Today Nadine and I played music together for hours. Traditional tunes, groove tunes, classical tunes, lyric tunes, improvisations. Her tone was rich and rhythmic. We synchronized and meshed seamlessly. I saw beautiful arcs of light dancing on the high walls of the large sunny room. It was the reflection from Nadine's silver flute!!
Earlier, I practiced by myself, mostly scales and classical pieces, and marveled that my technique seemed intact. Nadine marveled that hers was too.
____________________________________
Sunday was a lazy day. Nadine had a burning desire to cook, choosing to sautee greenbeans in the way Joanna Bassett did, with perfect results.
In the afternoon Kate gave Nadine a lovely henna "painting" on the side of her head, a perfect addition. The three of us on the front porch with its white rocking chairs. Nadine sported her orange and yellow tie-dyed tank top. I provided a platic-bag bib to keep the dye off. The henna had to be kept on overnight wrapped in plastic. After Kate finished, she offered to "do" me and I got a design on my arm, my first henna tattoo. I doubt it will be my last.
Nadine was a little more "aching" than the day before -- some pain occurred on the backs of her legs and on the lower back. The "regular" nurse Jessie, told me this is normal for vincristine (one of the chemo preparations).
Barry drove Kate to the airport and went home. Erek and I took a long walk in the dark through the neighborhood, a treat -- the walk and the company. I treasure my walks with him. I also treasure a warm night.
As usual Nadine stayed up well after I went to bed.
________
Today (Monday), Nadine felt more energetic. She prepared a breakfast burrito with tofu and green beans,
Nadine's first lab visit for blood drawing occurred -- I insisted we wait in a private room because of the crowd in the main room. The phlebotomist did such an expert job Nadine's small veins that it didn't hurt at all! I said I'd ask for her the next time. After we left, we ran into the wig lady, and Nadine had more fun in the wig shop, modeling a favorite jet-black wig.
Nadine's blood counts were normal!!! They were perfect!!! Her hematocrit, white blood cells, phosphorus, glucose, platelets, the works!!!! What news!!!
In the afternoon, Nadine visited with her close friend Rafi -- they took a long leisurely walk down the bike trail by the Erie Canal. Nadine had her pink fleece hat and Rafi had a blue demin one. Later on, they switched hats. Erek's mom Diana and I got a fine visit and excellent conversation -- we too went out for a walk down the bike trail by the water, timingit so we wouldn't intrude on Nadine and Rafi.
There was an excellent dinner prepared at the house, for which Nadine withdrew her "order" to go out for Mexican food. There was pulled pork (actually delicious), meat loaf, chicken casserole, potato salad, boiled potatoes, salad, the works, plus apple pie, prepared by a large squad of cheerful cooks. Nadine, Erek and I ate on the deck so she could remove her mask, with the sun low enough so she could go maskless.
AFter dinner we went to the downstairs lounge and played "Settlers" -- Erek won this time. Afterwards, Erek and Nadine did stuff together, and I went upstairs and called Hope, a fiddler I enjoy playing music with. I feel ready to think more about music again, even if I'm not ready to travel for it yet.
I went to bed after that and Erek and Nadine did so too.
Monday, June 29, 2009
Day 32, The Big Day Looming
Day 32 is Tuesday June 30th. The "big day", the end of the glorious hospital-free vacation interlude. Also it's the end of the "first phase" of chemo. Nadine gets a bone marrow biopsy to see if she looks in remission. The biopsy will determine the "minimal residual disease" (MRD) level, which is the comparison of number or concentration of leukemia cells remaining in her bone marrow compared to the the number or concentration of leukemia cells found in the marrow when she was first admitted to the hospital. It's a seriously important figure.
If Nadine's immediate levels suggest remission, she'll be immediately admitted to the hospital and given another enormously powerful round of chemo -- she'll be "in" for perhaps 4 to 6 days, but it will be a very intense round of chemo in her vein and in spinal cord. Doxyrubicin and dexrazoxane and methatrexate, the works, plus her usual vincristine. Nasty nasty nasty in the service of healthy.
She looks and acts pretty normal and has lots of energy, and her blood counts are up around normal, after what is called "zero-ing out" that happened perhaps 2 weeks ago. She had serious malaise before. The nest round of chemo is expected to drop her "counts" again about a week from tomorrow. There will be many chemo cycles over her 2-year treatment period -- chemo administered, blood counts dropped, time allowed for the blood counts to rise, then chemo again.
i
I hate to think of her hurting again. But f left untreated at this stage, nobody is cured!
I cling to that knowledge and dig in.
If Nadine's immediate levels suggest remission, she'll be immediately admitted to the hospital and given another enormously powerful round of chemo -- she'll be "in" for perhaps 4 to 6 days, but it will be a very intense round of chemo in her vein and in spinal cord. Doxyrubicin and dexrazoxane and methatrexate, the works, plus her usual vincristine. Nasty nasty nasty in the service of healthy.
She looks and acts pretty normal and has lots of energy, and her blood counts are up around normal, after what is called "zero-ing out" that happened perhaps 2 weeks ago. She had serious malaise before. The nest round of chemo is expected to drop her "counts" again about a week from tomorrow. There will be many chemo cycles over her 2-year treatment period -- chemo administered, blood counts dropped, time allowed for the blood counts to rise, then chemo again.
i
I hate to think of her hurting again. But f left untreated at this stage, nobody is cured!
I cling to that knowledge and dig in.
