Rollercoaster Journeys

The misadventures of a young widow.


New City, New Excitement

Time’s Up

“The results of your bone marrow biopsy came back and they confirmed our fear that the leukemia is back.  I’m sorry bud.”

This was a huge blow to the three people present and an oppressive hush fell upon them.  Finally, a barely audible voice broke the silence, “Um, how long?”

“A few weeks, maybe a month; I’ve had a few guys make it a couple of months with a mild, oral chemotherapy we’ll put you on.”

He didn’t scream, burst into hysterics, or even sob.  He just sat on the exam table and stared at his feet dangling in his brown and grey Vans.  Without looking up he asked, “There’s nothing more?  What about infusing the last of the donor’s lymphocyte cells?”

“Unfortunately, it’s much more aggressive this time and the infusion won’t even make a dent in its progression.  There are no more options for a cure.  We can look into experimental treatments being researched in Europe.  It could give you a few more months…but you’d be in the hospital indefinitely.”

“He sniffled once and raised his head to meet the doctor’s gaze.  Calmly, and with an ever-so-slight grin on his face he replied, “Well, you guys did everything you could to help me beat this thing and I thank you for that.  I guess this just wasn’t my game.”

A little while later, after deciding quality of life won out over quantity, he sat across the hall in a private infusion room, cracking jokes with the staff as he signed his DNR order and discussed hospice care.  Once all the necessary paperwork was signed, a nurse accessed his Porta-cath for a series of transfusions.  He really didn’t want to waste any more time in the clinic, but he knew spending a few hours hooked up to the IV would buy him a few days of energized respite from agonizing fatigue.

He sat back in the familiar plastic recliner while plastic tubing pumped fluids into him for what would be the last time.  It seemed like everyone in the clinic stopped by to say hi (or goodbye), and he entertained them with his natural wit and charm.  The only evidence of his sadness was a text to his best friend Batman:

Dude, I got some bad news today…I’m in the clinic at the moment hence the text.  Don’t wanna talk on the phone with all these people around but I gotta tell someone other than Izzy. My AML came back with a vengeance.  My time is short…weeks to months.  Sorry to unload via text but I don’t wanna crack in front of strangers.

Within a few short hours of getting the heartbreaking news, his mother-in-law met the couple at the hospital, and they decided he would ride home with her to make plans for dinner while his wife took care of his meds.  While she embarked upon the great pharmacy-hunt to fill his numerous prescriptions of sizeable dosages, dinner plans proved to be much less complicated.  He quickly decided on pizza, figuring he’d take a risk and eat a greasy pie from the dive down the street he’d been craving for months.  As he called to place the carry-out order for a large extra pepperoni and cheese pizza, he embraced the reality that germs had now been replaced as his greatest mortal enemy.  Gone was the fear of the myriad dangerous pathogens that may or may not invade his system with potentially deadly results.  He knew his fate.  His calm demeanor and happiness over his upcoming meal indicated that he was either at peace with his new reality or in complete denial.

As they drove to pick up dinner, his mother-in-law was determined to focus on a positive but realistic approach with him over his imminent mortality.  Knowing he had spent the entire afternoon at the hospital discussing it, signing paperwork about it, etc., she didn’t dwell but knew she had to acknowledge the “white elephant in the room” somehow.  If there was any question about his state of acceptance (or lack thereof) about his terminal diagnosis, he definitely cleared it up when she asked how he was coping with his new reality.  With a calm repose, he replied simply, “All I have to do now is focus on making a few more awesome memories for Izzy with the time I have left.”


April Fools!

April 1, 2010 – I was sitting in an exam room at Virginia Commonwealth University’s bone marrow transplant clinic with my best friend and life partner, Chris, waiting for the doctor to tell him what I had known about for two excruciatingly long days. Three days before, he had gone in for a weekly checkup and his blood-work results indicated the need for a bone marrow biopsy. When I called the next day, the nurse gave me the comparison of both sets of blood-work drawn four hours apart the day before. If his initial results gave cause for worry, the second draw showed an exponential change in just four hours, making that worry turn to dread. The only way to say with 100% certainty that the leukemia had returned was to do a bone marrow biopsy…but the blood-work showed all-but conclusive evidence to support a relapse.

As a teacher, hearing this over the phone during my planning period at work was possibly the worst time and place to hear news like this. What made it intolerable was realizing that Chris didn’t know and I did and there was no way I was going to be the one to break the news. I didn’t have the answers I knew he’d need to hear and we had an appointment for the biopsy and a doctor’s visit in two days; that was the time to tell him. I had to hold my shit together until then. I had to keep the biggest secret of our relationship from him AND hold myself together for 48 long hours.

Two days later, relief washed over me when the doctor came in and explained the suspicion that yet another transplant had failed to keep his leukemia at bay. I was terrified of the potential diagnosis, but at least it was out in the open. Since we wouldn’t know anything for sure until the biopsy results came back in about a week, it was the doctor’s opinion that we enjoy our time spent in limbo. I was starting Spring Break the following day and he told us to go on vacation, eat whatever and wherever, throw a kegger, etc. For months, we had lived in this paranoid, germ-a-phobic bubble with all kinds of precautions to avoid infection, and then all at once the doctor lifted all the restrictions with such nonchalance. We left the room in good spirits and I felt like I was living in some parallel universe. While the three of us knew the underlying meaning of the conversation we all took the path of least resistance – optimistic denial.

That night we walked down to the courtyard of our building. The temperature was in the 70s and it was the first time we had the opportunity to just sit outside and hang out. I sat against the front wall with my legs stretched out in front of me. He laid perpendicular on the stone yard with his head in my lap. He looked up at my face asked me what I thought the doctor really meant and I didn’t know how to say the obvious. I tried to be tactful, “Something might be wrong, but we can’t sit around worrying until we know for sure. Why? What did you get out of it?”

“Shit’s about to hit the fan so we might as well have fun while we can.” I had to appreciate his blunt response; it was the one I wanted to say, but couldn’t bring myself to.

For all that was said that day, the two words I really wanted to hear were “April Fools!” and not one person uttered that obnoxious phrase. Was that too much to ask for on April Fools’ Day?

Just Plugging Along

This was another post from the blog I created while Chris was recovering from his bone marrow transplant.

Well, my goal to write on this blog every three days isn’t as manageable as I thought it would be.

Don’t you hate it when life just rains down one load of crap after another?!

Well, I thought I’d share an update on Chris. He has been off of immuno-suppression meds for almost a week now and so far, no significant signs of graft vs. host disease (GVH) and his personality seem to be returning to normal. Now we just continue to play the “wait and see” game to make sure everything runs smoothly and in about 6 months, he’ll be getting his childhood immunization shots (again) and then he’ll be able to go back to work (which I know he’s anxious to do).
All in all, things are ok. His good health definitely counts for something major and is one of the few wonderful things I can say about our current situation.

Unfortunately, the stress and anxiety of keeping all of life’s balls in the air without any of them hitting the ground is getting to be a bit overwhelming. I keep doing all the relaxation tricks I know and trying everyone’s suggestions and I’m still battling to climb out of this dark, hopeless hole I’ve dug myself into. I know the conclusion of this journey will come at some point, although I’m not exactly sure how end will manifest itself, and I keep reminding myself that life won’t be like this forever and things are improving slowly. It’s just harder to see the big picture looming ahead at the end of this dark tunnel when all I can manage to do is see a few inches in front of my feet.

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.

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