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.
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