"I like being out of the hospital" (Nadine)
At 3PM Friday June 26th, Erek and I loaded Nadine's stuff into the huge, picturesque wooden wagon brought by Nurse Denise, and Nadine left the hospital for her 3-day "break", amidst goodbyes to the friends she had made among nurses, staff, and families. And off we went into the sunny day.
First we went to Ronald MacDonald House, where I gave her the "tour" of the spacious lovely lounges and halls, the well-stocked kitchen, the beautiful wooden outdoor deck, the woods, our sun-drenched room. The doctors had approved the "run of the place" although she had to mask when other people were there unless outside.
She sat on the deck, and after sitting with her I experienced, finally, the urge to play the piano, and play I did. Chopin, Beethoven, improvisations, tumbled out. A month of almost no music, then a flood as soon as she left the hospital. I had played once, and it had felt awkward and halting -- I had barely remembered the Chopin nocturne I'd known like the back of my hand. Now the music had returned along with Nadine.
Nadine was hungry, and wanted to try Paola's, the nearby Mexican restaurant Erek had gone to. We bundled into the car, and as we drove along the tree-lined street Nadine announced, "I LIKE BEING OUT OF THE HOSPITAL". Nadine got to enjoy sitting at a booth with us, and ordered a burrito and horchata-- she still had to "hold" the lettuce, but was a good sport and thoroughly enjoyed the meal. It all felt like a feast.
We returned to the house to find my friend Sue Klassen there, offering one of her long, warm hugs. And there was Barry, Nadine's dad, a smile in his eyes. Nadine and Barry happily hauled off to the outdoor deck.
At about 7PM we all lounged in our room. I was lying on the bed when and someone suggested a game of Settlers of Catan, my favorite game. Delighted, I closed my eyes. When I opened them, everyone was gone. About 2 hours had gone by! My exhaustion had finally caught up with me. Laughing ruefully, I left the room to find Erek, Barry and Nadine busily doing a 1000-piece puzzle on the table in the second floor lounge. All was well.
At 10, Barry Nadine and Erek loaded themselves into Barry's gorgeous little black 1982 Cabriolet convertible (top down) and away they went to pick up Kate, Erek's sweetheart at the airport.
As for me, I went to bed. I briefly got up to welcome Kate, and turned in for the night. I wondered if the rest of them would wake me when they came in, but the next thing I knew it was morning.
____________________
On Saturday morning I opened my eyes and looked at beautiful Nadine, lying comfortably on the bed across from me. Erek and Kate were next to me on the air mattress, and Barry was on the bed on the other side. The sun poured through the window. Contentment.
Eventually everyone got up, for a leisurely morning, breakfast, no place to go, no hospital rounds to catch up to. I went back to bed again, still exhausted. I got up to find Nadine on the back deck eating a bagel with cream cheese -- what a luxury to have an ordinary week-end day.
The week-end visiting nurse called and came to check Nadine's dressing. She wasn't our favorite, but she isn't our "regular" nurse and we don't have to see her again. Our "regular" nurse was recommended by a new friend (introduced by Diana), whose teen-aged son was diagnosed with leukemia a year ago, and I trust her judgment. This will be a 2-year relationship.
After relaxing, Nadine wanted to go to Goodwill -- she had lost weight and anyway it was summer and time for her to feel comfy in feel and looks. Barry helped me clear out my embarrassingly messy, overstuffed car, and away the five of us went. Nadine's bearing in the store was that of a happy teen on a shopping spree as she professionally sifted through racks of random clothing, expertly picking out tank tops, cargo pants, and shorts -- after try-ons, she exclaimed she'd found the best cargo pants ever, fell in love with a red tank shirt, and finished off proudly with a glorious orange and white tie-dyed tank top. Nadine proudly wore her head "au natural", looking regal and model-like. Even her mask was no deterrent to her beauty and grace.
As for me, I indulged in a bright sunny-colored cloth purse (I usually use black ones) and found a nice twirly denim skirt for contra dancing. My self-indulgence cost me about 9 dollars, a fair price for wearing my own celebration.
Afterwards, it was back to the Mexican restaurant, this time all five of us, for a rowdy and fun dinner, at which Nadine happiily devoured another burrito plate.
At the house, we finally got to play a family favorite game, Settlers of Catan (my all-time favorite), a European board game where the "board" rearranges itself. There were the classic machinations and intrigues -- Nadine won handily.
We took a long walk after dark, when Nadine no longer had to "cover up" (her medication made her extra sun-sensitive). Nadine walked through the woods, the soft earth under her feet (I loved the feel of it too), and down to a paved path along the Erie Canal, where we walked and walked. Nadine had a brisk pace, and at one point she held my hand. For most of the walk, thought, she stayed with Erek and Kate, who were hand in hand -- Barry and I held hands behind them. I had brought the cell phone (in case there was an emergency) but turned it off so no one would be disturbed. Energized, we kept going past the house -- I could faintly hear the "kids'" tinkly conversation.
And then -- the house, and bed for me. Barry and Nadine stayed up late. I fretted a bit about Nadine, then relaxed -- after all, she's always been a "night owl".
___________________
_________________________
First we went to Ronald MacDonald House, where I gave her the "tour" of the spacious lovely lounges and halls, the well-stocked kitchen, the beautiful wooden outdoor deck, the woods, our sun-drenched room. The doctors had approved the "run of the place" although she had to mask when other people were there unless outside.
