February 21, 2018 Wednesday—Happy Birthday!—1 year!!
Yes, you read correctly! Today is the year mark of my transplant. Transplant day is referred to as the patient’s second birthdate because the transplants give us another chance at life. Technically, I have four birthdates: the day I was born, the day I became a child of God, my auto transplant date in 2014, and my allo transplant date! To celebrate, Mom and I went out to Olive Garden with my friend Danielle and her mom Diane. Danielle is the young woman I met while at Hope Lodge, and our transplant date is the same: Feb. 21, 2017.
This week has been full of a lot of “remembering” for Danielle and I and our moms. Remember how dizzy I was from the anti-seizure medication? Remember the nights of coughing from the croup and the only thing that calmed it was cup after cup of Throat Tamer Tea? Remember the night I landed in the ER from an extreme drug reaction? Remember the rude awakening on the morning that I woke up with terrific eye pain from acute GVHD?
Remember how Danielle and I slept the days away at Hope Lodge on the recliners? Remember the big snowstorm that kept all of us in the Lodge except Danielle and Diane? Remember Masaki, the nurse that irritated both Danielle and I, but we can’t figure out why because he was a very good nurse? Remember drinking Ensure and Boost and more Ensure and Boost? Remember…remember…remember. Some of it I can look back and laugh at. Other parts are still a blur. Still others make me shudder with memories I’d rather not recall.
It’s also been a week of gratitude. I look back and still marvel that I got through it. Those days of illness felt like an eternity to me. By the grace and power of God, I kept plodding on, even on the days when my courage failed me more times than I could count. I’m also grateful for my mom’s steadfastness. She helped me keep going when I thought I couldn’t and sometimes held me when I cried because of the pain. She found ways to make me laugh, such as being grateful for indoor plumbing during the days the BK virus irritated my bladder so badly. She fed me like a baby during the week I was mostly blind. She slept night after night on the couch in my hospital room or endured sleepless nights with me without complaint. Thank you, Mom.
I’m grateful for Dad, who during the first 3-4 months, made the 800-mile trip from Illinois nearly every other weekend. When the taste in my mouth after chemo made water taste awful to me, he got a bottle or two of nearly every available drink in the store for me to try. He actually found me a liquid I could tolerate. When I was really, really weak, he either carried or supported me to and from the bathroom. When I was so cold all the time after discharge, he found me a delightfully fuzzy, electric blanket. He encouraged me with the progress he saw in my health and strength every time he came to visit. Thank you, Dad.
I’m grateful for my sisters. I’m grateful for Sara who willingly gave her stem cells to give me another chance at life here. I might not be alive today were it not for her. She came different times to spell Mom at the sometimes-painful responsibility of caregiving. Hearing her laughter invariably lifted my spirits. She surprised me with a visit during my time in the ICU with pneumonia. She read me books when I was too blind to read and needed something to get my mind off the pain.
My sister Elizabeth too came to spell Mom. After my five-day hospital stay in August, she stayed for a week while I gained back some energy. Their whole family stopped at my house in April and showed me the pictures from their 3-month stay in Bangladesh. I needed the distraction that day, as I was already experiencing near black-outs from the pneumonia. Thank you, both of you.
I’m grateful for the visitors, the cards, the texts, the emails, and the prayers. During the worst of those months, I didn’t have enough strength or presence of mind to string words together in prayer. When pain medication clouded my perception of God’s presence, all the love and prayers and caring reminded me that I was not alone. Thank you, all of you who held me up on wings of prayer.
I’m grateful for returning strength and health. No, it’s not perfect. The cancer still isn’t gone. Yes, I have continuing weakness and my lungs could be better. But oh, it could be so much worse! I could have lost my sight. At my checkup with the ophthalmologist the other day, he repeated his astonishment that my eyes show no sign—other than dryness—of the Stage 3 eye trauma the GVHD caused. The BK virus could have resulted in a bladder removal. The pneumonia could have taken my life in May, and I would have missed the preciousness of life during this year. I could have severe, chronic GVHD scarring my lungs or spreading a rash all over my skin. Mr. Brent could have been ineffective. I have so much to be thankful for! God is good.
March 5, 2018 Monday
I’m going to the Transplant Survivorship Symposium in Denver, CO, the end of April, Lord willing! Yes!! Can’t wait! In some research I was doing a few weeks ago, I stumbled across a website that contained info about transplants and complications. One of their pages mentioned the symposium. When I saw the good topics they had on transplant, GVHD, and other complications, plus discussion groups, I so wanted to go! Plus, who can pass up Denver, CO? Mountains, blue skies, Royal Gorge, Pike’s Peak, the Million-Dollar Highway….Ah, beautiful dreams!
