I've been hesitant to blog lately. We're all dealing with the strain of the after effects. I'd like to post something rosy, but that would be dishonest. I started the blog to inform friends and family, and to have a record others could use to get a realistic idea of our path with ALL. Now I almost regret having started it since I feel like I need to keep going, and to my surprise, what we are going through right now is almost as challenging as the chemo and transplant.
Don't get me wrong: we are all blessed beyond measure with Ryan's survival and the success of the transplant. It was what we prayed for and dreamed of.
I underestimated the emotional tailspin that would follow.
Ryan feels pretty lousy most of the time. He's having trouble eating and drinking adequately. As a result a PICC line (an IV that goes from his arm into the large veins in his chest) was placed last week so he can get IV fluids at home. After a few days of adequate hydration, he had been able to eat and drink more.
Brad Ferland came to visit and cheered him up watching some silly tattoo show on TV and making fun of the show. Last weekend Ryan went to New Hampshire to see "The Hobbit" wearing a mask aand gloves in the balcony of a small town theater. Brad arranged for Ryan and Sophia to have the balcony to themselves and to enter via a separate door after others were seated to avoid contact with crowds. Then they spent the night at a hotel in NH for their anniversary. He traveled with his IV in a backpack.
Shannon came for Christmas and I think that cheered him up a bit. She was able to get him laughing.
While I really can't speak for him and I don't want to misrepresent his experience, much of the time he seems to have lost interest in most things. And I know he gets really tired of me monitoring his hydration status and how much he eats.
I am walking a tightrope trying to let him be an autonomous adult while at the same time keeping tabs on what's going on medically.
We've made it through the really hard physical stuff, and past the uncertainty of survival. We were braced for all that. Now comes the day-to-day drudgery of survival. The guilt (a good friend we met at AMC is struggling with repeated recurrences), the misery of the chemo side affects, the uncertainty of what the future holds, the denied emotions.
Early on in this process, the staff at Dana Farber told us of their resources - counselling, a library with books about cancer and survivorship, on-line and community cancer society and leukemia society support. At the time, we were focused on his treatment and tackling the next battle. We were optimistic and determined. We felt like we were doing just fine. We didn't really think about the reality of living with the long term side affects and the uncertainty about the future.
Now I'm feeling burned out, and all of us are struggling to re-establish some sense of "normal". The cancer and Ryan's continued malaise have become the elephant in the room. Ryan doesn't want to be defined by his disease. But he has none of his pre-cancer life. No college, no freedom to eat his favorite foods (and none of them taste right anyway), no nearby friends. Just the student loans which need to be deferred and he worries about repaying. Right now everything seems suspended in time. It will be another 10 months before he can live on his own or get a job or go to school.
My life for the past 7 months has been defined by Ryan's illness. Ryan is doing well enough that he no longer needs me available 24/7. I have things I want to do, but I have been reluctant to make any commitments or start anything for fear that Ryan will need me. It's time to extricate myself as much as possible and let Ryan and Sophia assume responsibility for his care.
So we're all struggling to make the transition from the fight for Ryan's life to living. For some reason I wasn't prepared for this stage. Maybe I was afraid to plan for this - his survival - out of fear that we'd never get here. Or maybe just taking one day at a time. Or maybe it's just emotions of the holidays. Or maybe we were all just so happy that he was going to survive that we were in denial about the rest of the struggle that lay ahead.
I know that these are things we all need to work through. Little by little we're each facing our demons and our fears. We'll figure it out.............
Thursday, December 27, 2012
Wednesday, December 12, 2012
December 12: T+48, hospitalized with fever
Yesterday I got caught up with my posts, reveling in how well Ryan's been doing. I may have jinxed him.....
Yesterday afternoon, Ryan felt really cold - not unusual. But he felt so cold that he went to bed around 4 pm and put on lots of extra covers. He woke up at 6 pm, still cold. At 8 pm he recognized that he had been shivering for several hours and took his temperature which was 101.
We called Dr. Cutler who told us he would need prophylactic IV antibiotics for at least 48 hours and a fever work-up with blood cultures. We packed up the usual hospital amenities like computer, iPod, chargers & underwear and went to Albany Med's ER. We had them call Dr. Cutler, per his request, for his recommendations. Great care - prompt treatment of his nausea and headache, protective isolation, etc. Because of the nausea drugs and pain meds, he slept through most of the ER visit and was sleeping when I left him at 3 am.