She sat on the deck, and after sitting with her I experienced, finally, the urge to play the piano, and play I did. Chopin, Beethoven, improvisations, tumbled out. A month of almost no music, then a flood as soon as she left the hospital. I had played once, and it had felt awkward and halting -- I had barely remembered the Chopin nocturne I'd known like the back of my hand. Now the music had returned along with Nadine.
Nadine was hungry, and wanted to try Paola's, the nearby Mexican restaurant Erek had gone to. We bundled into the car, and as we drove along the tree-lined street Nadine announced, "I LIKE BEING OUT OF THE HOSPITAL". Nadine got to enjoy sitting at a booth with us, and ordered a burrito and horchata-- she still had to "hold" the lettuce, but was a good sport and thoroughly enjoyed the meal. It all felt like a feast.
We returned to the house to find my friend Sue Klassen there, offering one of her long, warm hugs. And there was Barry, Nadine's dad, a smile in his eyes. Nadine and Barry happily hauled off to the outdoor deck.
At about 7PM we all lounged in our room. I was lying on the bed when and someone suggested a game of Settlers of Catan, my favorite game. Delighted, I closed my eyes. When I opened them, everyone was gone. About 2 hours had gone by! My exhaustion had finally caught up with me. Laughing ruefully, I left the room to find Erek, Barry and Nadine busily doing a 1000-piece puzzle on the table in the second floor lounge. All was well.
At 10, Barry Nadine and Erek loaded themselves into Barry's gorgeous little black 1982 Cabriolet convertible (top down) and away they went to pick up Kate, Erek's sweetheart at the airport.
As for me, I went to bed. I briefly got up to welcome Kate, and turned in for the night. I wondered if the rest of them would wake me when they came in, but the next thing I knew it was morning.
____________________
On Saturday morning I opened my eyes and looked at beautiful Nadine, lying comfortably on the bed across from me. Erek and Kate were next to me on the air mattress, and Barry was on the bed on the other side. The sun poured through the window. Contentment.
Eventually everyone got up, for a leisurely morning, breakfast, no place to go, no hospital rounds to catch up to. I went back to bed again, still exhausted. I got up to find Nadine on the back deck eating a bagel with cream cheese -- what a luxury to have an ordinary week-end day.
The week-end visiting nurse called and came to check Nadine's dressing. She wasn't our favorite, but she isn't our "regular" nurse and we don't have to see her again. Our "regular" nurse was recommended by a new friend (introduced by Diana), whose teen-aged son was diagnosed with leukemia a year ago, and I trust her judgment. This will be a 2-year relationship.
After relaxing, Nadine wanted to go to Goodwill -- she had lost weight and anyway it was summer and time for her to feel comfy in feel and looks. Barry helped me clear out my embarrassingly messy, overstuffed car, and away the five of us went. Nadine's bearing in the store was that of a happy teen on a shopping spree as she professionally sifted through racks of random clothing, expertly picking out tank tops, cargo pants, and shorts -- after try-ons, she exclaimed she'd found the best cargo pants ever, fell in love with a red tank shirt, and finished off proudly with a glorious orange and white tie-dyed tank top. Nadine proudly wore her head "au natural", looking regal and model-like. Even her mask was no deterrent to her beauty and grace.
As for me, I indulged in a bright sunny-colored cloth purse (I usually use black ones) and found a nice twirly denim skirt for contra dancing. My self-indulgence cost me about 9 dollars, a fair price for wearing my own celebration.
Afterwards, it was back to the Mexican restaurant, this time all five of us, for a rowdy and fun dinner, at which Nadine happiily devoured another burrito plate.
At the house, we finally got to play a family favorite game, Settlers of Catan (my all-time favorite), a European board game where the "board" rearranges itself. There were the classic machinations and intrigues -- Nadine won handily.
We took a long walk after dark, when Nadine no longer had to "cover up" (her medication made her extra sun-sensitive). Nadine walked through the woods, the soft earth under her feet (I loved the feel of it too), and down to a paved path along the Erie Canal, where we walked and walked. Nadine had a brisk pace, and at one point she held my hand. For most of the walk, thought, she stayed with Erek and Kate, who were hand in hand -- Barry and I held hands behind them. I had brought the cell phone (in case there was an emergency) but turned it off so no one would be disturbed. Energized, we kept going past the house -- I could faintly hear the "kids'" tinkly conversation.
And then -- the house, and bed for me. Barry and Nadine stayed up late. I fretted a bit about Nadine, then relaxed -- after all, she's always been a "night owl".
___________________
_________________________
Sunday, June 28, 2009
"Almost Out of the Hospital"
Nadine continued to exercise and do wonderful things. She picked up her chain maille. She took one of her other friends on the "tour" of the cave/tunnel underneath the hospital, and told me about an amazing painting on the wall down there -- it was eerie and fascinating with all the pipes etc. Visitors abounded -- Sue Klassen, Lois Zendarski from Franklinville with her long-haired horse-riding daughters April and Holly, Jane Knoeck again (always welcome any time), Dr. Korona, who might have modeled Nadine's pink hat.
I went to the Thursday get-together for parents of children with cancer. I had resisted it, feeling I had plenty of support -- now that Nadine was almost ready to get out, I felt the need to know others who were also dealing with children or teens with cancer. I wasn't disappointed. There were tears, laughter, many stories, solidarity; I met one family who I hope to see afterwards. And I was relieved to learn I wasn't the only parent who had needed to "stand up to" a medical situation that they didn't agree with.
The wound specialist came by to change Nadine's dressing (from the removed port) and teach me how to do it. She seemed like a professor, thorough and articulate. I watched and videoed -- although it was pretty "involved", I know I'll be able to do fine if I need to (the visiting nurse will probably be there for most of them).
