Hello my lovelies! I’m alive! I haven’t felt much like writing lately, but I wanted to give a quick update. I had my transplant on June 3rd. My brother David was my donor. I spent most of June in the hospital due to fevers and graft vs. host disease. In short, lots of puking, very little eating, and upper and lower endoscopes with biopsies, plus a little extra chemo and lots of steroids. I’m super glad to be out of the hospital. Once out, I had to go to the clinic every day and wear a portable pump with anti-rejection drugs. I called it Betty Ford, since it was my own personal drug clinic. Now I’m on the Prograf orally, so I got rid of the pump for about a week, but now I’m back on the pump for steroids because I have graft vs. host again, this time in the form of a rash. (Yet another fun biopsy.) Hopefully I’ll go to oral steroids next week. I’m at day 57. At day 100 I’ll do tests to see what the cancer is up to, but so far I’m okay. The mass in my neck has gone down and the GVHD means the graft cells are growing and doing what they are supposed to do. For now, I’m at clinic every other day. Hopefully things will slow down in 40 days, or maybe even speed up if I’m allowed to go in public then! The boredom, exhaustion, and isolation are the hardest parts. But I’m hanging in there and working on getting stronger every day. Much love and thanks for the many prayers and positive energy! You guys have been with me from the beginning of this incredibly long journey and I’m confident you’ll be there to help me celebrate the end of it!
Hello my lovelies!
Well, we’ve had to back up and punt. Did I just use a sports metaphor? Why yes, yes I did. Anyway…I was approved by the pulmonary doctor for transplant and everything was moving forward. David had all his donor testing done and was cleared, and I did all my usual pre-transplant stuff. I had already done my echo, EKG, labs, pft, and bone marrow biopsy, and the last thing was a pet scan. Bump. The scan showed progression of the disease in my right neck and shoulder area, as well as my right hip bone. So now we have to do some more chemo before we can go to transplant. The masses need to be as small as possible in order to give my brother’s immune system the best chance possible of eating all my cancer spots.
Today I’m at Northside for my first round of GVD therapy. Three lovely drugs that have all the usual side effects. So the pink hair will soon be exiting this mortal world. But that’s okay as long as I stick around! I’ll probably do two rounds of this chemo and then go straight to transplant, which will put it in June. So that’s where we are for now. A few speed bumps may slow me down, but I’ll still get there in the end, God willing and the creek don’t rise! 😉
Hello dear village! It has been a while since I’ve updated, and a lot has happened recently.
First of all, we finally got the blood tests back and now have confirmation that my brother David will be my stem cell donor. I’m so thankful that both of my brothers were more than willing to brave the needles for me!
So last Monday I went in for my pulmonary function test. It was the final day of my steroid taper (yay!), and I thought I did a pretty good job. But then on Tuesday I got a call from my nurse coordinator, and it turns out I didn’t pass the test. I did okay on the three areas that I could control, but I didn’t do so well on the part where they measured how well my lungs oxygenate my blood. The magic number to pass was 60, and I was at 38. So we still have some work to do. Unfortunately, this means that everything is on hold again until I can be cleared by pulmonary. So the plan now is to take the PFT again in a couple of weeks, and if I can get up into the 40s, I’ll be evaluated by the BMT unit’s pulmonologist. They will decide if we can take the chance and go ahead with the transplant, or if we need to wait a while longer and heal further. The good news is that the CT scan I did on the same day as the PFT looked pretty stable. The cancer spots are not growing super fast, so we’ve got a little time. I am starting to notice some Hodgkin-y symptoms returning, but they are nothing like what they were at the beginning of this whole process. The most difficult thing to deal with is the fatigue. But I think that’s also a result of all the grueling treatments I’ve put my body through for the past two years. TWO YEARS. Plus the two years it took us to find a diagnosis. At times it’s been really hard not to let this cancer just overtake my whole life, particularly since I can’t work anymore or physically do so many of the things I used to do. But the important thing to remember is that I’m still here, and in two more years, I’ll still be here. I’m not giving up, and I know you guys will not give up on me either. So for now, please pray that my lungs continue to heal, so that I can do this transplant already! And please pray for David, that his stem cells will love me and want to be a part of me and not attack me. 🙂
On a side note, I had to have a surgical procedure this past Thursday. A few weeks ago I got a sinus infection and an ear infection, and after a round of very strong antibiotics, the infections had cleared up, but my right ear was still stuffy and muffled. I couldn’t hear out of it at all. My oncologist sent me to the ENT, who gave me two possible solutions: 1) a round of steroids, or 2) a tube in my ear. I pretty much shouted HELL NO to the steroid option, so #2 it was. I tried to get him to just do it right then and there in the office, but apparently it’s one of those things that has to be done at the hospital under anesthesia. He was unmoved by my protestation that if I could endure multiple breast and bone marrow biopsies, I was already a total badass and cutting a hole in my ear would be no big deal. I was even ready to offer my nurse Mary Ann’s services in cleaning up the blood for him. No go. So on Thursday morning Mary Ann took me to the Barrett surgery center at Wellstar Cobb and I patiently waited with all the other little kids to get a hole punched in my ear. We ended up being there pretty much all day, and I was awfully hangry by the time we got out of there, but overall the procedure went well. My ear doing better already. I can hear again, though I can tell there’s still some fluid that needs to drain. I’ll go back for my post-op appointment next week.
