece hat plus her tank top, and Barry, Erek, Nadine and I marched out. The play deck wasn't open, so we took the elevator to the ground floor and walked past the ultrasound lab towards the tunnel under Crittendon Street, found it locked, and discovered a green-lawned courtyard completely surrounded by brick buildings, with bright yellow tables and chairs, a fat squirrel, and a view of sky --it felt like our own secret hide-away. later, we entered again (thankfully we weren't locked out), went past the cafeteria, and resurfaced outside, crossing Crittendon Street, and enjoying the sun and flowers. At the picnic tables, Nadine happily stepped up and down, on and off the picnic benches, delighting in her strength and balance. I tired the same maneuver with no success (other than getting them to laugh at me).
Somehow the walk had lifted Nadine's mood perfectly. Mine of course followed suit.
FIREWORKS
Although Nadine was still in the hospital on July 4th, someone told us we could get a great view of the fireworks from the upper deck of the hospital parking lot.
First, Barry, Erek and I had dinner at MacDonald House. Nadine telephoned and asked if I could get her some cucumbers. Cucumbers? Fourth of July? Well, okay -- I dropped off Barry and Erek and sped off in search of a grocery store. Tops had 'em so I rushed them to Nadine, hoping not to miss the fireworks. Nadine was ecstatic. Nadine "signed herself out" at the nurses' station and Erek, Nadine and I walked to the top of the parking lot, where we were treated to an amazing panorama of silhouetted buildings against the cobalt and orange sky, and fireworks in at lesat three different locations around us. It was like a party up there, including kids with various medical equipment, and other people gazing up. Barry arrived in his 1980s black Cabriolet converible. We wrapped ourselves in blankets, and all four of us watched happily as the lights, booms, and patterns paraded around us.
Nadine munched on her cucumber as if it was an ice cream cone. She was a beautiful sight in her pink fleece hat, wrapped in her rainbow blanket. Erek, with his extreme "mohawk" hair, stood beside her also wrapped in a blanket.
After the "show", Barry and I drove off in the convertible and re-parked it downstairs, leaving Erek and Nadine to admire the night sky -- we walked back to the hospital room, and Nadine and Erek joined us. A perfect "night out" from the hospital.
Barry stayed overnight with Nadine, and Erek and I walked back in the cool dark night to MacDonald House.
Nadine fell in love with --- CUCUMBERS. She even placed an order for a plate of cucumbers from downstairs. There was merriment and laughter through Friday evening, clot or no clot.
____________
Saturday, which also started as a tough day, ended in a beautiful walk leading to a beautiful, sparkly evening.
Nadine was feeling "blah", as was I (detailed in my last post). I finally suggested a walk.
On went Nadine's pink fleece hat plus her tank top, and Barry, Erek, Nadine and I marched out. The play deck wasn't open, so we took the elevator to the ground floor and walked past the ultrasound lab towards the tunnel under Crittendon Street, found it locked, and discovered a green-lawned courtyard completely surrounded by brick buildings, with bright yellow tables and chairs, a fat squirrel, and a view of sky --it felt like our own secret hide-away. later, we entered again (thankfully we weren't locked out), went past the cafeteria, and resurfaced outside, crossing Crittendon Street, and enjoying the sun and flowers. At the picnic tables, Nadine happily stepped up and down, on and off the picnic benches, delighting in her strength and balance. I tired the same maneuver with no success (other than getting them to laugh at me).
Somehow the walk had lifted Nadine's mood perfectly. Mine of course followed suit.
FIREWORKS
Although Nadine was still in the hospital on July 4th, someone told us we could get a great view of the fireworks from the upper deck of the hospital parking lot.
First, Barry, Erek and I had dinner at MacDonald House. Nadine telephoned and asked if I could get her some cucumbers. Cucumbers? Fourth of July? Well, okay -- I dropped off Barry and Erek and sped off in search of a grocery store. Tops had 'em so I rushed them to Nadine, hoping not to miss the fireworks. Nadine was ecstatic. Nadine "signed herself out" at the nurses' station and Erek, Nadine and I walked to the top of the parking lot, where we were treated to an amazing panorama of silhouetted buildings against the cobalt and orange sky, and fireworks in at lesat three different locations around us. It was like a party up there, including kids with various medical equipment, and other people gazing up. Barry arrived in his 1980s black Cabriolet converible. We wrapped ourselves in blankets, and all four of us watched happily as the lights, booms, and patterns paraded around us.
