The Journey

Been awhile...

2010-05-16T02:33:00.000-04:00

Unfortunately, I am failing miserably at my goal of keeping this thing updated every two to three days. "The best laid plans of mice and men..." Quite a bit has happened in a very short period of time which would account for some of my slacker-itis. I'm not really ready to once again rehash said events just yet, but definitely one day soon.

Day 129

2010-03-06T06:20:00.003-05:00

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 and his personality seems 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.

Day 100

2010-02-05T23:42:00.011-05:00

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 stuborn 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 surprised and impressed with how he 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 restuarant and life was looking bright and hopefull. 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. Unfortuntely, 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 comfirmatory tests. I refused to be the one to break the news to him and instead, vaughly 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 in 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 knowlingly frought 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 he can do is continue to channel positive energy toward the ultimate goal: him responding favorably to the transplant and overcoming this disease.

Day 96

2010-02-01T21:15:00.003-05:00

Day 96 refers to how many days its been since Chris received his BMT. He 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 2 rooms down from us in the Acute Oncology Unit back in Nov/Dec of '08. 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 treatment of most blood/immune cancers require extensive care, specific routines, and HUGE lifestyle changes, you quickly become indocturnated into this culture in which every conversation and activity you participate in revolves around the disease and it's 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, a fairly good day. Hopefully, with continued positive thought and energy, this trend will continue.

and so it begins...

2010-01-31T21:05:00.003-05:00

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 myelogenous 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.