On Thursday night, Erek invited me to watch a movie with him and Nadine on the computer. I settled next to him, and the three of us watched together -- it was a sweet movie, and a sweet time together. I felt I had been invited into their world, and accepted with much pleasure. Afterwards, Nadine said she was going to pack up her "wall", the beautiful display of cards, pictures, notes, artwork etc. that had graced her wall. I had wanted to take more photos or video of it, but even I (sometimes) know when to keep my mouth shut.
We took pictures that day and the next of many of the nurses and other people we'd met. Eric the social worker came by and Nadine and I each hugged him. I didn't have time to talk to frieinds -- we were packing, and I visited with the visiting nurse coordinator, the nurse for instructions on discharge activities, medications, when to the call the hospital, and on and on.
Although Nadine and I were both nervous about how we'd handle the discharge, the healing incision, how to figure out if or when we needed to call about a medical problem, the time was coming to leave.
As it got closer, nervousness gave way to excitement. It was almost time. It was only for three days, but it would be another adventure.
I went to the Thursday get-together for parents of children with cancer. I had resisted it, feeling I had plenty of support -- now that Nadine was almost ready to get out, I felt the need to know others who were also dealing with children or teens with cancer. I wasn't disappointed. There were tears, laughter, many stories, solidarity; I met one family who I hope to see afterwards. And I was relieved to learn I wasn't the only parent who had needed to "stand up to" a medical situation that they didn't agree with.
The wound specialist came by to change Nadine's dressing (from the removed port) and teach me how to do it. She seemed like a professor, thorough and articulate. I watched and videoed -- although it was pretty "involved", I know I'll be able to do fine if I need to (the visiting nurse will probably be there for most of them).
On Thursday night, Erek invited me to watch a movie with him and Nadine on the computer. I settled next to him, and the three of us watched together -- it was a sweet movie, and a sweet time together. I felt I had been invited into their world, and accepted with much pleasure. Afterwards, Nadine said she was going to pack up her "wall", the beautiful display of cards, pictures, notes, artwork etc. that had graced her wall. I had wanted to take more photos or video of it, but even I (sometimes) know when to keep my mouth shut.
We took pictures that day and the next of many of the nurses and other people we'd met. Eric the social worker came by and Nadine and I each hugged him. I didn't have time to talk to frieinds -- we were packing, and I visited with the visiting nurse coordinator, the nurse for instructions on discharge activities, medications, when to the call the hospital, and on and on.
Although Nadine and I were both nervous about how we'd handle the discharge, the healing incision, how to figure out if or when we needed to call about a medical problem, the time was coming to leave.
As it got closer, nervousness gave way to excitement. It was almost time. It was only for three days, but it would be another adventure.
Port Trials and Other Stuff
It's not just "port wars" and it's not even a "war". It's that even with the "best" care, I have to stay vigilant. I'm the one with her the most; she's my only responsibility; she's my daughter. I have to speak up, even if someone could get annoyed. So far, every time I've "spoken up" it's been right. There was a near-miss avoiding insulin she shouldn't have been given, and now it's the port.
The original porta-cath was removed Wednesday, as the incision hadn't healed. I had squawked about that incision for days before someone took it seriously. The surgeon announced she would have to have a Hickman catheter to replace it. Nadine and I strongly felt she should have another porta-cath (less prone to infection, and less of a problem to use), instead of the "Hickman" (near surface, two lines sticking out, more frequent trouble with infection), unless there was a strong medical reason for the Hickman. Both the head of the oncology dept. and Nadine's doctor, Dr. Bruckner, told me the porta-cath would be fine; Dr. Bruckner also told me the surgeon wouldn't budge. . She said the interventional radiology department would probably do it I don't know why she didn't just talk to another surgeon. I found out that interventional radiology probably uses fluoroscopy, , which didn't thrill me -- Today I called a vascular surgeon, the father of my son's partner -- he thought the fluoroscopy used was minimal, and agreed that a porta-cath would be just fine. I met a patient who had the "Hickman" type of catheter, and she told me more problems with it - more incentive to get this done right.
Eric, the social worker, complimented me on managing to be civil even though I was upset. I was relieved -- I felt I sounded like a "bear". The head of the patient advocacy department said she'd trust me to advocate for her own child, and encouraged me to contact her if I wanted to do patient advocacy. As for me, I feel sad for people who haven't learned to speak up.
One more consequence of all the hubbub on Thursday -- I didn't eat breakfast until about 5PM. Such is the life of a hospital mommy.
The original porta-cath was removed Wednesday, as the incision hadn't healed. I had squawked about that incision for days before someone took it seriously. The surgeon announced she would have to have a Hickman catheter to replace it. Nadine and I strongly felt she should have another porta-cath (less prone to infection, and less of a problem to use), instead of the "Hickman" (near surface, two lines sticking out, more frequent trouble with infection), unless there was a strong medical reason for the Hickman. Both the head of the oncology dept. and Nadine's doctor, Dr. Bruckner, told me the porta-cath would be fine; Dr. Bruckner also told me the surgeon wouldn't budge. . She said the interventional radiology department would probably do it I don't know why she didn't just talk to another surgeon. I found out that interventional radiology probably uses fluoroscopy, , which didn't thrill me -- Today I called a vascular surgeon, the father of my son's partner -- he thought the fluoroscopy used was minimal, and agreed that a porta-cath would be just fine. I met a patient who had the "Hickman" type of catheter, and she told me more problems with it - more incentive to get this done right.
