As I have said all along, the toughest thing about keeping an honest blog – an honest account of my journey – is writing bad news. My Myeloma blood results came back this week and they weren’t very good. I could actually re-title this entry into “The Good, The Bad and The Ugly” but I think I have used that one before.
First of all the good: As far as the heavy chain proteins they are all normal. IGg – the one which would be high in an active Myeloma environment is at 1155. Normal range is 700-1600. While there is some comfort that this is a normal reading it hasn’t been this high since January of 2013.
Second – the bad: The M Spike continues to persist. It measured at .42 in this report. That is down from .46 in the previous but as we have discussed needs to be at zero. The M Spike has not been this high since October of 2013. It is almost the same (.53) as where it was in February of 2013. We did achieve a zero M Spike for a while in May/June of 2013 so it is attainable. There is a goal here to hit.
Third is the UGLY: My Kappa Chain proteins came in at 263.78. That is REALLY, REALLY high. In fact it is 10x higher than normal. This is the marker that has been concerning us lately. It was at 45.39 in August. It was at 26.89 in April at my 100 day appointment. Normal reading is 3.30 to 19.40. The last time my Kappa Chain was this high it was December of 2012. Three weeks after my diagnosis. The Kappa/Lambda ratio – the difference if you will between the two forms of light chain protein – is also as high as it has been since December 2012 as well.
Myeloma is back. Cancer is back. And this time it is being a real bitch. Obviously our choice in treatment is not working so we are looking to change it. I spoke with Dr. J yesterday and it looks like we will discontinue the Velcade and go back to Carfilzomib which gave me such a good response before. So I will be taking a combination of Carfilzomib, Pomalyst and Dexamethasome for the foreseeable future.
In the mean time, I have a previously scheduled appointment at Memorial Sloan Kettering on Wednesday with their transplant team to start the process of the T Cell Depleted Allogeneic (Donor) Transplant as described here.
Dr. J is also researching some clinical trials for me to enter as well. And here is the funny thing…the SILVER LINING in all of this. I don’t feel like I have Cancer. At all. I feel great. My energy is high – although I went through a period where I was getting really tired a few weeks ago – my energy is great. I am in great shape and I don’t have any of the associated pain I had when I was diagnosed. I told Dr. J and I told Helene – I KNOW WHEN I HAVE CANCER and I FEEL GREAT RIGHT NOW. But I can’t help but think of the warriors who fight or fought before me.
I can’t help but think about my Twitter friend Tom Kowalski – who you can read about here. Last June Tom was sending tweets about the Blackhawks games and eating at Demon Dogs. A few weeks later a tweet went out the said #RIPTomKowalski. That is how quickly this can turn on a dime.
I can’t help but think of my friend Andy Miller who seems to be right in front of me on this journey. Andy had his auto SCT a few months before me, then he had a second and his Myeloma numbers started skyrocketing. He was in such intense pain that he was admitted to the hospital for 96 hours of continuous chemo and is now searching for a donor for the T Cell Depleted Allo Transplant. You can read about Andy’s story (and contribute to his family) if you like here.
Andy has been such a good friend. We text back and forth on occasion and keep each other’s spirits up. The fight against Myeloma is tough. Andy is one tough dude.
So… where does that leave us? Where does that leave the Coustan family? Really – nowhere different than where we were before. I feel GREAT. I always said I really don’t believe that I have Cancer at all. That is somewhat true now. The numbers don’t lie…or do they? My blood says I have Cancer but my heart and mind are in denial. And I will remain in denial until I can’t do the things I need to do or the things I love to do anymore.
That doesn’t mean I don’t continue to fight. Because those things – family, work, writing, working out, my shitty golf game, etc ARE WORTH FIGHTING FOR. My job over the next couple of days is to get myself super organized so that I can take on all comers – AGAIN. I have to set my treatment schedule, my work schedule, my family schedule, my writing schedule and my workout schedule so that everything fits and everything has its place. This reduces the stress of trying to fit everything in at once. I have to get back on a stricter nutrition plan again. Since I have been feeling better my nutrition discipline has fallen by the wayside a bit. I will be back researching the angiogenetic foods and beverages to eat and stick to that diet plan again. I will be back to acupuncture again. I will throw everything I have – every weapon I have – into beating these numbers down because they don’t define me. I define me. How I feel defines me. The numbers are WRONG … again.
Again – let me reiterate – I FEEL GREAT. Numbers, shnumbers … although I am more sensitive to each and every tingle in my back and each and every twitch. Last night I was outside with Victor. As part of his commitment to be the best baseball player he can be he takes 75 swings (25 outside corner, 25 inside corner, 25 middle of the plate) off of a tee into a net every night. EVERY SINGLE NIGHT. I walked out in the backyard as the sun was setting and watched him methodically swing. Over and over again. After he hit the 75th ball I teed one up for myself. As the bat came through the zone and the ball flew into the net I felt a twinge in my back. The first thought was … CANCER… MYELOMA … but alas – probably just old age.