So those are the highlights. I’ll let you guys know how the next pulmonary function test goes. Fingers crossed! Love and light to you all.
Hello my lovelies! I know many of you have been asking for updates…and now I finally have one! Today I saw my transplant doctor and we went over the game plan for my next stem cell transplant.
I will be doing an allogeneic (outside donor) transplant. My donor will be one of my brothers. Both of them are partial matches for me, which means that roughly half of their HLA (protein markers) are identical to mine. This means that our body tissues have some protein markers in common, but not all. The closer to a 100% match, the lower the risk of graft versus host disease. GVHD is when the donor’s cells attack the recipient’s cells.
Thankfully, I am at one of the best blood and marrow transplant centers in the country. They do haploidentical (partial match) transplants every day. They have worked out a drug regimen which greatly reduces the risk of GVHD while still enabling the donor’s immune system to fight my cancer. I will probably still have some issues with GVHD, but we won’t really know how bad it will be or where in my body it will be until we do the transplant.
However, this transplant is really the only possibility for an actual cure of my disease. My lymphoma has relapsed after every chemotherapy treatment I’ve done. It did respond to the Opdivo, though not completely. But that of course came at the cost of my lung function. Which leads me to my next topic…
When will we do this transplant? Well, first I have to get off the steroids. I met with the pharmacist and I am going to taper the prednisone down over the next four weeks. This is a much quicker taper than the pulmonologist would like, but we have more important oncological matters to worry about. If my lungs flare up, we’ll slow the taper down. But I’ve been doing pretty well lately, so I’m hoping all will go smoothly. In the meantime, we’ll be doing some testing on my brothers’ blood to see which one is a better match. I will also start my workup, which includes scans, EKG, echo, and bone marrow biopsy. Once I’m off the steroids, I’ll do the pulmonary function test. If I pass everything, we’ll move forward. So we’re probably looking at mid-March for transplant time.
After the transplant, I’ll spend a month going to the clinic every day, then it will go down to every other day. I’ll be on immunosuppressants for about six months, and I’ll have to stay away from people. It’ll be very similar to what I went through during the last transplant, but this time there will be less chemo and more GVHD.
So those are the basics. I’m incredibly grateful for yet another opportunity at life and am trusting that God will see me through these next few months of hardship. I know this transplant will not be easy, and I know there is no guarantee that it will cure me, but it is my best chance right now. I just have to lean on Him, and not my own understanding, which is, of course, easier said than done. But ready or not, here we go!
I made it home from the hospital in one piece after two weeks, though I didn’t escape entirely unscathed. I had a fun little bout with cdiff as a result of all the antibiotics I took. I’ll spare you the details of cdiff and just let you google it. It’s as fun as it sounds. Thankfully I’m better now.