Nadine munched on her cucumber as if it was an ice cream cone. She was a beautiful sight in her pink fleece hat, wrapped in her rainbow blanket. Erek, with his extreme "mohawk" hair, stood beside her also wrapped in a blanket.
After the "show", Barry and I drove off in the convertible and re-parked it downstairs, leaving Erek and Nadine to admire the night sky -- we walked back to the hospital room, and Nadine and Erek joined us. A perfect "night out" from the hospital.
Barry stayed overnight with Nadine, and Erek and I walked back in the cool dark night to MacDonald House.
Tuesday, July 7, 2009
BLOOD CLOT -- "May I please scratch my head?"
Really, this wasn't funny. Nadine developed a blood clot related to her PICC (internal catheter) line, which had to be removed. She's still dealing with the clot. Apparently, this isn't uncommon.
Tthere was an AMAZINGLY gift to be grateful for. The PICC line lasted through the administration of 24 continuous hours of dangerous-to-the-kidneys high-dose methatrexate chemo, three-plus days of continuous bicarbonate for alkalinizing her urine (kidney protectant), and the leucovorin needed to flush out the methatrexate to protect her kidneys. If the line hadn't lasted, it could have been a real disaster, much worse than it turned out to be.
The full story -- On Friday July 3rd, Nadine's methatrexate level was almost down to hospital-release level -- freedom was in the air.
Unlike on Thursday, Nadine was no longer hurting all over, but she felt a lingering pain in her left arm where her PICC catheter line (for giving medication) was located. Chrisanne, one of the nurses, was right "on top of" it and measured Nadine's arm diameter -- it had gotten larger, and Chrisanne suspected a clot. Nadine got an ultrasound -- I was fascinated by the images of muscle (resembling sea water) plus bright-blue splotches for veins and red splotches for arteries.
However, I had a sick feeling in my stomach, feeling that something was wrong.
On Saturday July 4th we learned she had a CLOT. Happily, the methatrexate levels were down by then. Her PICC line was unceremoniously pulled out by the resident. I had hoped for the PICC team, but they were away for the week-end. Oh well, this really was a simple procedure, unlike its insertion.
Still -- a clot? This could travel. Who knew where it could go?
Nadine was crying in bed. She said she was overwhelmed. It was the first time I'd seen her cry for a long time. Somehow we'd learned to manage cancer, serious as it was, but having another problem on top of it seemed like the figurative straw on the camel's back.
I wanted to learn more both about the clot and how to deal with it. Nadine wanted to know how she could and couldn't move her body. We knew she needed some restrictions, but not which.
It was July 4th. Sickness doesn't take a vacation, but people do. There were few if any support staff and even docs/nurses, and there seemed to be many crises around us; I couldn't find people to answer questions. People seemed uncharacteristically curt and unresponsive. I felt our concerns were being "blown off " and regarded as frivolous. I finally learned she could walk, practice flute in small-ish increments, and not raise her arms suddenly or lift weights.
An itchy Nadine asked "Is it okay to raise my arm to scratch my head?" and sent me out to ask a doc. It took a while and the doc seemed exasperated, and also looked exhausted. The question might have seemed silly to them, and even silly when written about but darn it, it was important to her (and me).
Lingering doubts plagued me -- "bad mom" feelings added themselves to the stress. I didn't want my family to know how awful I felt, and began to pace the halls, feeling alone.
She'd need at least 30 days of daily injections of medicine (Fragmin) into the subcutaneous tissue near her navel. Fragmin stings. I feel bad for Nadine.
Nadine could choose to do her own injections or have me do them. She chose me. Nicole showed me on Saturday, and on Sunday Heather explained it again and I did it. It felt like a huge deal even with a self-retracting needle. Wash hands, swab her belly, open the pre-loaded syringe, pull off the cap (exposing the small needle), hold the syringe about an inch over her belly, quickly bring the needle in, push the plunger, release, count 5 seconds, release the skin. Finished. It felt clumsy the first time or two; after that I soon became a "pro".
I felt somewhat better when I learned later on that Denise, the head nurse, was going to be Nadine's nurse for the evening -- she reassured me she'd be there all night for her. I shared some of my concerns with her, and she responded positively, confirming that indeed my feelings and questions were normal.