The registration fee is very affordable. I could easily register myself and a guest for less than $100. The biggest expense was the hotel, and I simply can’t afford it. So, I put it on a back burner, hoping that till another year I might have more funds. Until, Mom was here for a week, and I mentioned the symposium to her in passing, saying I’d like to go and I’d love to have her go with me, as she was my main caregiver, but that I can’t afford it. She talked to Dad about it, and Dad said immediately, “Of course. Go. Make the plans. I’ll reserve the hotels for you and help with expenses!”
So, we did, planning a long weekend around Denver, with two days of sightseeing prior to the two-day symposium. I sent Dad the info, and he called me back, saying, “Don’t you want to plan a longer trip? You could swing north or south and stop at points of interest on the way out or the way back.” He insisted he didn’t mind helping with extra expense. Don’t I have a generous Dad? 🙂 I sure think so! Thanks, Dad.
So, as it turned out, Mom and I are planning for about a 14-day trip to Colorado for two days of sightseeing plus the two-day symposium, a day in Wyoming, 3 days or so in South Dakota, a day or two in Minnesota, and then swing back south to Illinois where my parents live. We hope to stop and see some relatives along the way if it suits them. We plan to see Seven Falls, Royal Gorge, Register Cliff along the Oregon Trail route, Mt. Rushmore, Badlands, and the Laura Ingalls Wilder Home. Our itinerary is planned, and hotels are all reserved, thanks to Dad. However, the hotels are not prepaid, which means that if our trip doesn’t go as planned, we can cancel or reschedule our hotels as needed.
One thing we did have to watch out for in our plans is the high altitude in Colorado. That’s the main reason why we are not going up Pike’s Peak. Denver is about a mile high, as is most of the surrounding area. A mile high shouldn’t exacerbate my breathing issues too much. 14,000 feet sure would though! That’s was also one of the reasons why we are not planning on doing any scenic mountain drives. Most of them are also at too high of an elevation for me right now. Plus, in April, at 10,000 feet or higher, there is still a significant risk for ice and snow. The last thing we would want to do is go sliding over a cliff in Mom’s car! I also made sure to check that the attractions we want to see have minimal walking or elevators in addition to stairs.
The only thing I still need to iron out is oxygen while on the trip. Enough filled oxygen bottles for two weeks is well, kind of impossible. Pretty sure the car would get overloaded! I will probably need to use a portable oxygen concentrator, but I will need enough battery life to last me all day on our sightseeing expeditions. I will have to see what options my oxygen supplier can give me.
I’m thinking I’d be better off with a more portable oxygen concentrator, that could offer me both continuous and intermittent flow. I could use the intermittent setting during the day and use the continuous setting at night (or for brief periods during the day if I get especially short of breath). However, battery life on those things gives me little more time than my oxygen tanks do. The solution is to switch out batteries and recharge them overnight. I’d really like to buy a concentrator of my own so I don’t have to keep paying rent for what I have, but most new ones start at $2,500 and I’m a bit wary of used ones. I’m asking God to provide….
Speaking of oxygen, I’ve been a bit frustrated lately. I’ve been hunting for forums online for oxygen-dependent folks. I’m coming up mostly empty. There are forums for cystic fibrosis, COPD, and pulmonary fibrosis patients. Practically all patients with these conditions end up on oxygen eventually. However, most of those forums deal with many more issues than just oxygen use. In addition, the majority of patients are 50 or over except for cystic fibrosis patients, and they often have so much more important stuff going on physically that oxygen issues are a somewhat minor issue.
Am I an oddball? Maybe. Most lung cancer patients don’t live long enough to need oxygen for very long. Plus, young lung cancer or lung lymphoma patients (like me) are quite rare. I’m not finding many other young adults who are reasonably healthy otherwise, but on oxygen due to mostly static lung scarring. I want to find some discussions on how to navigate a reasonably normal life while on supplemental oxygen. I’m not having much luck so far, so I’m just figuring it out on my own and using google. However, so much of the info about living with supplemental oxygen is published by oxygen supply manufacturers, so I’m not very trusting of Google’s sources.
Talking about rare lymphoma. Searching for patients with lung cancer led me to some articles on primary lung lymphoma (PPL). (I will clarify: I do not have lung cancer. I have lymphoma of the lung, two completely different beasties. That distinction puzzles most people, but lymphoma can be odd all around.) I was startled to read that primary lung lymphoma of the DLBC type that I have is .04% of all lymphomas. I knew it wasn’t so common, but I didn’t know it was that rare. In addition, it is even rarer for a person younger than 50 to get it. Most often, primary lung lymphomas arise from immune suppression, such as patients with HIV, the Epstein-Barr virus, or organ transplants.
Technically, it’s a bit fuzzy as to whether or not my lymphoma could be (or was) classified as primary lung lymphoma. A patient is given that diagnosis when the lymphoma doesn’t spread beyond the lungs and immediately surrounding lymph nodes. By the time I was diagnosed, the lymphoma had mostly obliterated the left lung, spread into the mediastinal (center) region of the chest, and 1 lymph node in my neck. There is another type of DLBC lymphoma called primary mediastinal B-cell lymphoma (PMBCL) that stays in the mediastinal region and never spreads either. I think what I have had most of these years is perhaps an odd mixture of the two. Originally, it was far more in my lungs than outside of it. Now, it’s more centered in my chest, which is why my diagnosis was changed last year from DLBC to PMBCL.