My lungs, on the other hand, are still being a pain in the butt. Or a pain in the chest. I’m still coughing, still have inflammation, still on lots of prednisone for the pneumonitis. I’ll see the pulmonary doctor again next week, but my last chest ct looked pretty much the same. It’s just going to take a while to get my lungs back to normal. But these things happen. Chemotherapy has side effects. And unfortunately for me, many of the treatments I do to help save my life try to kill me sometimes. It’s always a game of risk versus benefit. The Opdivo and the radiation helped with the lymphoma, but not so much with the lungs. Such is life.
My stem cell transplant was supposed to be January 6th, but of course that’s all been put on hold. I’ll see the transplant doctor in February and we’ll make a plan then. He still wants to go forward with a transplant, as it’s the only way to really get rid of the lymphoma, but he wants to make sure my body can withstand the associated risks before we do it. My last PET scan showed that there is still some disease activity, but not so much that we can’t wait a little while if we need to.
So that’s where we are right now. Playing the waiting game! Getting fluids to help maintain me and getting puffy and spotty from all the steroids. Fun times! I’ll be sure to update when I have a plan for transplant. Love you all!
Hello all! I am still here! My lungs have tried to kill me recently, but I have fought valiantly and I believe I can safely say I will come out the victor in this battle.
Last Monday (November 30th), my blood pressure was low and my temp and heart rate were high at radiation. So after treatment, they sent me over to my oncologist to get some fluids. They evaluated me there, and my fever had gone up to 102, plus my pulse oxygen was low, and my cough from a few weeks ago had come back…all in all I was in pretty sad shape. So they admitted me. Of course I was not happy, but it ended up being the best thing for me since I kind of went downhill from there. I kept spiking fevers of 104, and my heart rate and blood pressure were all over the place.
After lots of tests and a crap ton of antibiotics, all the doctors pretty much agreed that I had pneumonitis (inflammation) in my lungs from all the chemo, particularly the Opdivo (most recent treatment). All cultures came back negative for infection. Eventually, we got the fevers under control and got me on steroids, lots of oxygen, and breathing treatments. I’m also on Lasix to help draw fluid out of my lungs, but I’ve stepped down on that, thank God. Lasix sucks. It’s like being an 85 year old man with a giant prostate continually pushing on a full, leaky bladder. So I’ve got a catheter in. That’s fun too.
Today I was able to wean down the oxygen a bit more, though not enough to go home on yet. I was also able to get out of the bed and do some walking, which was nice. Visitors are okay in small doses, of course as long as you haven’t been around anyone sick. My platelets are low, but that’s manageable. So that’s where things are right now. I’m slowly but steadily improving, and once I get the meds and oxygen weaned to a dose that’s doable at home, I’ll go home. This does mean that the transplant is on hold for right now, but that can’t be helped. I’ve got to get my lungs healthy again first, so that is the first order of business.
Thank you so much for all the calls and texts and visits and goodies and love. You have all taken such good care of me and my family this past week and a half. Hopefully I will be home soon, but until then, it’s an oxygen party at Wellstar Cobb! I’ve got the Jello covered – someone else bring the liquor! (Just kidding, Mom and Dad. I’m totally asleep by 11, except for those 3 am breathing treatments.)
May the peace and longing of Advent be with you all as we await the coming of our Lord!
Well, I had a chest x-ray and it turns out that the cold I couldn’t shake was pneumonia. So now I’m on all sorts of meds that are actually helping. My cough is much better and I’ve been able to eat the past couple of days. My blood pressure is still pretty low, so I get dizzy a lot when I stand or walk, but I’m sure that will get better as I continue to get fluids and recuperate.
Tomorrow after radiation I’ll get another chest x-ray just to check on things. There’s also a possibility that I could have inflammatory pneumonitis from all the chemo meds and radiation, so I’m on steroids to help combat that. Thankfully I haven’t gained any weight so far. Last time I was on steroids I blew up like a pale puffy balloon.
I’m nearing the end of my third week of radiation. I’ll finish up the first week of December, and then I’ll immediately start all the rounds of testing for my next transplant. Depending on the donor’s schedule, we’re looking at the first week of January for transplant. I’ll know more once my nurse coordinator hears back from the donor.
I feel like I’ve been running a marathon for the past few years. All this treatment is exhausting, and it makes it difficult to be the parent and person I want to be. But I will continue to fight, even if I’m trudging one step at a time toward complete healing. Thank you all for fighting alongside me. Much love.