I eventually learned that although her clot needed to be watched and treated, it wasn't the worst kind.
On Monday when Laurie, the nurse practitioner of Nadine's care tearm, was available for questions, I got more information on clots in general and Nadine's in particular and finally I'm able to take this, too, more stride. It's amazing how that happens.
Tthere was an AMAZINGLY gift to be grateful for. The PICC line lasted through the administration of 24 continuous hours of dangerous-to-the-kidneys high-dose methatrexate chemo, three-plus days of continuous bicarbonate for alkalinizing her urine (kidney protectant), and the leucovorin needed to flush out the methatrexate to protect her kidneys. If the line hadn't lasted, it could have been a real disaster, much worse than it turned out to be.
The full story -- On Friday July 3rd, Nadine's methatrexate level was almost down to hospital-release level -- freedom was in the air.
Unlike on Thursday, Nadine was no longer hurting all over, but she felt a lingering pain in her left arm where her PICC catheter line (for giving medication) was located. Chrisanne, one of the nurses, was right "on top of" it and measured Nadine's arm diameter -- it had gotten larger, and Chrisanne suspected a clot. Nadine got an ultrasound -- I was fascinated by the images of muscle (resembling sea water) plus bright-blue splotches for veins and red splotches for arteries.
However, I had a sick feeling in my stomach, feeling that something was wrong.
On Saturday July 4th we learned she had a CLOT. Happily, the methatrexate levels were down by then. Her PICC line was unceremoniously pulled out by the resident. I had hoped for the PICC team, but they were away for the week-end. Oh well, this really was a simple procedure, unlike its insertion.
Still -- a clot? This could travel. Who knew where it could go?
Nadine was crying in bed. She said she was overwhelmed. It was the first time I'd seen her cry for a long time. Somehow we'd learned to manage cancer, serious as it was, but having another problem on top of it seemed like the figurative straw on the camel's back.
I wanted to learn more both about the clot and how to deal with it. Nadine wanted to know how she could and couldn't move her body. We knew she needed some restrictions, but not which.
It was July 4th. Sickness doesn't take a vacation, but people do. There were few if any support staff and even docs/nurses, and there seemed to be many crises around us; I couldn't find people to answer questions. People seemed uncharacteristically curt and unresponsive. I felt our concerns were being "blown off " and regarded as frivolous. I finally learned she could walk, practice flute in small-ish increments, and not raise her arms suddenly or lift weights.
An itchy Nadine asked "Is it okay to raise my arm to scratch my head?" and sent me out to ask a doc. It took a while and the doc seemed exasperated, and also looked exhausted. The question might have seemed silly to them, and even silly when written about but darn it, it was important to her (and me).
Lingering doubts plagued me -- "bad mom" feelings added themselves to the stress. I didn't want my family to know how awful I felt, and began to pace the halls, feeling alone.
She'd need at least 30 days of daily injections of medicine (Fragmin) into the subcutaneous tissue near her navel. Fragmin stings. I feel bad for Nadine.
Nadine could choose to do her own injections or have me do them. She chose me. Nicole showed me on Saturday, and on Sunday Heather explained it again and I did it. It felt like a huge deal even with a self-retracting needle. Wash hands, swab her belly, open the pre-loaded syringe, pull off the cap (exposing the small needle), hold the syringe about an inch over her belly, quickly bring the needle in, push the plunger, release, count 5 seconds, release the skin. Finished. It felt clumsy the first time or two; after that I soon became a "pro".
I felt somewhat better when I learned later on that Denise, the head nurse, was going to be Nadine's nurse for the evening -- she reassured me she'd be there all night for her. I shared some of my concerns with her, and she responded positively, confirming that indeed my feelings and questions were normal.
I eventually learned that although her clot needed to be watched and treated, it wasn't the worst kind.
On Monday when Laurie, the nurse practitioner of Nadine's care tearm, was available for questions, I got more information on clots in general and Nadine's in particular and finally I'm able to take this, too, more stride. It's amazing how that happens.
Upsy Downsy Upsy Downsy Upsy......
Up-down-up-down just about describes Wednesday July 1st through the 5th -- glorious moments and disappointing moments waving back and forth, both medically and otherwise.
