I haven’t written a medical update in a long time. I know I shared the details in My Mega Post, but I haven’t kept everyone informed after that. To be honest, after his seizure in February and the “your husband’s heart might collapse” scare in the beginning of April, I was running on empty and not feeling very eager to communicate because I didn’t feel very inspired about life in general, let alone our family’s situation. I mean, I had my moments, but they just weren’t woven together in my mind for me to later sit down and write about.
However, y’all deserve an update! So much has changed. First of all, he has not had seizures since his seizure in February, and his follow-up echocardiograms show his heart is without substantial surrounding fluid anymore. High five!
Our new issue seems to be a stubborn infection. He developed a case of cellulitis in April, while we were visiting family in Illinois and making plans for our move. The hot, red, burning rash on the top of his right foot seemed to develop over night and within days it left Dan unable to walk due to intense pain. At an urgent care clinic in Bloomington, IL, a doctor suspected he had developed athlete’s foot and hypothesized that a tiny crack between his toes might have enabled the infection to take hold. And as a side note, the crack would have easily developed due to his chronic edema of the feet–which is basically a side effect of cancer. With a chronically diseased body, treated regularly with chemo like Dan’s, these things happen. It is just the new norm. Dan was prescribed an antibiotic and fungal cream, and managed the rest of our trip with the use of my mother’s cane. By the time we had to travel back to Oregon, wheelchair use and additional help at the airports was imperative. (We will never go through life again not fully understanding and empathizing the challenge of traveling as a disabled individual, especially a family with a young child / disabled individual / hot mess mother+wifey).
In Portland, Dr. Duffy was frustrated to hear Dan was dealing with such a painful case of cellulitis and delayed his next round of chemo to let his body focus on healing the infection. Dan’s last chemo infusion in Portland was Friday, May 27th. That last day, I felt desperately unsure about leaving the white room full of windows on the 2nd floor of the east pavilion at St. Vincent’s. I suspected Dan did as well. Was this big change the right thing? This was our safe place amid the storm, where Dan had the best treatment and care we could have ever imagined. And that treatment became as normal as waking and sleeping, going to work, coming home.
For that reason, Dan felt comforted by his first chemotherapy in Illinois. While everything was new and unfamiliar, sitting quietly in his chair and getting his infusion was an anchor. But before Dan could have his first chemo in Illinois, his new oncologist, Dr. Kumar, admitted him to the ER at OSF when Dan’s cellulitis returned and began spreading up his leg. I have never been so grateful for my husband to be admitted to a hospital. To have the infection spread up his leg terrified me. I had fears of his cellulitis spreading, damaging muscle or tissue, or entering his bloodstream. I think my relief and gratitude kept me from feeling completely overwhelmed to have my husband hospitalized only six days after arriving in Illinois (to an empty house, without a car, and a trio of discombobulated human/pet children…) And now, looking back on it, I can also see how having Dan in the hospital maybe felt a little cozy for me? I had to learn the route, the parking situations, and the general navigation of the new hospital, as well as sniff out the nurse staff and coffee/food selection–but really, for tough work, isn’t it a comfort to get that established right off the bat?
At OSF, Dan watched TV and napped off and on (the poor guy didn’t have a new phone yet, post-move) while bags of antibiotics were continually pumped through his bloodstream. I couldn’t believe how much antibiotics he had. After three days, he was released and continued oral antibiotics for a few more days. Dan had his first chemo June 22nd and returned to his chemo chair in the middle of July, just in time to notice the cellulitis reappearing. He did another round of oral antibiotics and the infection cleared up in time for chemotherapy August 3rd. A week following, the infection was back. When he went in again last week, we discussed options with Dr. Kumar. I couldn’t help but feel so frustrated! Of course, I absolutely don’t love the idea of the long-term implications of his body getting pumped with antibiotics, but I also don’t want to change the course of treatment for his cancer. It’s a catch-22. And you have to focus on the greater beast.
At this point, he has been steadily treating the cancer with low-dose pemetrexed (alimta) for 17 months. This is kind of incredible, because, if you have been following along with me for a while and might recall, we only really expected to see it work for 5-8 months. (Wow, right?) So this is what we are sticking with. Now that we have established care with Dr. Kumar, our treatment plan has only changed in terms of evaluation. Dan will no longer have CT and MRI imaging done as frequently as we have in the past. For one major reason, he is no longer participating in a clinical trial, and then the minor reason of, you know, reducing the amount of radiation he is exposed to. (And I don’t know…When I’ve had a drink or two, I find this laughable. His bodacious body has seen so much radiation over the last two years, what could possible be a little more here and there?) That being said, Dan had his first CT and MRI for Dr. Kumar this month. All reports show NO CHANGE compared to his scans in Oregon, so his cancer remains COMPLETELY STABLE. (FYI –this is not remission. This means that all of the tumors consistently appear to be necrotic tissue and no new tumors have developed. For it to be remission, this would have to be the case without the use of medicine/treatment. I just like to clarify because often people approach me and praise that he is in remission. Hm. But also maybe those people don’t read this blog. Something to consider.) Anyway, this confirms that Dr. Kumar has seen no reason to alter the treatment with pemetrexed, which we are on board with at this point. He did propose that Dan take a small, daily dose of preventative antibiotic moving forward, however, to possibly keep the cellulitis at bay. We agreed. Now we wait and see…
To speak to the whole character of Dan’s overall health, I have to say that he is doing incredibly well. At the appointment last week, I felt that Dr. Kumar sensed my exasperation with the ongoing infection, and he was very kind and optimistic to point out (at several occasions in the meeting) that Dan is really doing exceptionally well. Dan is also adapting to a completely new life with completely admirable ease. (I just don’t know what Zen gene he has but I WANT IT.) With my gentle coaxing and nesting, he is finding his fit into our new home, daily routines, and life in Illinois. And I am positive that there has been no greater medicine than what he is getting these days; time with loved ones–his grandmother, cousin, brother, and parents, as well as getting to know my family better, and developing new friendships. He is spending time with his passions–reading for fun, buying records and listening to more music than ever, drafting landscape designs for friends, drinking coffee and trying new beers, exploring the world of Mexican cuisine in central Illinois in the quest for the ultimate burrito, cooking and baking, having a closer, more in-depth daily routine with Raine, and letting me shower him with love and kisses and hugs and squeezes and compliments. ;)
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