7/25/14 – The One I Wish I Didn’t Have to Write

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.

18 responses to “7/25/14 – The One I Wish I Didn’t Have to Write

  1. Brad–you continue to inspire all of us…I am a firm believer that attitude and positive thoughts are what gets us through challenges. Continue to fight and keep yourself in the right mental zone to tackle this. We love u and always keep you and your family in our thoughts and prayers each and every day! xoxox

  2. Brad, your positive attitude is simply amazing and must certainly be at least half of the battle! When I read today’s post, AC/DC’s song T.N.T. popped into my head and the refrain “TNT, FIGHT, FIGHT” just replayed over and over. I play this song a lot when I’m working out and it pushes me. Perhaps listening to this while undergoing your chemo will push those powerful drugs exactly where they need to go to blow up the cancer cells. Visualization can be very effective in all kinds of treatments. We will continue to pray for you and Helene and the kids and if we can be of any assistance, please let us know!! FIGHT, FIGHT!

    • Thanks for being so open and honest with us. We love you and are keeping you in our thoughts and prayers. Keep believing and fighting! We’re with you!

  3. Brad, you continue to inspire me every day. I pass your eloquent blogs to others because they NEED to hear who you are and what you stand for. It isnt what happens to you in life that defines the person. It is how you react to the good and the bad. I truly admire your ability to lay it all out there. This weekend I will dedicate my yoga to you this weekend. You, unknowingly, have been a gift to more people then you could ever imagine. Keep giving!!!!

  4. Brad, stay positive. Stay strong. This really sucks. Hearing about the two guys (you and Andy) a few steps ahead of me when my journey started. MM is one bad cancer. It zigs and zags. Trying to out dodge it is part of the game (treatment wise). Let’s hope we all dodge it and give it the proverbial finger.

  5. Brad, not the blood results you wanted to get, but some how as I see the person you it will just make you fight harder and change your game plan alittle . I think you have learned flexibility and realizing the zigzag path of this cancer( as the other comment says). I laugh at your hitting with the bat and feeling a ting in your back,yes all us folks over 45 see to get that. We might not be young anymore, but we know from age comes great wisdom, and my friend you are wise beyond your years! Love ya!

  6. Brad – I have been following your progress through your blog for a while. I was diagnosed with MM 5 years ago at the age of 48. Because there are so many novel agents, I chose not to have a transplant yet. I wanted to leave at as my last option. However, it is a very personal decision. I went through many various protocols using various combinations of drugs. As you are probably aware, in many instances they just stop working after a while. Currently I am on Carfilzomib, Pomalyst and Dexamethasome. This combination seem to do the trick. I am very optimistic that this protocol will work for you. You have a great attitude. I appreciate your honesty and I can relate to many things that you are going through.
    Best, Michael

  7. You constantly amaze and inspire! So, not the numbers you want, but you go on. I love the fact that you keep fighting. And you’re probably right, that twinge in the back after taking your swing…old age! Enjoy it 🙂 Prayers for you, Helene, Victor and Ava!

  8. Brad, dude you are soooo strong! Know that the Fitz’s are there – in spirit- fighting with you. Your Fan.

  9. Hi Brad,
    I am a new reader of yours. I know exactly what you mean….I feel great too! (In spite of the fact that I’m starting the process for a stem cell transplant next week). It’s crazy! I also believe in the power of a positive attitude. Rock on my friend!
    Kim

  10. Brad,
    Just found your blog. It is wonderful, thank you and good luck to you.

    I’ve just recently relapsed with myeloma refractory to velcade and rev. (12 months post SCT) Just started on Pom and expect to be adding Car (with dex, of course). Sounds like your experience with this has been pretty positive. I’m feeling pretty wiped out. Was training for marathon and now having a heck of a time covering 6 miles. Will I get accustom to this stuff?

    Appreciate your perspective on this… for me it is #chasingeverysunrise.

    Thanks
    Andy

  11. In reading everyone’s comments, the thing that strikes me is the amazing effect that you are having on so many people. Your course sounds similar to that of my friend’s and she did very well on a number of protocols for many years. Glad to hear you are at least feeling well and continuing to fight the good fight. Keep it up man…I still want to play golf w/ you whenever you come to Boston! xoxo

  12. Dear Brad, took me a couple of days to try to respond to this blog post. You know we are keeping your positive attitude when we think of you. Can’t have too many people pulling for you in a positive way – the power of positive thinking, you could write a sequel to the book. You are amazing! Keep it up. Hugs, Aunt Roberta

  13. Brad, I don’t know what to say except, this is shitty for all of us! When I look back on my numbers, I see the Kappa light chain starting to creep up but my m-spike staying at .2, until November ’13. When I got to .4 in March, we decided to start Velcade again. My IGG #’s are in the normal range, but the ratio is not great. I’ve had 4 rounds of Velcade, and I can only get to .2 m-spike. I keep telling myself that .2 is just my number. I, too, feel great. The only time I’ve felt crappy was the 19 days in the hospital during the SCT. I fully believe the positive attitude will carry us far along this journey. Hopefully long enough for more drugs, and maybe a cure. Keep up your honesty in the writing. It means so much to so many of us! Best of luck in fighting this and I will keep you in my prayers.

  14. Brad – You ARE the MAN. Keep fighting and keep that positive attitude. You are an inspiration to all… Prayers and love coming your way. xoxoxo The Harlows

  15. My mom was diagnosed with MM in 2010 and lost her battle on June 13 2013. She went into remission for close to 8 months on medication shortly after being diagnosed. This cancer destroyed her body, surgeries in her legs arm, shoulder. She suffered and I’m glad she is no longer in pain. I found your blog through the MM Race in Chicago page. The story of your nephew moved me. I wanted to be a part of the race but I live in Michigan. I hope to make it next year. You keep fighting, Brad. For you, your nephew, and your family and friends. My mom missed my little boys birth and I wouldn’t want family torn apart like mine was. Keep fighting the fight and never stop fighting.

    Ms. Walker

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