On Wednesday July 1st Nadine felt pretty miserable -- understandable with the huge slug of chemo medicines she got for the "intensification" cycle, but still hard to handle. My mood, not surprisingly, often fluctuates with hers. Eventually, Erek and I took a walk in the hot sun by the Erie canal with its surrounding greenery -- the company and conversation, the physical conditioning, and the contact with fresh air and trees are amazingly welcome. It helped me cope better with seeing the wilted Nadine who greeted us after we returned. I was still exhausted though, but felt that perhaps a game of "hearts" would distract her from her misery. The game took so long, though, that I fell asleep, and Nadine was pretty tired as well. Eventually we all gave up and I left for the night, getting thoroughly lost in the parking garage as I stumbled around in search of my car. Not my best night.
The next day, Thursday July 2nd, I got to the hospital way too late -- it seemed like the previous night extended into the next morning and I could get little done right. Nadine's blood counts were up but she still felt awful. I knew it was chemo pain rather than medical downsliding, but it still hurt to see her that way.
Sitting on her bed, I allowed myself to cry and told her it hurt to see her feeling this bad. She gave me a little smile and looked relieved to see me express my sadness. I guess my new friend Raylene, who had encouraged me to share not-so-happy emotions with her if I felt them, was right -- it reinforces her knowledge that I care. I felt better too after crying.
______________
Beth Schemp, the wound care specialist, arrived and removed Nadine's dressing to inspect the "hole" left in Nadine's chest after her port was removed. Happily, pronounced it healing nicely. This ws especially meaningful to me because of the previous lack of healing. Beth expertly changed the Aqua-Cel dressing, explaining the process again so I can do the job if needed. Cheryl Gillette also came -- she is the expert nurse who installed Nadine's PICC line (peripherally inserted central catheter), which replaced the removed port. Cheryl showed me the sterile procedure for changing the PICC line dressing, and I got to flush the line with saline. I'm always on the look-out for people to ask for if future procedures are needed -- Beth and Cheryl are definitely on my list.
Oh yes, I ran into the surgeon who I'd been told had insisted that he wouldn't put another port in for Nadine, even though Dr. Bruckner had said she'd approve it. He pleasantly announced the he'd talked with Dr. Bruckner, and that there was time. "We'll talk", he said. "You've made my day", I answered.
Barry arrived and had dinner with us; then we went back up to see Nadine. Erek left early and I stayed on to consult with two of the doctors.
Before I left, I took Nadine's hand and she gave me one of her radiant smiles.
HER SMILE LEFT ME SMILING TOO.
I
On Wednesday July 1st Nadine felt pretty miserable -- understandable with the huge slug of chemo medicines she got for the "intensification" cycle, but still hard to handle. My mood, not surprisingly, often fluctuates with hers. Eventually, Erek and I took a walk in the hot sun by the Erie canal with its surrounding greenery -- the company and conversation, the physical conditioning, and the contact with fresh air and trees are amazingly welcome. It helped me cope better with seeing the wilted Nadine who greeted us after we returned. I was still exhausted though, but felt that perhaps a game of "hearts" would distract her from her misery. The game took so long, though, that I fell asleep, and Nadine was pretty tired as well. Eventually we all gave up and I left for the night, getting thoroughly lost in the parking garage as I stumbled around in search of my car. Not my best night.
The next day, Thursday July 2nd, I got to the hospital way too late -- it seemed like the previous night extended into the next morning and I could get little done right. Nadine's blood counts were up but she still felt awful. I knew it was chemo pain rather than medical downsliding, but it still hurt to see her that way.
Sitting on her bed, I allowed myself to cry and told her it hurt to see her feeling this bad. She gave me a little smile and looked relieved to see me express my sadness. I guess my new friend Raylene, who had encouraged me to share not-so-happy emotions with her if I felt them, was right -- it reinforces her knowledge that I care. I felt better too after crying.
______________
Beth Schemp, the wound care specialist, arrived and removed Nadine's dressing to inspect the "hole" left in Nadine's chest after her port was removed. Happily, pronounced it healing nicely. This ws especially meaningful to me because of the previous lack of healing. Beth expertly changed the Aqua-Cel dressing, explaining the process again so I can do the job if needed. Cheryl Gillette also came -- she is the expert nurse who installed Nadine's PICC line (peripherally inserted central catheter), which replaced the removed port. Cheryl showed me the sterile procedure for changing the PICC line dressing, and I got to flush the line with saline. I'm always on the look-out for people to ask for if future procedures are needed -- Beth and Cheryl are definitely on my list.
