1) Incredible weakness. I was not prepared for how weak I would be post transplant. When I moved into the hotel, I could not get up the 10 stairs to the upper room without stopping to rest. It took me well over half an hour to get dressed and brush my teeth because I had to sit down between each step. I did gain strength rapidly and could do more each day but I continued to need a nap each afternoon until around a year post transplant. Even today, my energy is not what it used to be prior to transplant. I require more sleep at night and I cannot do as much in a day as I used to.
2) No appetite or taste. The chemo and the acute GVHD really do a number on your desire to eat. The nausea itself is pretty bad but you add the mouth sores and the lack of taste buds on top of it and you end up with no desire to eat. In fact, eating became the least enjoyable part of my day. My poor family tried everything from Ensure and Boost to ice cream and jello. Some days I could get sherbert or a popsicle down but even those tasted bad. Of all things, pop tarts with TONS of water to drink seemed to work most days as well as chicken broth and sometimes ice cream if it wasn’t too sweet. I lost around 75 pounds by the time I was 6 months post transplant. The dry mouth and mouth sores were very very difficult and painful. I highly recommend ice chips and asking the nurses if they have a lidocaine mouthwash. Loyola did and it helped some but anything was better than nothing. The mouth sores had pretty much cleared by a month post transplant but then my tastebuds were not working and nothing tasted good and most things really tasted awful. I lived on soups, broths and ice cream for several months post transplant.
3) So many medications. At one point, I was taking 32 pills a day. Today, 21 months post transplant, I take 8 different medications and three supplements for a grand total of 19 pills a day. When I see my doctor on Monday, maybe I’ll be able to cut that down some. I can dream! The copays alone are expensive. Thankfully we have good insurance. On top of that, I still have three creams for various GVHD issues and during isolation, I had several more. Plus I had the Hickmann (similar to a PICC line but under my collarbone) which required daily flushing. My caregivers were all trained to do that and all did so wonderfully.
4) The restrictions. Seriously, the restrictions are unreal. Don’t do this. Don’t eat that. Don’t touch this, don’t go there. Basically, I lived in a bubble for months. For the first 100 days after transplant, I could not eat anything uncooked or anything that may not be cooked well. No fresh produce. No tap water. Nothing from a restaurant or fast food. My caregivers had to prepare all food for me. I wasn’t even allowed in the kitchen because my platelets were so low that a burn or cut would likely lead to heavy blood loss and/or major infections. I couldn’t eat yogurt or soft cheeses or lunch meats unless they were pre-packaged (think Oscar Meyer). No food could be “left over” more than 24 hours. There was literally several pages of guidelines for foods and food preparations that my caregivers had to follow. Then there was the visitor restrictions. Visitors had to remove shoes, wear a mask, wash hands and not sit near me or touch me. I couldn’t t go in public unless it was outdoors like walking around the hotel parking lot. There were restrictions about going outside after it rained (couldn’t for 24 hours), no wood burning fireplaces, had to leave room when housekeeping vacuumed, and I coudn’t be in contact with anyone who was even slightly ill. This meant that my three boys were not able to visit very often because they were often ill with runny noses or coughs or anything else that little kids typically get. When they could visit, they couldn’t actually come into my room so I visited them outside. I had to wear a hospital mask, gloves, gown and most visits could not hold or hug them. It was the worst thing for a mother to have to deal with.
5) Mortality. Heaven. My spouse remarrying. My children growing up without me. Someone else taking on the role of my children’s mother. These were all things that I had to consider as very real possibilities. There were 4 people in my cohort of stem cell transplants. Only 2 of us made it out of the hospital. This wasn’t a “you’ll be fine, its just painful” kind of procedure. This was a “have you thought about what you want to happen if you don’t make it” procedure. I had to have very difficult conversations with my husband about what I wanted my funeral to be like. What I wanted done if I were to die. That I didn’t want my child red to have to see me in a casket and I’d rather be cremated. I had to tell the love of my life that if I were to die, that I wanted him to be happy and move on and hopefully fall in love with someone else. My kids all had to learn about death and dying and heaven. They had many questions that took a lot of though to answer in a way that was honest but didn’t scare them. My middle son still has some residual anxiety from all of the things he had to deal with at such a young age. My youngest has no memory of me with my own real hair. My husband told me that at one point, he had planned to sell our home if he needed to if I were to die. Our home that he built with his own two hands from the ground up. Our home that we planned and worked on together. It broke my heart that he would even have to consider this but it was a distinct possibility that either we would need to downsize to pay the bills or that I would die and the memories we had in this home would be too much for him.
6) Missing out. I missed out on seeing my youngest’s first steps. My husband sent me video but it wasn’t the same. I missed my baby’s first steps. I missed his potty training (ok, that wasn’t so awful), I missed my oldest’s Mother’s Day Tea that his kindergarten class put on. I missed Christmas programs and field trips and birthday parties. When I add it all up, from initial diagnosis to the day I came home from isolation, I was either in the hospital or in isolation for about 32 weeks. From September 2014 to August 2016, I wasn’t even home for 32 of those weeks. That’s a lot of time to not be with your husband, children and in your home. When I was home, especially late 2014 and post transplant 2016, I was either too sick from chemo side effects or GVHD to do anything with my family. I finally feel like I’m a full time mom again. 21 months post transplant. Now I want to make up all the time I lost but some I cannot. Some is just lost and I have to accept that and move on while treasuring every moment I have with my boys and husband.
7) GVHD and Chemo side effects. Let me list all the things I have had as a result of the transplant and/or the chemo used for the transplant: alopecia (hair loss), extreme dry eyes, vision changes, dry mouth, weight loss, fatigue, low immune system, loss of appetite, skin rashes, extreme sun sensitivity, major bowel incontinence (see previous post), sexual issues (see previous post), short term memory loss from all of the chemo, skin peeled off bottom of feet and palms of hands in sheets of skin (gross..so gross), fingernails detached from nail bed while new ones grew underneath, residual cough that never goes away (from Bulsafan...a conditioning chemo), and probably others that I have forgotten. Today, my biggest lingering GVHD issues are the extreme dry eyes, vaginal issues and hair loss. I’ll never ever be the same as I was prior to transplant but I’m alive and mostly living a normal life.
So if you’ve read all of this, you’re either scared to death to go through with your own transplant or you’ve been through it and understand what I”m talking about. Or maybe you’re not dealing with AML directly but are a caregiver and this gives you an idea of what you may encounter. I urge you to read my next post... the GOOD part of all of this. Yes, there was much good. I promise to post that one very soon. Hang in there.
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