Rollercoaster Journeys

The misadventures of a young widow.


February 2010

Stay Positive!

Another post from the original blog I created while Chris was recovering from his bone marrow transplant.

Well, day 100 has come and is almost gone and Chris is still kicking furiously! I admit I had my doubts he would be here to see this day come but his stubborn conviction worked in his favor and, thankfully, proved me wrong. When he went through the first transplant, his treatment team, friends, family, and even he, himself, were both surprised and impressed by how well his system responded to his new stem cells. While he did experience bad days, they were only a few, and mostly associated with the “nasty” chemo they gave him just prior to the transplant. He regained his energy, stamina, weight, and immune system fairly quickly and his recovery was fairly smooth. Within just a couple of months of his transplant, he had made arrangements to return to work as a chef at his old restaurant and life was looking bright and hopeful. Then the bottom fell out.

On July 28, 2009, while I was at work, I received a phone call from one of his doctors. Chris didn’t answer his phone that morning, so with a sense of urgency, the doctor called me on my cell. I ignored the first two calls, but decided to answer the third, reasoning that the caller was pretty determined. Unfortunately, I was correct.

For all the adulations about Chris’s post-transplant progress, it was all in vain. 68 days post-transplant, his AML had returned and the doctors wanted him to come in that day for confirmatory tests. I refused to be the one to break the news to him and instead, vaguely gave him the impression that the blood tests were messed up and needed to be repeated. I took him to the hospital so he wouldn’t be alone when they delivered the inevitable. Those few hours with him while they ran the tests was the longest and most exhausting exercise in self-control I think I have ever endured. When the doctor came in and gave us the news, all that pent up energy came pouring out of my tear ducts while he sat there and quietly took it in. He calmly asked, “OK, so what do we do now?”

That one day, that one phone call, changed something inside me. For the first time since his diagnosis, I experienced the feeling of hopelessness. Prior to his relapse, I forced myself to imagine what life would be like without my best friend in it. I kept telling myself I had to be ready to deal with any outcome possible just so I wouldn’t be completely thrown for a loop if he lost this battle; however, I always thought he would make it. This relapse forced me to face the reality that a fairytale ending might not be in the cards for him, and for lack of a more articulate descriptor-it sucked!

Since his BMT, I feel like I’ve been holding my breath, waiting
for the other shoe to drop. This transplant was a whole different ball game compared to his first one. Since the transplanted cells came from a matched, unrelated donor (instead of from himself as with the first one), patients undergoing this type of treatment, recovery is knowingly fraught with complication, uncomfortable and annoying side-effects, fatigue, and just overall feeling like crap for quite some time. His progress after this transplant was favorable (relatively speaking), and with the exception of a few bumps in the road, he handled it pretty well.

He is definitely not out of the woods and still has a long way to go, but yesterday was definitely another win for him. At this point, the only thing friends, family, and we can do is continue channeling positive energy toward the ultimate goal: him responding favorably to the transplant and overcoming this disease.


Just another Day in the Life…

Another post from the original blog created while Chris was recovering from his bone marrow transplant.

Chris is 96 days out from his BMT and had his Day 100 clinic appointment and bone marrow biopsy. I was able to go with him without the guilt of taking a day off. Mother Earth was kind enough to drop about a foot of snow on central VA this past weekend and I had the best kind of day off, a snow day. Chris rocked today by offering to dig the car out of the snowball trapping it.

While waiting to see the doc, we ran into another couple who were two rooms down from us in the Acute Oncology Unit back in the fall of 2008. Just like us, they were there post-diagnosis and the wife and I spent many an hour outside chain-smoking, comparing notes, and crying together. It was great to see they were still going strong after all this time.

Since I’ve been back on a regular M-F, 7am-4pm work schedule, Chris’s mom and my dad have been taking him in for all his clinic visits recently, which means that’s one element of my old routine that’s kind of been eliminated and replaced with work-related activities. Talking with that particular couple today reminded me of the social reality of frequenting the clinic.

When you enter into the world of the BMT Unit, you become part of a unique society; one that can only be understood by experiencing it firsthand, either as a patient or as a caregiver. Since the treatments of most blood/immune cancers require extensive care, specific routines, and HUGE lifestyle changes, you quickly become indoctrinated into this culture in which every conversation and activity you participate in revolves around the disease and its treatments. The main focus is on the various procedures, therapies, tests, patient progress/care, housing issues, and the innumerable amount of complications that come, not from the disease, but with the prospect of a cure. Given this, you find yourself having basically the same conversation repeatedly with other patients and their family members/friends who are acting as their caregivers. In some ways it’s comforting because the one thing that never changes is the topic of conversation and, through this, being reminded time and time again that you are not the only ones going through this ordeal.

I digress…back to the original focus of this entry: Chris’s appointment went well. The results of his chest scans and pulmonary function test came back with the expected outcome; some minor findings, but nothing that would be a cause for concern. For the first time since the very first, I got to sit with him during his bone marrow biopsy. This was definitely a better experience than the last time I got to witness someone using their body weight to bore a hole in his hip with a needle. He’s definitely gotten used to this procedure, as he didn’t look like he was going to punch the doctor, nor did he exact the death grip on the rails of the gurney. We joked around with the pathologist and the nurse the entire time and, while it was not what I would call a “pleasant experience,” it definitely did not fall in the category of “times I really should have escaped to the bathroom” (the first one absolutely falls in that category).

All in all, it’s been a fairly good day. Hopefully, with continued positive thought and energy, this trend will continue.

and so it begins…

This is the introductory post from a blog that I created to keep our family and friends updated on Chris’s condition as he was recovering from the bone marrow transplant.

Recently, an anonymous bone marrow donor offered my family the gift of a 2nd chance. Our journey began on November 6, 2008 when my husband was diagnosed with acute myeloid leukemia (AML). That was the moment we got on a rollercoaster with no specific track or end and since then, every ounce of our mental, emotional, and physical energy has gone toward winning this battle. We appreciate all the support, help, and positive energy family, friends, and even complete strangers have offered to us over these last 15 months. There is no doubt that, given the amount of love we have received, we are truly lucky people. We have an amazing support system, and without them, we would not have ever dreamed of making it this far.

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The misadventures of a young widow.


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