Oh yes, I ran into the surgeon who I'd been told had insisted that he wouldn't put another port in for Nadine, even though Dr. Bruckner had said she'd approve it. He pleasantly announced the he'd talked with Dr. Bruckner, and that there was time. "We'll talk", he said. "You've made my day", I answered.
Barry arrived and had dinner with us; then we went back up to see Nadine. Erek left early and I stayed on to consult with two of the doctors.
Before I left, I took Nadine's hand and she gave me one of her radiant smiles.
HER SMILE LEFT ME SMILING TOO.
I
Friday, July 3, 2009
FRIENDS, BRIDGES, AND FRENCH FRIES
Friends are a joy and even more than that. They bring together my two universes. One is the all-consuming universe of Nadine's illness, wellness, treatment, the hospital, our roles. The other is the world "outside" which I enter from time to time -- sun-laden, rain-drenched, green-leafed, with healthy children playing, stores carrying both necessities and frivolities, traffic, and rooms without sanitizing wipes at every doorway.
As friends, old and new, drift in from one universe to another, their presence tangibly and lovingly reminds me that the two universes indeed are ONE.
______________________________
BRIDGES
Nadine, clad in a blazing red-and-yellow tie-dyed tank top and baggy shorts, experimented with a scarf to cover her newly sun-sensitized self. A young Muslim mother of twins, her head and neck artfully covered with a beautiful scarf, approached Nadine and offered to teach her. She showed Nadine how to wrap the scarf to cover her head and how to use pins to secure it without tearing the fabric, and also talked about how her friends handle scarves. Merriment and respect was evident among the two as the common bond shone through.
Later, after Nadine got a henna painting on her head, the same woman taught us how to make a henna tattoo last longer. She explained that she is Indian and was "henna-ed" for her own wedding.
We also have had conversations about parenting in and out of the hospital.
____________
Yesterday I met Barbara, another mother, near the nurses' station. Her son, 10 days younger than Nadine, was shot in both legs near his front porch; it appears to have been a random shooting. Barbara introduced me to her son, who was lying alert in bed with both legs bandaged. He wanted to meet Nadine, and Nadine walked over to visit. The young man, a football player, also likes Beethoven, and the two had a nice chat; I enjoyed speaking with Barbara. Both teens, so different in appearance yet with so many commonalities, hopefully will be out of the hospital soon. I mourn the violence surrounding so many of us.
__________________________________
FRENCH FRIES
Nadine, while consistently craving the healthiest of healthy diets (Yay), also has sometimes wanted French fries. One evening they appeared on her plate, as glistening and golden-brown as a TV commercial. I fought with her; she held her ground, insisting she wouldn't eat too many. All right, all right, I stopped fussing at her (but fumed inside). She ate her fill (not a huge amount), and offered me the left-over fries. I grimaced, then took one with the intention of exclaiming how awful they were.
They were delicious! Honesty prevailing, I admitted to her that I liked 'em. So now we both sometimes share a few fries -- fun.
As friends, old and new, drift in from one universe to another, their presence tangibly and lovingly reminds me that the two universes indeed are ONE.
______________________________
BRIDGES
Nadine, clad in a blazing red-and-yellow tie-dyed tank top and baggy shorts, experimented with a scarf to cover her newly sun-sensitized self. A young Muslim mother of twins, her head and neck artfully covered with a beautiful scarf, approached Nadine and offered to teach her. She showed Nadine how to wrap the scarf to cover her head and how to use pins to secure it without tearing the fabric, and also talked about how her friends handle scarves. Merriment and respect was evident among the two as the common bond shone through.
Later, after Nadine got a henna painting on her head, the same woman taught us how to make a henna tattoo last longer. She explained that she is Indian and was "henna-ed" for her own wedding.
We also have had conversations about parenting in and out of the hospital.