We took along his medicines just in case they don't have the tacrilimus in their pharmacy - and so he can self treat for nausea and pain if we run into problems!! Not kosher, but I'll do what I need to do to keep him comfortable.
Ryan asked the nurse (who is GREAT) to put on a mask. She replied, "Oh, you want me to wear a mask?" I was impressed with Ryan's response: "No, I don't want you to wear a mask. Everybody needs to wear a mask."
I warned them up front that due to some past experiences I was a bit of a control freak and I would be proactive in getting what he needs. The nurse was understanding. I asked her to put my phone number on the front of the chart and ask the resident to call me after he saw Ryan - wanting to be sure that all the bases are covered in the orders.
He was pretty dehydrated with a heart rate of 150 (his normal is around 65-70). The nurse called around 4 am to say that the resident who was to admit him was tied up with other emergencies and said that Ryan's admission exam would be done in the morning since he is stable. I asked the her to get a verbal order for a bolus of IV fluids and an increase in the rate to keep him hydrated and she readily agreed.
He was given tap water to drink with his pills in the ER. The only "safe" water was in the vending machine. So I bought him a couple of bottles. Today I packed up some Dasani and Gatorade, bought some frozen entrees, cereal bars and cereals that will be safe for him to eat. Foods that have been sitting on trays aren't safe, and he doesn't like to food there anyway.
I took Kaia to her speech therapy today and went to my physical therapy appointment (plantar fasciitis is the PITS!), now I'm off to Albany Med.
This is most likely just a bump in the road - I expected that this would happen at some point, if not repeatedly. Just hoping the antibiotics work and that he comes home in a few days. More prayers!
Yesterday afternoon, Ryan felt really cold - not unusual. But he felt so cold that he went to bed around 4 pm and put on lots of extra covers. He woke up at 6 pm, still cold. At 8 pm he recognized that he had been shivering for several hours and took his temperature which was 101.
We called Dr. Cutler who told us he would need prophylactic IV antibiotics for at least 48 hours and a fever work-up with blood cultures. We packed up the usual hospital amenities like computer, iPod, chargers & underwear and went to Albany Med's ER. We had them call Dr. Cutler, per his request, for his recommendations. Great care - prompt treatment of his nausea and headache, protective isolation, etc. Because of the nausea drugs and pain meds, he slept through most of the ER visit and was sleeping when I left him at 3 am.
We took along his medicines just in case they don't have the tacrilimus in their pharmacy - and so he can self treat for nausea and pain if we run into problems!! Not kosher, but I'll do what I need to do to keep him comfortable.
Ryan asked the nurse (who is GREAT) to put on a mask. She replied, "Oh, you want me to wear a mask?" I was impressed with Ryan's response: "No, I don't want you to wear a mask. Everybody needs to wear a mask."
I warned them up front that due to some past experiences I was a bit of a control freak and I would be proactive in getting what he needs. The nurse was understanding. I asked her to put my phone number on the front of the chart and ask the resident to call me after he saw Ryan - wanting to be sure that all the bases are covered in the orders.
He was pretty dehydrated with a heart rate of 150 (his normal is around 65-70). The nurse called around 4 am to say that the resident who was to admit him was tied up with other emergencies and said that Ryan's admission exam would be done in the morning since he is stable. I asked the her to get a verbal order for a bolus of IV fluids and an increase in the rate to keep him hydrated and she readily agreed.
He was given tap water to drink with his pills in the ER. The only "safe" water was in the vending machine. So I bought him a couple of bottles. Today I packed up some Dasani and Gatorade, bought some frozen entrees, cereal bars and cereals that will be safe for him to eat. Foods that have been sitting on trays aren't safe, and he doesn't like to food there anyway.
I took Kaia to her speech therapy today and went to my physical therapy appointment (plantar fasciitis is the PITS!), now I'm off to Albany Med.
This is most likely just a bump in the road - I expected that this would happen at some point, if not repeatedly. Just hoping the antibiotics work and that he comes home in a few days. More prayers!