Eric, the social worker, complimented me on managing to be civil even though I was upset. I was relieved -- I felt I sounded like a "bear". The head of the patient advocacy department said she'd trust me to advocate for her own child, and encouraged me to contact her if I wanted to do patient advocacy. As for me, I feel sad for people who haven't learned to speak up.
One more consequence of all the hubbub on Thursday -- I didn't eat breakfast until about 5PM. Such is the life of a hospital mommy.
Wednesday, June 24, 2009
"We have patients who make the best of it, but not like you do. You're awesome." (Nurse Melody to Nadine)
Melody, Nadine's nurse, walked into Nadine's room to hear Tom and Hope playing super fiddle-and-guitar music while Nadine gazed happily and wiggled her sweet feet in time to the music. Later today, Nadine showed Melody picures of herself sporting outrageous wigs in the wig store. Annie, the super-lively nurse with long blonde hair, came to say hi, sampled some of our berry pie. and said, "I can't just walk by your room and pretend you don't need anything."
Nadine's wall still brims with artwork and cards. The disco ball on the windowsill spills globs of light over the walls and ceiling. Nadine resumed making chain maille jewelry, and models a zillion hair ornaments. Erek's girlfriend Kate is bringing henna this week-end and if the doctor approves, Nadine will have a henna "tattooo" on her bald head. Way cool.
Nadine climbed 10 flights of stairs yesterday. 10 flights! She climbed around the little hill outside the hospital, and someone directed her to a "secret" tunnel under the hospital that went all the way to the nursing school. "It's like playing dress-up", she said after donning her hot-pink fleece hat and a shawl to walk in the sun. That same day, she tie-dyed cloth scarves with Rafi and Sylvia. They hung in bright profusion in the bathroom along with the medical stuff.
Tonight, music is ringing through Nadine's computer speakers. Erek and Nadine are looking at silly photos, and giggles ring through the room. "So cute", she said.
We're having another silly fun night. Life definitely goes on.
Melody, Nadine's nurse, walked into Nadine's room to hear Tom and Hope playing super fiddle-and-guitar music while Nadine gazed happily and wiggled her sweet feet in time to the music. Later today, Nadine showed Melody picures of herself sporting outrageous wigs in the wig store. Annie, the super-lively nurse with long blonde hair, came to say hi, sampled some of our berry pie. and said, "I can't just walk by your room and pretend you don't need anything."
Nadine's wall still brims with artwork and cards. The disco ball on the windowsill spills globs of light over the walls and ceiling. Nadine resumed making chain maille jewelry, and models a zillion hair ornaments. Erek's girlfriend Kate is bringing henna this week-end and if the doctor approves, Nadine will have a henna "tattooo" on her bald head. Way cool.
Nadine climbed 10 flights of stairs yesterday. 10 flights! She climbed around the little hill outside the hospital, and someone directed her to a "secret" tunnel under the hospital that went all the way to the nursing school. "It's like playing dress-up", she said after donning her hot-pink fleece hat and a shawl to walk in the sun. That same day, she tie-dyed cloth scarves with Rafi and Sylvia. They hung in bright profusion in the bathroom along with the medical stuff.
Tonight, music is ringing through Nadine's computer speakers. Erek and Nadine are looking at silly photos, and giggles ring through the room. "So cute", she said.
We're having another silly fun night. Life definitely goes on.
BUMPS, LESSONS, AND CHANGES
TUES JUNE 23rd --- A friend recently wrote to me that it is wise to sometimes share my concerns and even my scaredness with Nadine, as well as my "up-ness" -- that the honesty is another affirmation of my love for her. And Nadine's friend Sylvia, overhearing me reassuring Nadine that it was okay to share "negative" feelings if they came up, gave me a big hug and told me that I should listen to that advice myself -- that it's okay to share them with my friends. I've come to see the wisdom, much as it goes against my "grain" ( although I don't intend to be a constant complainer).
Thinking over the week, it's "sunk in" how dangerous Nadine's sepsis (bacteria in the blood), was last week and how amazing it was that she'd snapped out of it that quickly, how amazing the care she got. The word "life-threatening" or "critical" was used for that infection -- shaking, fever, low blood pressure, fast heart rate, blotchy face. I didn't always remember that. Nadine told me today she hadn't realized how dangerous that infection was either. Although Nadine has indeed done beautifully for her situation, there are also times to reflect on the seriousness of this fight she's in, and to honor it.
I've experienced occasional frustrations -- although the medical care is usually excellent, occasionally I see something I need to "get through" to the staff, and encounter resistance. A few days ago, I noticed oozing in the incision for her porta-cath, and the staff thought it was normal.
Today, one of the nurse-directors noticed and said it looked like it could be infected. The surgeon was finally called -- he announced that that the port hadn't healed and needs to be removed tomorrow (whether infected or not) due to risk of infection, as her blood "counts" could drop during her next "round" of chemo next week. He said the port will be replaced next week with the "other" kind of port, which has two tubes hanging out -- this port is easier to "access" for medications, but needs much more care, and is bulky. . Nadine really wanted the type she already had.
I agree the port needs to go. However, as the head of the oncology department is on "floor" duty tomorrow, I want to as him if the "other" port is indeed the only medically prudent alternative for next week. Not enough communication so far. Arrrrggggggh.
I shared my upset with Nadine this time, and the two of us sat together in the bed as we thought together.