____________
Yesterday I met Barbara, another mother, near the nurses' station. Her son, 10 days younger than Nadine, was shot in both legs near his front porch; it appears to have been a random shooting. Barbara introduced me to her son, who was lying alert in bed with both legs bandaged. He wanted to meet Nadine, and Nadine walked over to visit. The young man, a football player, also likes Beethoven, and the two had a nice chat; I enjoyed speaking with Barbara. Both teens, so different in appearance yet with so many commonalities, hopefully will be out of the hospital soon. I mourn the violence surrounding so many of us.
__________________________________
FRENCH FRIES
Nadine, while consistently craving the healthiest of healthy diets (Yay), also has sometimes wanted French fries. One evening they appeared on her plate, as glistening and golden-brown as a TV commercial. I fought with her; she held her ground, insisting she wouldn't eat too many. All right, all right, I stopped fussing at her (but fumed inside). She ate her fill (not a huge amount), and offered me the left-over fries. I grimaced, then took one with the intention of exclaiming how awful they were.
They were delicious! Honesty prevailing, I admitted to her that I liked 'em. So now we both sometimes share a few fries -- fun.
Wednesday, July 1, 2009
Day 32 -- Remission!
On Day 32 of Nadine's chemo, Nadine was pronounced in remission! And the next "phase" of chemotherapy began.
Her preliminary bone marrow biopsy showed no cancer evidence, and her blood counts were normal!! What a celebration. The "minimal residual disease", another important test, isn't expected to come back for about 2 to 3 weeks, but the initials findings are wonderful.
I watched the bone marrow biopsy and the spinal tap and injection of methotrexine, a chemo agent, into her spinal fluid; a PICC (a catheter through her arm to a central vein) was inserted -- this should stay until her blood counts rise after the second round of chemo, after which hopefully the porta-cath will be inserted.
Then she was re-admitted to the hospital floor, the IV pole was re-instated, and she got fluids. The wound care lady inspected the "hole" from the port removal and pronounced it healing well.
She got Vincristine (a chemo agent), and a few hours later, she had the doxorubicin (another chemo med.); later on she had mercaptopurine, which works on DNA. At about 10:30 PM she was started on the 24-hour drip of methetrexate, a powerful chemo agent -- this is expected to be the largest dose of it of her whole chemo experience. After this is done it should be flushed out of her system, and when the levels go down sufficiently, she'll be released from the hospital if all goes well. This could be as soon as Friday although it may drag on further.
Sadly, she went through part of the day feeling pretty miserable, although perhaps better than I expected. It was sad to see her having body pain again. I know she'll probably be feeling sick before she feels well.
Mary Joan Deutchbein came and gave her a wonderful massage.
Erek also was with her, as was I. Erek and I took a long, long walk in the hot sun along the Erie Canal. Even on days like this, I realize that I need to stay in shape. Tonight we visited together, and soon I expect to be in bed.
That's it for now.
Her preliminary bone marrow biopsy showed no cancer evidence, and her blood counts were normal!! What a celebration. The "minimal residual disease", another important test, isn't expected to come back for about 2 to 3 weeks, but the initials findings are wonderful.
I watched the bone marrow biopsy and the spinal tap and injection of methotrexine, a chemo agent, into her spinal fluid; a PICC (a catheter through her arm to a central vein) was inserted -- this should stay until her blood counts rise after the second round of chemo, after which hopefully the porta-cath will be inserted.
Then she was re-admitted to the hospital floor, the IV pole was re-instated, and she got fluids. The wound care lady inspected the "hole" from the port removal and pronounced it healing well.
She got Vincristine (a chemo agent), and a few hours later, she had the doxorubicin (another chemo med.); later on she had mercaptopurine, which works on DNA. At about 10:30 PM she was started on the 24-hour drip of methetrexate, a powerful chemo agent -- this is expected to be the largest dose of it of her whole chemo experience. After this is done it should be flushed out of her system, and when the levels go down sufficiently, she'll be released from the hospital if all goes well. This could be as soon as Friday although it may drag on further.
Sadly, she went through part of the day feeling pretty miserable, although perhaps better than I expected. It was sad to see her having body pain again. I know she'll probably be feeling sick before she feels well.
Mary Joan Deutchbein came and gave her a wonderful massage.
Erek also was with her, as was I. Erek and I took a long, long walk in the hot sun along the Erie Canal. Even on days like this, I realize that I need to stay in shape. Tonight we visited together, and soon I expect to be in bed.
That's it for now.
Subscribe to:
Posts (Atom)