Tuesday, December 11, 2012
December 1: 37 days post transplant
Ryan's doing remarkably well. His hematocrit (red blood cell measure) was 34! Normal is 36 or higher. His platelets are 146,000 - normal!! The WBC is normal. The "differential" - measurement of the kinds of white blood cells - is a little unusual with 20% eosinophils. Sometimes they rise with GVH (graft-vs-host) disease as well. Hanging in there and hoping this itch isn't a harbinger of uglier things to come.
Insurance continues to be fun. 'Nuf said.
There are little humorous things along the way that make the journey light, yet also poignant. Ryan had been a Tolkien fan since he was little. As luck would have it, the movie version of The Hobbit comes out in a few weeks. And movie theaters are on the short list of no-go's.
At his last appointment, Ryan attempted negotiations with Dr. Cutler: If I wear my mask and gloves and clean the seat with antiseptic wipes and go when it's not crowded (when would that be?), can I go see the Hobbit?NO
The "No" was out of Dr. Cutler's mouth almost before the last word was out of Ryan's mouth.
Dr. Cutler smiled and told Ryan that he would be taking his son opening night, and he'd be sure to tell Ryan all about it.
Little things that we all take for granted. Yet it's a small price to pay. We've reached the point where we're now confident that Ryan will survive. It's remarkable how quickly our priorities change. From normal life to fighting for survival to taking survival for granted and resenting the limitations.
To be a 23 year old married man living in your parent's house, dependent on others for everything and spending a year of your life in confinement has to be a real challenge. Overall Ryan bears this with good humor and positivity.
I'm wondering if I can arrange a private showing of The Hobbit. Maybe if I play the Cancer Card.......
Insurance continues to be fun. 'Nuf said.
There are little humorous things along the way that make the journey light, yet also poignant. Ryan had been a Tolkien fan since he was little. As luck would have it, the movie version of The Hobbit comes out in a few weeks. And movie theaters are on the short list of no-go's.
At his last appointment, Ryan attempted negotiations with Dr. Cutler: If I wear my mask and gloves and clean the seat with antiseptic wipes and go when it's not crowded (when would that be?), can I go see the Hobbit?NO
The "No" was out of Dr. Cutler's mouth almost before the last word was out of Ryan's mouth.
Dr. Cutler smiled and told Ryan that he would be taking his son opening night, and he'd be sure to tell Ryan all about it.
Little things that we all take for granted. Yet it's a small price to pay. We've reached the point where we're now confident that Ryan will survive. It's remarkable how quickly our priorities change. From normal life to fighting for survival to taking survival for granted and resenting the limitations.
To be a 23 year old married man living in your parent's house, dependent on others for everything and spending a year of your life in confinement has to be a real challenge. Overall Ryan bears this with good humor and positivity.
I'm wondering if I can arrange a private showing of The Hobbit. Maybe if I play the Cancer Card.......
December 11: T+46 Naughty eosinophils!
Ryan's had what seemed like the seven-year itch since he got home. Looking at all possible causes we've eliminated many medicines, changed to Dreft soap, added a second rinse to the laundry cycle, soaked in Aveeno baths, lathered on lotions, taken mega-dose anti-histamines. All to no avail.
Eosinophils are the white blood cells associated with histamine and allergic reactions. They are normally around 2-3%. Ryan's were at 20%. This suggested an allergic reaction of some kind - although "eo's" can also go up with GVH disease. No other symptoms or lab results suggested GVH, so we began focusing on potential allergens.
Delighted that he's growing blood cells and that they are capable of working! Sometimes immature cells can act a bit like teenagers (apologies to any youth reading this - and a disclaimer that I still sometimes default to my youthful rebelliousness) - they act out. So I knew there was a possibility that this was simply his new cells "doing their thing". And that this may just be a storm we need to ride out..........
Racking our brains and tweaking things daily, one day I suggested they wash not only the coverlet for their comforter, but the comforter as well. Ryan and Sophia told me it was down and couldn't be washed. Light Bulb Moment!! We switched comforters and - voila! - no itching the next day. Whew!!! Cured! We'll be avoiding goose down for a while.