After that, we looked at silly hospital (and other) pictures together on the computer, and some normalcy returned.
She's gone to bed early tonight, and I'm relieved. I'm glad Erek's coming back tonight. I feel exhausted, like I've been run over by a truck.
I still had my cookie before bedtime.
---------------------------------
TUESDAY JUNE 23
The port was removed this morning. Although I expected the surgeon to "eject" me, he permitted me to stay.
I had a productive meeting with Dr. Mullen, the head of the pediatric oncology dept. He said that there was an excellent chance they could use the port Nadine wanted, but she'd have to put up with having regular (arm) IVs for about a week or two. Nadine said she'd put up with "pokey pokey" (her words) in exchange for getting the port she preferred. I was pleased that there was some wiggle-room. Provide, of course, there aren't other medical concerns.
READY FOR CONTACT SPORTS??
After the surgery, Mary Joan massaged Nadine. I asked Dr. Mullen if deeper massage was okay (it's not okay with low platelets due to risk of bruising). He checked his chart and said her platelets were so high that she could qualify for doing contact sports! So, she got a "real" massage. She's come a long way.
Later on in the day, there was a surprise visit from Hope and Tom, two wonderful musicians from well east of here. They brought guitar and fiddle and shared warm, wonderful conversation and some of the best music I've ever heard. Nadine watched from her bed, her face animated and her toes moving wiht the music. I thoroughly enjoyed it as well.
Nadine has been ravenously hungry lately, although she's lost weight.
It looks like if all goes well she'll be "discharged" Friday, and Saturday, Sunday and Monday off before returning to the hospital for her second round of chemo.
TUES JUNE 23rd --- A friend recently wrote to me that it is wise to sometimes share my concerns and even my scaredness with Nadine, as well as my "up-ness" -- that the honesty is another affirmation of my love for her. And Nadine's friend Sylvia, overhearing me reassuring Nadine that it was okay to share "negative" feelings if they came up, gave me a big hug and told me that I should listen to that advice myself -- that it's okay to share them with my friends. I've come to see the wisdom, much as it goes against my "grain" ( although I don't intend to be a constant complainer).
Thinking over the week, it's "sunk in" how dangerous Nadine's sepsis (bacteria in the blood), was last week and how amazing it was that she'd snapped out of it that quickly, how amazing the care she got. The word "life-threatening" or "critical" was used for that infection -- shaking, fever, low blood pressure, fast heart rate, blotchy face. I didn't always remember that. Nadine told me today she hadn't realized how dangerous that infection was either. Although Nadine has indeed done beautifully for her situation, there are also times to reflect on the seriousness of this fight she's in, and to honor it.
I've experienced occasional frustrations -- although the medical care is usually excellent, occasionally I see something I need to "get through" to the staff, and encounter resistance. A few days ago, I noticed oozing in the incision for her porta-cath, and the staff thought it was normal.
Today, one of the nurse-directors noticed and said it looked like it could be infected. The surgeon was finally called -- he announced that that the port hadn't healed and needs to be removed tomorrow (whether infected or not) due to risk of infection, as her blood "counts" could drop during her next "round" of chemo next week. He said the port will be replaced next week with the "other" kind of port, which has two tubes hanging out -- this port is easier to "access" for medications, but needs much more care, and is bulky. . Nadine really wanted the type she already had.
I agree the port needs to go. However, as the head of the oncology department is on "floor" duty tomorrow, I want to as him if the "other" port is indeed the only medically prudent alternative for next week. Not enough communication so far. Arrrrggggggh.
I shared my upset with Nadine this time, and the two of us sat together in the bed as we thought together.
After that, we looked at silly hospital (and other) pictures together on the computer, and some normalcy returned.
She's gone to bed early tonight, and I'm relieved. I'm glad Erek's coming back tonight. I feel exhausted, like I've been run over by a truck.
I still had my cookie before bedtime.
---------------------------------
TUESDAY JUNE 23
The port was removed this morning. Although I expected the surgeon to "eject" me, he permitted me to stay.
I had a productive meeting with Dr. Mullen, the head of the pediatric oncology dept. He said that there was an excellent chance they could use the port Nadine wanted, but she'd have to put up with having regular (arm) IVs for about a week or two. Nadine said she'd put up with "pokey pokey" (her words) in exchange for getting the port she preferred. I was pleased that there was some wiggle-room. Provide, of course, there aren't other medical concerns.
READY FOR CONTACT SPORTS??
After the surgery, Mary Joan massaged Nadine. I asked Dr. Mullen if deeper massage was okay (it's not okay with low platelets due to risk of bruising). He checked his chart and said her platelets were so high that she could qualify for doing contact sports! So, she got a "real" massage. She's come a long way.
Later on in the day, there was a surprise visit from Hope and Tom, two wonderful musicians from well east of here. They brought guitar and fiddle and shared warm, wonderful conversation and some of the best music I've ever heard. Nadine watched from her bed, her face animated and her toes moving wiht the music. I thoroughly enjoyed it as well.
Nadine has been ravenously hungry lately, although she's lost weight.
It looks like if all goes well she'll be "discharged" Friday, and Saturday, Sunday and Monday off before returning to the hospital for her second round of chemo.
Tuesday, June 23, 2009
Another Update -- News and Musings
Summer is my favorite time, and I have much warmth to celebrate. My heart is full of gratefulness that Nadine has perked up, and it was a thoroughly wonderful week-end-to-Monday.