Regardless, it hardly matters. They are all forms of DLBC lymphoma, just in different spots, so the treatment is largely the same across PPL, PMBCL, and DLBC. While surgery is not a standard method of treatment for lymphoma, it is sometimes used in PPL when the lymphoma is confined to the lungs. However, DLBC PPL is so rare, there is no established standard of treatment aside from the DLBC treatments with generally work very well. The prognoses for DLBC and PPL are very similar.
It does make me wonder a little. Would surgery have made any difference for me? Who knows, but probably not, as the lymphoma was outside of my lungs by the time of diagnosis. Surgery wouldn’t have gotten it all. In addition, I would have lost my whole left lung. By doing chemo and radiation instead, my left lung still functions, howbeit, a bit subpar.
There were other interesting facts I ran across. The majority of PPL lymphomas are called a MALT B-cell lymphoma, an indolent type that does not grow quickly. There has been some speculation by the medical field that the MALT and the DLBC types sometimes co-exist in the lungs. That is actually fairly common in lymphoma: an indolent type underneath masked by the aggressive type taking over the body. Often, the indolent type is not discovered until the aggressive type has been largely eradicated via chemo.
Another speculation is that the PPL lymphomas sometimes start out as a MALT lymphoma and then mutate into the much more aggressive DLBC. That is also quite common in indolent lymphomas. Both are speculations because DLBC PPL is too rare to study in anything more than individual patients. Each patient is a statistic unto himself, so any kind of generalities are impossible to prove. I enjoyed going down the bunny trails, though.
I recently joined a new cancer forum. This one has a forum specifically for stem cell transplant patients! Yes!! This forum is more active than some others I’ve been on. Forums used to be quite popular online until social media such as Facebook came along. They have supplanted many of the forums, especially for the younger crowd. I’ve been reading other’s stories on the stem cell transplant forum and count myself very, very blessed!
I thought I went through purgatory? I did, but only for about 4 months. The tales I’ve been reading remind me how bad it could have been and wasn’t. I remember Dr. Rybka telling me during all my transplant complications that it could have been a lot worse. At the time, I couldn’t imagine how. After reading some of the stories, I can now imagine it. I’m incredibly grateful for where I am.
Just a few examples. I thought it was terrible that I was in the hospital for a total of 9 weeks during a 3-month period. When someone else posted that they were in the hospital for about 18 months out of a 2-year stretch, I decided I had it pretty good! Reading her posts about the fight to gain back strength and health since her transplant has been inspiring. If she can fight so hard to make progress, I can to, and I’m not nearly as sick as she is! Another transplant survivor has been fighting a rare T-cell lymphoma for 10 years and counting with about twice the drugs and treatments I’ve had. He had a transplant and his cancer is gone, but his GVHD is so bad he’s on and off anywhere from 30-90 mgs prednisone. Thanks to the prednisone, he has osteoporosis, cataracts, steroid-induced diabetes, etc. etc.
One thing I really love about the transplant forum is the sense of humor that bleeds through nearly every post. As my friend Danielle tells me, “Sometimes, it’s either laugh or cry, so you may as well laugh!” The humor is often sarcastic, tongue-in-cheek, sometimes a bit gallows humor, the kind of humor I like. Another thing that impresses me is how all of us are grateful for life. We all laugh and love and embrace life and find rich meaning, no matter how much suffering there can be sometimes. While cancer is a result of evil in this sinful world, I also know that God brings redemption in the middle of evil, and sometimes we find precious “treasures of darkness” and “hidden riches” in the most painful of places. I know I have. God is good. Always.
Below are some pertinent quotes from the forums that struck me, some because they are inspirational, others because they sum up the transplant experience quite well:
- If cancer is the “beast”, then the transplanted stem cells are the “monster” that is released to kill the beast. I consider transplant to be the “new cancer” as far as the co-morbidities that it produces and the serious side effects of the drugs used to control GVHD.
- Another complexity is that each transplant is an isolated research experiment which combines two unique DNAs so as to study their functional compatibility. It will never be repeated and has only certain applicability to other transplants. We are now officially at war with ourselves, so occasional intervention is necessary by the united nations of the medical world. Being a chimera exacts its toll on us. Being tough by nature is our counter to that.
- I subscribe to the “hope for the best, plan for the worst” school of illness management. (Exactly! Always!)
- As my hematologist says, “If we knew what we were doing, it wouldn’t be called research!” (This one amused me.)
- I’m going to do what I love doing, when I can until I can’t, and dodge bullets in the meanwhile.
- You must be alive to have complaints. (I like this one!)
- We all know that life is not fair. Good! If life was fair, we would all have cancer. I can live with unfair.
God is still good.