I’ve been waiting for an opportune moment to share a big picture summary of chemotherapy and a stem cell transplant. Today is that day. Sit back, grab a beverage, and I hope you enjoy this update with insights on recovering from a long battle.
Today, March 31st, is a day I’ve been dreading. I am going to have the tumor in my neck removed. This is the tumor that first popped up June 2014, initiating all this medical intervention due to a diagnosis of Stage 2 Burkitt’s Lymphoma. This is my second time to have Burkitt’s, the first being in 2008.
The surgery shouldn’t be too big of a deal as they don’t go through any large muscle masses or have to dig deep. The surgeon said it should be a simple incision on the right side of the neck, isolate the tumor which is lying against the jugular vein, then snip snip! Sounds minor and all until it is YOUR neck. He did say if they nick the jugular vein and can’t stop the bleeding, they would “simply” tie off the vein, reminding me I have another jugular vein on the other side of the neck and it would be sufficient. Ugh!
Oh boy. I suppose the dread, which isn’t overwhelming or anything, comes from recognizing the potential for a setback. Surgery, hospitalization, incision to the neck, pain, limited movement, possibility of a major vessel being tied off (small chance), and other such nifty realities swirl in the back of my thoughts, usually late at night when I can’t sleep, and force me to play mental games to hold onto sanity. Even though this is anticipated as a focused event, it is a setback in my recovery. It will slow me down, require me to sit back and not do much, and that is all fine and dandy. I’m tired though, of the whole medical problem lifestyle, and want to move back into normal productivity for my life. This surgery represents nothing more than a speed bump in my recovery, but I’d rather keep gaining momentum than slow down.
Recovery from intensive long term chemotherapy and a stem cell transplant has been hard. The challenge has been largely mental, but it stems from physical inability and unpleasant medical problems. I think the single hardest aspect for me has been the longevity of the entire regimen and the patience required to essentially allow natural healing to occur. I find it hard to “do nothing.” It is even harder to do nothing when I don’t feel well enough to do anything. Strange to word it like that, but I suppose that is the truth. Then there are the frequent visits to the doctors, including such fun events as getting my Tri-flow catheter removed.
I started chemo July 2nd last year, and was pumped full of increasing strong doses of poisons (DA EPOCH +R, then RICE regimen #2) until it culminated with the powerful “BEAM” chemotherapy that is part of the stem cell transplant. The BEAM chemo was literal hell to be honest and I don’t want to do it again. I documented all of this on my youtube video channel, be sure to watch the videos starting with the first one titled “I have lymphoma again (dang it).” I showed what setbacks looked like, chemo, and going through a stem cell transplant. I paid careful attention to document the stem cell build up and all that goes into that exceptional procedure.
I was told the first 90 days to not do much but rest. Evidently, the first 90 days post transplant is a critical time frame. The initial month or so was mostly laying around. Much activity resulted in shortness of breath and extreme fatigue. By January, was able to mill about the house a bit and not get short of breath unless I exerted myself. I was told to rest and do nothing, just rest. Avoid crowds, sick people, don’t go places, and so forth. For the most part, that was easy to do for a while. The cold winter we had, with nasty weather conditions, made it easier to stay trapped inside the house.
By February and early March, my attitude was beginning to stinketh a bit on some days. I was a prisoner in my own home. Grateful on one hand for all the wonderful blessings and a nice home to be trapped in. Increasingly frustrated on the other hand because of my limitations. The cold weather with frequent ice storms and snow didn’t help. North Texas had a rough 8 weeks or so and it didn’t help that I had trouble doing much and was tormented with thoughts that weren’t the best. It is wearisome to spend 9 months (July through March) just sick, sick, and sicker. It was wearing on my mental state. I fought to stay upbeat and think I did an ok job overall, but I did have some down moments. As time wore on, the mental and emotional battle intensified.
My 90 days were up mid February and I slowly started reintegrating with the world at large. By this, I mean grocery stores at any hour, church, things of that nature. I’m at higher risk for infection due to a wiped out bone marrow so I’ve been really careful. For the most part, I’ve been very lucky to not get sick and infected. I did do one ER visit with abdominal pain and swelling. It was scary for a moment, but turned out to be some benign infection or possibly food poisoning. I have had random mild fevers and chills, probably my immune system having to “relearn” all the common germs it was forced to forget. Keep in mind, a stem cell transplant resets the immune system completely. I lost all immunity against common germs, including my childhood vaccinations. I have to restart the vaccine series November 2015 of all child hood immunizations. Oh boy.
The last few weeks of late March have been warming outside. This last week in particular has seen beautiful weather in North Texas. I decided instead of pushing long walks as a type of recovery (and there have been a few 3 mile walks), my main goal would be stamina and endurance doing things around the house. I put my N95 respirator on and work in the yard and things of that nature. My goal was to be able to put in a full days work. I have a long way to go, but it has finally begun.
I got into the yard work heavy last Saturday. I was surprised at how weak I really was. Mentally I knew it to be true, but to experience the limitation physically was eye opening. I could work in short bursts, about 20-30 minutes at a time. Then it was sit down under the tree and enjoy the weather. I had to split my time about 50/50 on work and rest. Each time I sat down, I was short of breath, tired deep in my bones, and wasn’t sure I would continue working. I had to really make a hard determination the first day to keep getting up and trying to do more once I had rested. My body said “no,” but my brain and heart said “just a little more, go easy.”
I have to say, I’m glad I persisted and pushed through the initial boundary of limitations. I worked 3 days straight in the yard doing various projects. By day number three, which was yesterday, I actually was able to go about 2 hours of putzing around slowly. That required about a 1.5 hour recharge time. But hey, it was progress! Felt good to be outside, my attitude has really improved.