On Saturday Nadine shed her hospital gown and got into "real" clothing -- a black tank and pineapple pants. She sits up straight and proud looking. Lauren Sample came by with some beautiful sample (oops, another unintended pun) silk scarves, and Nadine looked ravishing in a blue marbled silk scarf. There will be a silk-dye session later on for her.
Erek continues to wear his "Mohawk" hairdo. He looks incredibly handsome in it -- I admit this surprised me.. On Saturday Nadine took a walk with Barry, and later on she trounced him at foosball. That night Nadine and Erek stayed up laughing and watching hilarious YouTube videos.
That same day, I took a long, long walk in the rain with Erek almost to Twelve Corners. Frequent long walks have been a mainstay for me -- accessing the beauty of the outdoors and the world around us, visiting with whoever I'm walking with, and getting needed exercise, all rolled into one.
GREEN BEANS, COOKIES and UNDERWEAR
Nadine's cravings have been amazing -- green beans, vegetable stews, noodle soup, yogurt. On Sunday morning she was prowling the hospital floor looking for veggies from the fridge.
As for me, I'm eating fine, but I've taken to a cookie in the morning, and a cookie before I go to bed. It feels good. Speaking of feeling good, I often pat the hand or arm of the lifesized Ronald MacDonald figure that lounges on the bench right outside the front door of Ronald MacDonald House. That's where I get my cookies -- there's a cookie jar right at the entrance to the kitchen. And I get a lot else too.
It seems the top non-food requests from Nadine (and me) from helpers has been -- Underwear and Real Toilet Paper! Oh the things people miss. I heard this isn't uncommon. I was SO happy the morning after Lauren brought me two whole packages of underpants -- 14 pairs! And Nadine has had a fine time with hers too.
___________________
"I HAVEN'T SEEN A HOUSE IN A LONG TIME" (Nadine)
Sunday was another glorious day. I got some time alone with Barry while Nadine slept. Then we walked in and she was awake and perky. This time, unlike on Friday, she wasn't a bit tired after her shower.
Nadine, Barry, Erek and I took a long walk. Her gait was steady and confident, her head was unbowed. She walked briskly with confidence, and I could see the girl who glides gracefully through the contra dance lines, striding down the hallway.
"I haven't seen a house in a long time", exclaimed Nadine. We'd reached a window; she gazed out at trees and, yes, a real house. Then we walked back around the corridor and found some exercise stairs, low enough so she could climb up and down even with Winnifred attached (Winnifred is her IV pole, on which Gladys (a pink flamingo is perched along with whatever medicine she's getting at the time). We returned to her room in triumph.
Dr. Bruckner visited, and the mood was jovial. I asked about the summer, and found out she had options! If blood counts were okay, she might get to the National Flute Association flute choir in August, maybe a few days at Ashokan Northern Week Camp -- even some contra dances! No swimming, no camping, no "active" farms or zoos.
I'm nervous about caring for her after she gets out, even though I've been assured I'd get the "hang" of it and that there were cycles of blood counts.
IT'S JUST US GIRLS NOW.
Sunday night Erek left for two days in DC with work and girlfriend, and Barry left for work. Nadine and I were alone together, the first time we'd have an evening like this since she was admitted to the hospital. We had a sweet, mellow, special evening. We took a walk together, out of the hospital into a beautiful day. Nadine marveled at the feel of the wind on her fuzzy bald head -- a totally new sensation for her, and she loved it. We went all the way to the entrance to the parking garage, then inside, past the lobby and up to her room.
She took out her flute and played it for the first time in weeks. At first there was a quaver in the tone, which alarmed her, but as she kept at it the quaver evened out into her characteristically gorgeous tone. She burst into Mozart's Concerto in G, and it was glorious. I noticed a slight difference in her style, a new smoothness and even a new assuredness, the notes flowing fluidly and expressively together in an enhancement to her already beautiful flutework. I beam at the thought of it.
Right before bedtime, she asked for some more minestrone soup. Soup and love, it couldn't have been better.
MONDAY
Monday, Nadine asked for her chain maille supplies and selected dangly earrings to enhance hwer already lovely silhouette. Sylvia arrived with my friend Sue -- she and I took a brief walk together, arm in arm.
FRIENDS FOR ME TOO
About a week earlier, my wonderful friends Sue and Betty had dragged me out for a long walk in the sun, arm in arm and hand in hand. We went all the way to Ronald MacDonald House, where we had lunch on the sunny deck, exchanging stories and, even more important, each other's company. Diana and I have also walked together.
Other wonderful friends have come, not only talking about Nadine but also reminding me that there is a "me" too.
REST OF THE DAY
Sylvia, Nadine, and I visited the wig store downstairs. The wig lady was large with close-cropped hair and an outrageous sense of humor. Nadine chose wigs that looked outrageous on her, selecting about 5 from the "free" box (including some with gray curls, and some with reddish ones).
An exuberant squad of 6 young,fiddlers mostly from the Roch Phil Youth Orchestra plus Alice Kanack poured in about 6:30, piled into Nadine's room and played some lively, wonderful traditional music. Nadine, still in bed, joined them on flute. The sounds were amazing, with driving tunes like Tamlin, jigs, and two beautiful waltzes, South Wind and Margaret's Waltz. I ahappily sat on the windowsill with camera and video, taking in the sounds and happy faces. Another friend appeared with a homemade pie. It was merriment all night.
I went back to the house, with its cookies, and went to bed.
Summer is my favorite time, and I have much warmth to celebrate. My heart is full of gratefulness that Nadine has perked up, and it was a thoroughly wonderful week-end-to-Monday.
