Well, I must be feeling better because I feel like blogging.......its been a rough month and a half since I wrote anything of substance. I can say the stem cell transplant was the hardest, darkest road I have ever had to travel. I still start crying when I think about some of the dark times.
As many of you know, I was fighting fluid imbalance when I went into the hospital with a lot of abdominal bloating. I said I looked 8 months pregnant. Well, when the transplant started adding in fluids...fluids to carry the chemo, stem cells, antibiotics, antifungals, etc....it looked like I was 9 months pregnant with octuplets. This put incredible strain on my abdominal muscles and they were stretched to the breaking point. Which caused lots of pain there as well as incredible back aches where they attach to my spine. My legs were swollen to about 4 times there normal size as well and they hurt so much. Portions are still numb from the nerve damage due to the swelling but the doctor said that should resolve over time.
My true body weight was probably 105-110 pounds (I normally weigh 125-130) but the fluid had me weighing 170 pounds. That's 60-65 pounds of water. Al and Amy and the nurses were on me to walk but I was so physically diminished and had 60 pounds of weight in my mid-section and legs, no wonder I couldn't.
My husband and my daughter brought me through those dark days with their nursing and medical knowledge and encouragement. Having them to take me to the shower, change my gown and thread all the tubes and wires through, ask the right questions, help me with other issues was a God send. I told Alan that I know he saved my life because I don't think I could have made it without the nursing care he provided. Amy was there every night. Some nights, I barely knew she was there but she came any way always humming "Surely the Presence of the Lord is in this place." That brought me such comfort.
My primary nurse at the James Cancer Hospital was a perfect nurse for me named Bonnie. She was equal parts pragmatic compassion, experienced professional and great sense of humor. At one point toward the end, they sent me to drain fluid from my abdomen. They took off 5 liters. Think about that in the soda aisle at the grocery store. It provided a lot of relief but changed my dynamics so much it was hard to breathe, almost to the point of panicing. At one point, Bonnie was in there by herself and she asked how I was doing and I told her I was scared. She told me as she hugged me, "You'll be fine. From what I've seen you're a fighter and that's what you need to be."
After 4-1/2 weeks, 3 of which I was basically bedridden, I transferred to the rehab hospital to regain some strength and function. Originally they said I would be there 2 weeks and 2 days. I asked them early on what I needed to do to get out after 1 week and 2 days and I did it. I was more with it there. Amy came every night and every other night helped me with my shower. She changed my sheets one night when the staff hadn't done it. She was such a comfort to me. I asked her as she was drying me after a shower, "Did you ever see yourself doing this?" She said, "Maybe when you were 80 but not at 50." We had a good laugh over that.
Alan was there every morning to help dress me and meet with the doctors and every evening to help me with whatever was needed. It was a little easier on him than when I was so sick in the transplant unit. He told me later he had never been that tired in his life which is saying a lot for someone who works nights. It was such a blur for both of us but the rehab hospital allowed him some time to catch his breath.
I came home on May 8 and have been doing home PT and/or OT every day and outpatient PT & OT twice per week. It was slow going at first. I left rehab being able to walk 500 feet. Yesterday, I walked 1/3 mile around the neighborhood. I left OT today and the therapist told me I'm an example of why its good to be in shape before you get sick. I can progress through things so much faster. She's having a hard time coming up with exercises to challenge me.
So, day by day, I do normal things like go to the grocery store, cook a little, drive Claire places...or let her drive me since she has her learner's permit. I'm sad I missed her entire freshman Lacrosse season. She ended up playing varsity, was the second leading scorer on her team and got first team all-conference and second team all-district. But, because Al was on FMLA, he made all her games which he normally hasn't been able to so there's the silver lining there.
I appreciate all the cards, gifts and most importantly the the prayers and positive thoughts everyone is sending my way. It provided so much strength during the dark times knowing I had so many people rooting for me. I hope to be back at work by the beginning of July and plan on going to Claire's lacrosse tournaments this summer. That will be the beginning of a return to normal.....whatever normal is.
