And so it begins...

This journey actually began almost 27 years ago. I met the most amazing guy at my summer job before university, and fell in love. However, right at the same time we were getting engaged just 3 months later, my wonderful fellow found a lump in his groin. It turned out to be cancer, specifically Hodgkin's Lymphoma. It was somewhat of a downer on what should have been a happy time, but truthfully, I knew he was the one for me, even if we only had a short time. Luckily, with radiation treatments, his cancer was beaten into remission. We got married. We loved, lived, gamed, traveled and generally had a wonderful time. We were best friends. We seldom did anything separately.

Fast forward through 24 years of bliss. My husband got very sick over Christmas 2010. We put it down to a nasty viral strain. Then in March 2011, he started having night sweats, the kind that drench the bed. Just as he thought about going to the doctor about them, they went away. In June, he started having severe back pain. He went to see a doctor, and of course they thought it was just normal lower back pain that would clear up in 6-8 weeks on its own. Only it didn't. It got worse. By end of July it was excruciating and he couldn't even sleep. Then he got scans done. Near the end of August he saw his GP for the results, and the GP was ashen and told him it looked like he had multiple tumors all along his spine and there was something also in his chest. An appointment was made to see any specialist that could take a better look ASAP. It happened to be a respiratory specialist. He looked at the scans, showed us the areas of concern (which were numerous tumors, including one that was pressing on his spine), saw how hard it was for my husband to even walk at that time, and he immediately sent us to the hospital ER for assessment by neurologists.

This turned into more scans and waiting. After determining that paralysis was not an immediate danger, they sent us to another hospital where there were hematology oncologists. After another ER wait and visit, my husband was admitted that night and stayed in the hospital for almost a week of testing. He could barely walk, and was in need of strong painkillers just to try to get some sleep. They confirmed it was indeed cancer. This time a non-Hodgkin's Lymphoma, specifically Diffuse Large B Cell Lymphoma. They started him on R-CHOP chemotherapy. The good part of that was that the steroids shrunk the spinal tumor and the pain went away. He still needed physio to regain his walking ability again however. Apart from the time for the testing, and the days of the actual chemo, hubby continued to work throughout everything.

After five months of chemo, the tumors were mostly gone, as was the loose cancer that was floating about the empty regions of his chest cavity. However, there was still something in his hip bone. Because of his prior cancer, they were concerned about using additional radiation to target just this other area. So they decided on going with high dose chemo, with a rescue autologous stem cell transplant. In June 2012 he underwent this procedure and came through it with flying colors. By November he was declared to be in remission. And he returned to work in November as well, only being off for 5 months.

In May 2013, the night sweats returned. We both knew what that meant this time. Sure enough, in late July it was confirmed that the cancer was back. They started him on a new chemo regime, CISplatin and gemcitabine. He had 6 rounds of that, with the last one in December right before Christmas. In October the doctors told us that the only chance he had for a cure was to have an allogenic stem cell transplant. They told us that it was riskier than the one he had before, with a 20% mortality rate. Hubby and I talked about it, but both of us came to the same conclusion. If we didn't do it, the the risk of death would be 100%, likely in a year or two, and likely to be prolonged and painful. The transplant had a good chance of helping us have longer than that, with higher quality of life, but the risk was that death could be rather sudden and much sooner. Hubby decided he wanted to do the transplant. If he had to die, he preferred to have something that would be more sudden than to waste away before my eyes and need a lot of care in the process. I had to agree with his view.

The official search for a donor kicked off in late November. So at the end of January, after a suitable donor was located, hubby began the high dose preparatory chemo for the transplant, and on Feb 5 2014, had the transplant. All the drugs he was on before the transplant and after to help minimize the rejection and graft vs host side effect did not agree with him however. His kidneys in particular were not happy. He was constantly nauseous and could barely eat. He was started on feeding tube, but he managed to pull it out over night after just 2 days. The kidney function got worse, and they finally had to start him on dialysis on Feb 16. By then, he was suffering from the toxins in his body, and was rather confused and delusional. It was not pleasant to see him that way, and it really upset him the few times he realized that he was so "messed up". I knew it was not a great time, but I had no idea when I left him at 1 am on Feb 18 that I would be called at just after 7 am to be told of "a change in his condition" and arrive at the hospital as quickly as I could get there (which due to snow and rush hour traffic was over an hour) to find he had passed away.

I was devastated. I still am. It's only been a month and a half since he died after all. How could my wonderful husband, my best friend, one of the most vital people I know suddenly be gone? Truthfully, it still boggles my mind and I don't think I have accepted it. I cry myself to sleep every night, and usually cry again as soon as I wake up.

So, what then is this journey that started so many years ago? Well, when my husband was diagnosed with lymphoma this last time, I made a promise. When we got through this one (and I was sure he would), I would sign up for the Leukemia and Lymphoma Society's Team in Training.  I would raise money for a cause that was really close to home, and also get back into shape, something my husband really wanted me to do. I tried so many times over the last 3 years, but frankly, when push came to shove for how to allocate my precious free time, I chose to spend it with him. When he could come with me still, I would run while he biked beside me, or simply just bike or walk with him. But when he could not do that, I spent my time beside him, or just in the same room as him. Given that he is now gone, I stand by my decision. Those moments with him are now all I have left. My health I can attend to now.

When I made that promise to run back in 2011, I was expecting to have my husband cheering me on, or maybe even running with me. However, I will still fulfill my promise, in his memory.  LLS provide support and training to participate in an endurance event while the participant fund raises for their cause. I encourage anyone reading this to check them out  http://www-prd.teamintraining.ca/en-CA/our-mission .

And so it begins, my journey to go from being an overweight gaming geek to that of a half-marthon runner. I have registered for my event, which will be the Scotiabank Toronto Waterfront, on October 19, 2014. Training will begin officially in June. Until then, I am going to try to be active each day in some form, and to walk and maybe add a jog for a bit in the mix just to get a bit of conditioning on this flabby form. This blog will be my journal of this journey.

GeekGal and Hubby, Alaska
August 2008