On Saturday Nadine shed her hospital gown and got into "real" clothing -- a black tank and pineapple pants. She sits up straight and proud looking. Lauren Sample came by with some beautiful sample (oops, another unintended pun) silk scarves, and Nadine looked ravishing in a blue marbled silk scarf. There will be a silk-dye session later on for her.
Erek continues to wear his "Mohawk" hairdo. He looks incredibly handsome in it -- I admit this surprised me.. On Saturday Nadine took a walk with Barry, and later on she trounced him at foosball. That night Nadine and Erek stayed up laughing and watching hilarious YouTube videos.
That same day, I took a long, long walk in the rain with Erek almost to Twelve Corners. Frequent long walks have been a mainstay for me -- accessing the beauty of the outdoors and the world around us, visiting with whoever I'm walking with, and getting needed exercise, all rolled into one.
GREEN BEANS, COOKIES and UNDERWEAR
Nadine's cravings have been amazing -- green beans, vegetable stews, noodle soup, yogurt. On Sunday morning she was prowling the hospital floor looking for veggies from the fridge.
As for me, I'm eating fine, but I've taken to a cookie in the morning, and a cookie before I go to bed. It feels good. Speaking of feeling good, I often pat the hand or arm of the lifesized Ronald MacDonald figure that lounges on the bench right outside the front door of Ronald MacDonald House. That's where I get my cookies -- there's a cookie jar right at the entrance to the kitchen. And I get a lot else too.
It seems the top non-food requests from Nadine (and me) from helpers has been -- Underwear and Real Toilet Paper! Oh the things people miss. I heard this isn't uncommon. I was SO happy the morning after Lauren brought me two whole packages of underpants -- 14 pairs! And Nadine has had a fine time with hers too.
___________________
"I HAVEN'T SEEN A HOUSE IN A LONG TIME" (Nadine)
Sunday was another glorious day. I got some time alone with Barry while Nadine slept. Then we walked in and she was awake and perky. This time, unlike on Friday, she wasn't a bit tired after her shower.
Nadine, Barry, Erek and I took a long walk. Her gait was steady and confident, her head was unbowed. She walked briskly with confidence, and I could see the girl who glides gracefully through the contra dance lines, striding down the hallway.
"I haven't seen a house in a long time", exclaimed Nadine. We'd reached a window; she gazed out at trees and, yes, a real house. Then we walked back around the corridor and found some exercise stairs, low enough so she could climb up and down even with Winnifred attached (Winnifred is her IV pole, on which Gladys (a pink flamingo is perched along with whatever medicine she's getting at the time). We returned to her room in triumph.
Dr. Bruckner visited, and the mood was jovial. I asked about the summer, and found out she had options! If blood counts were okay, she might get to the National Flute Association flute choir in August, maybe a few days at Ashokan Northern Week Camp -- even some contra dances! No swimming, no camping, no "active" farms or zoos.
I'm nervous about caring for her after she gets out, even though I've been assured I'd get the "hang" of it and that there were cycles of blood counts.
IT'S JUST US GIRLS NOW.
Sunday night Erek left for two days in DC with work and girlfriend, and Barry left for work. Nadine and I were alone together, the first time we'd have an evening like this since she was admitted to the hospital. We had a sweet, mellow, special evening. We took a walk together, out of the hospital into a beautiful day. Nadine marveled at the feel of the wind on her fuzzy bald head -- a totally new sensation for her, and she loved it. We went all the way to the entrance to the parking garage, then inside, past the lobby and up to her room.
She took out her flute and played it for the first time in weeks. At first there was a quaver in the tone, which alarmed her, but as she kept at it the quaver evened out into her characteristically gorgeous tone. She burst into Mozart's Concerto in G, and it was glorious. I noticed a slight difference in her style, a new smoothness and even a new assuredness, the notes flowing fluidly and expressively together in an enhancement to her already beautiful flutework. I beam at the thought of it.
Right before bedtime, she asked for some more minestrone soup. Soup and love, it couldn't have been better.
MONDAY
Monday, Nadine asked for her chain maille supplies and selected dangly earrings to enhance hwer already lovely silhouette. Sylvia arrived with my friend Sue -- she and I took a brief walk together, arm in arm.
FRIENDS FOR ME TOO
About a week earlier, my wonderful friends Sue and Betty had dragged me out for a long walk in the sun, arm in arm and hand in hand. We went all the way to Ronald MacDonald House, where we had lunch on the sunny deck, exchanging stories and, even more important, each other's company. Diana and I have also walked together.
Other wonderful friends have come, not only talking about Nadine but also reminding me that there is a "me" too.
REST OF THE DAY
Sylvia, Nadine, and I visited the wig store downstairs. The wig lady was large with close-cropped hair and an outrageous sense of humor. Nadine chose wigs that looked outrageous on her, selecting about 5 from the "free" box (including some with gray curls, and some with reddish ones).
An exuberant squad of 6 young,fiddlers mostly from the Roch Phil Youth Orchestra plus Alice Kanack poured in about 6:30, piled into Nadine's room and played some lively, wonderful traditional music. Nadine, still in bed, joined them on flute. The sounds were amazing, with driving tunes like Tamlin, jigs, and two beautiful waltzes, South Wind and Margaret's Waltz. I ahappily sat on the windowsill with camera and video, taking in the sounds and happy faces. Another friend appeared with a homemade pie. It was merriment all night.
I went back to the house, with its cookies, and went to bed.
Subscribe to:
Posts (Atom)