Recovering from such a consuming medical procedure has had its odd moments. I was noticing the sun on my skin and realized my skin was returning to a more normal appearance. I had that paper thin look like an elderly man for the longest time last year due to intensive chemo and the stem cell transplant. I just stared at my skin for about 5 minutes this weekend marveling at the ability of the body to regenerate. Such a minor thing, but it meant a lot to me to “feel” like I would look normal. Normal skin, rejoice!
My hair is coming back in with a vengeance. The body hair is returning surprisingly dark, like I was 30 years old. I don’t expect it to remain that way long term, but kind of fun to see “young” hair again. My hair on my beard is about normal: salt and pepper look. The hair on my head, what can I say, it is coming back in a silver white look. It isn’t long yet. Last week after showering, I didn’t do much to “style” my short hair. Styling these days consists of rubbing the short stubbs with my hand to influence it to lay one way or another, rather simple. I forgot. Looked in the mirror a few hours earlier and I had curls forming! Yes, this guy who has had very straight hair had curls popping up. After chemo in 2008 for the same cancer, my hair came back mostly straight with a few soft curls if allowed to grow long enough. Now it is signaling it is curling quickly and coming back almost white. Go figure.
My long term disability insurance is requiring me to file for social security disability. Not sure I understand why except they can charge this to the tax payer instead of paying it themselves from my private policy I’ve paid into for most of my life. Not happy about it, but what can I do. I file with the government or lose all LTD payments. I got my paper from Austin saying I have 10 days to call them for an interview. I don’t know how to be interviewed for “disability.” Unchartered territory for me. I mean, I am disabled in that I can do much more than about 2 hours of something before having to take a full break and rest for another 1 to 2 hours. I fall asleep easily, catch infections easily, have various sudden gastrointestinal maladies hit (and is it ever a problem, something I don’t say much about), and find I don’t focus well right now. I suppose the chemo is still washing out of the body and the effects persist for a while.
What does one say to the people in Austin who need to be convinced I’m disabled? Are they going to say I need to work at a desk job somewhere? Do they do that kind of thing? Or will they recognize where I am at in life and in a holding pattern of healing to return to my regular position in the ICU working nights, 12 hour shifts? I’ll just tell them the truth, but I don’t know how this “game” plays out. I guess there is this nagging anxiety in the back of my heart that says they might declare I’m not temporarily disabled and I’ll lose all support financially. I doubt that will happen as I don’t think they are in the business to undermine legitimate people and will recognize a standard stem cell recovery time is 6 months minimum to about a year maximum. I’m right on track. Hate this stuff, but I suppose it is a necessary evil.
I am thankful for all the blessings I do have. I have so many and have been given yet one more chance to live another day on this side of eternity with my family and loved ones. I’m blessed with a wonderful immediate family, extended family, and in-laws. I have a God who loves me and another chance at life. So much to be grateful for!
I got to visit my mom and stepdad in Ruidoso, NM last week. That is about a 9 hour drive to the mountains. How would I do at that altitude? How would I do with such a long drive? Will I get sick? I’m not near a hospital in the mountains, is this wise? Such were the thoughts floating in my head. We had a great time and everything went well, except for a few nights of mild low grade fevers and some deep chills. My immune system learning to fight!
Life happens in the midst of cancer. I turned 50 years old September of 2014. We celebrated with a nice meal or three and family and friends gathered to encourage us all. I’ll share a few pics with you right quick:
Our 2003 minivan has finally bit the dust in a big way. Kept it going for years, nice to have no car payment. But reliability is important right now. Our other vehicle is 10 years old and has had some lay downs, stranding me on the side of the road in the last year. The van was starting to do the same. We have to have a reliable vehicle. Through the generosity of others and God’s grace, we got our hands on a used Honda Civic. Good price, low mileage, and the best overall deal one could hope for. The refrigerator is starting to act up a little and the front panel on the left is rusting out quickly. It’s days are limited, but I think that will be a 2016 or later project. The bread machine died after many years (really sad about that one!), so I turned to the oven to bake bread the old fashioned way. Now the oven burned out and I’m on a project to fix it. I think I can replace the element. I can’t bake bread right now, oh the sorrow. I snicker as I type this, realizing I don’t have much to complain about, do I?
Janice and I went to Houston for one night to support some friends. John and Lindsey joined the Burkitt’s Lymphoma Society group in 2014. John was battling Burkitts and was only a few weeks behind me on the schedule to get a stem cell transplant. We messaged back and forth quite a bit as I shared my experience with them. Helped them to better know what was coming his way. They followed my videos and we talked a bit.
John was not able to reach the point of receiving his stem cell transplant due to a variety of reasons. He is now on hospice as of a few days ago. He had proposed to Lindsey a while back; they wanted to be married. Lindsey put a notice on the internet for anyone to video their quick wedding at MD Anderson. The outpouring was stunning. People are so kind and generous. They ended up with a wedding dress, cake, photographer, and news coverage to boot. It all came together in one day and was beautiful. All at the generosity of people they don’t know. Brings me to tears every time.
Janice and I made the journey to support them and share in their moment of celebration. John is only the second person I’ve ever met in person with Burkitt’s Lymphoma.
Before I sign off, I’ll leave you with this image of a worthless rotten no-good-for-nothing cat, “Callie,” who has a severe shoe addiction (serious). She finds a pair of shoes on the floor, and she will straddle them, lay on them, slide her paws into them, and if she is really tickled, will stick her face fully down inside the shoes to breath the wonderful smells.
Well, I need to head out to the hospital and get ready for the surgery. They just called to say they want me earlier than expected today. I’ll video and document the surgery day as best as I’m allowed. I’ll do a few short written posts on here to keep you all updated as the next 24 hours progresses. The video will come later in the week when I feel up to it. Thank you for all the prayers, support, and and love.