Ryan's counts are (drum roll....) - NORMAL!! The cells still need to mature to be able to effectively protect him from infection, and we're not out of the woods in terms of chronic GVH which can occur in the next few months. He's still very nauseous and struggling to maintain his weight. And cold all the time, and tired and weak. All this is part of the process, and time is our friend now. We have confidence that with each day and week and month that goes by he will slowly gain strength and return to health.
I had the opportunity a few weeks ago to meet with the transplant nurse coordinator and the patient affairs representative from Brigham & Women's Hospital to discuss the frustrations we had during Ryan's hospitalization. In preparation for our meeting, I tried to look at the problems we encountered from a "consultant" point of view - looking at the system and policies, what went wrong, possible causes, policy changes that might minimize recurrences of the lapses, etc. I wrote up a document identifying the problem and the setting in which it occurred, which level provider was involved (nurse, resident, attending, pharmacy, etc), and suggestions for policy modifications that may correct the problems.
I was a bit nervous before the meeting - worried that my emotions would get the better of me and I'd turn it into a whine-fest. As I gave them copies of the document, I had to warn them that my attempts at objective observation were unavoidably tainted with a bit of maternal angst. It was gratifying to be able to go over things point by point and discuss with them things that I thought might be contributing factors and make suggestions that might help others.
I know in my heart that without the resources and expertise of those at Dana Farber Cancer Institute and Brigham & Women's Hospital Ryan would not be alive. And I am truly and deeply grateful for this. While it was therapeutic to me to "vent", my hope is that by reviewing our experience, procedural changes can be made that will take the level of care experienced by patients to the same level of excellence as the transplant itself.
Eosinophils are the white blood cells associated with histamine and allergic reactions. They are normally around 2-3%. Ryan's were at 20%. This suggested an allergic reaction of some kind - although "eo's" can also go up with GVH disease. No other symptoms or lab results suggested GVH, so we began focusing on potential allergens.
Delighted that he's growing blood cells and that they are capable of working! Sometimes immature cells can act a bit like teenagers (apologies to any youth reading this - and a disclaimer that I still sometimes default to my youthful rebelliousness) - they act out. So I knew there was a possibility that this was simply his new cells "doing their thing". And that this may just be a storm we need to ride out..........
Racking our brains and tweaking things daily, one day I suggested they wash not only the coverlet for their comforter, but the comforter as well. Ryan and Sophia told me it was down and couldn't be washed. Light Bulb Moment!! We switched comforters and - voila! - no itching the next day. Whew!!! Cured! We'll be avoiding goose down for a while.
Ryan's counts are (drum roll....) - NORMAL!! The cells still need to mature to be able to effectively protect him from infection, and we're not out of the woods in terms of chronic GVH which can occur in the next few months. He's still very nauseous and struggling to maintain his weight. And cold all the time, and tired and weak. All this is part of the process, and time is our friend now. We have confidence that with each day and week and month that goes by he will slowly gain strength and return to health.
I had the opportunity a few weeks ago to meet with the transplant nurse coordinator and the patient affairs representative from Brigham & Women's Hospital to discuss the frustrations we had during Ryan's hospitalization. In preparation for our meeting, I tried to look at the problems we encountered from a "consultant" point of view - looking at the system and policies, what went wrong, possible causes, policy changes that might minimize recurrences of the lapses, etc. I wrote up a document identifying the problem and the setting in which it occurred, which level provider was involved (nurse, resident, attending, pharmacy, etc), and suggestions for policy modifications that may correct the problems.
I was a bit nervous before the meeting - worried that my emotions would get the better of me and I'd turn it into a whine-fest. As I gave them copies of the document, I had to warn them that my attempts at objective observation were unavoidably tainted with a bit of maternal angst. It was gratifying to be able to go over things point by point and discuss with them things that I thought might be contributing factors and make suggestions that might help others.
I know in my heart that without the resources and expertise of those at Dana Farber Cancer Institute and Brigham & Women's Hospital Ryan would not be alive. And I am truly and deeply grateful for this. While it was therapeutic to me to "vent", my hope is that by reviewing our experience, procedural changes can be made that will take the level of care experienced by patients to the same level of excellence as the transplant itself.
Subscribe to:
Posts (Atom)