Some Bone Marrow Didn’t Make It

I didn't get a picture of my marrow, but this gives you a general idea of what goes on in there.
I didn’t get a picture of my marrow, but this gives you a general idea of what goes on in there.

Back to See Larry 
I forgot to mention it yesterday, but I needed to get another Bone Marrow Aspiration (BMA).  Not for fear of relapse or anything like that, but instead I had to do it as part of the transplant protocol.  Transplant protocol requires a BMA within 30 days of admission to show that you are in remission.  Granted, you can transplant even when you aren’t in remission, but they prefer you to be in remission.  My last BMA was 8/24.  My original transplant admission was 9/22, so that was within the 30 days.  My new admission date of 10/9 is not within the 30 days, thus another BMA.

Having Dr. Cripe drill into my hip wasn’t exactly the way I wanted to reunite with him. Granted, it was still good to see him.  He even made a joke about my fanny.  Yes, Larry cracked a smile while making a butt joke.  Good to see I’m rubbing off a bit.  I’m not sure why it never occured to me before, but I’ve never actually seen my marrow.  So this time when it was all done, I asked to see it and was able to look into a bloody petri dish and see little specs of marrow.  This is my 6th bone marrow aspiration and this one didn’t seem to hurt as much.  That might just be because I’m getting used to them or it could have been the oxycontin and ativan I took before my appointment.  Tough to tell really.

Confirming a Remission, Finding a Relapse or …
I wasn’t really too worried about what the BMA would show.  Granted it was a little unsettling that Dr. Cripe wanted to do one right away as opposed to waiting a bit.  You always kinda wonder if he knows something you don’t know.  When Lindsey and I spoke with him before the procedure he was mostly positive but had one concern.  My platelets were 138.  Now 138 is considered low, but I’ve had plenty of draws in the 130’s.  My whites (6.1) and hemoglobin (13.9) were fine, but still it seemed the platelets were nagging at him.  He let us know that he wanted to do the BMA sooner rather than later so that if he found something, we could tackle it immediately and we wouldn’t lose a few days or even a week waiting on the BMA to happen later.  Larry is definitely a good doctor and is looking out for us.

While the two main outcomes were a confirmation of my remission or a relapse, there was also an in between option.  To be considered in remission, I need to have less than 5% blasts in my bone marrow.  If I have more that 5%, that is considered a relapse.  Blasts are supposed to be in your bone marrow.  If a blast is a leukemia cell, it will remain a blast and never mature into a normal cell.  If it is a healthy cell, it will continue to develop into a normal cell. The problem is there is no way to tell if a blast is going to turn into a leukemia cell or a normal cell.  So that’s why they have to look at the percentage of blasts in your bone marrow.  If you have more that 5% that means the blasts aren’t developing into normal cells and you just won a trip up sh!t creek.  Below 5% and you are good.  However, it’s also possible that Dr. Cripe could see an increase in my blasts that didn’t go above 5%.  He never got into numbers, but let’s say my blasts were 2% on 8/24 and now they are 4.9%.  Technically it’s not a relapse, but it could very well turn into one.  He basically said it’s a judgement call at that point and he may have me go back on blinatumomab for a little bit if he thought he was seeing a precursor to relapse.

The good news is we don’t have to worry about the inbetween scenario or relapse.  Dr. Cripe contacted us late last night and let us know that my bone marrow looks great!  So I’m still in remission and can proceed to SCT 🙂

Ambiguous Loss
Throughout my life I’ve gone to speak with professionals from time to time.  Some call them therapists, others call them counselors.  I haven’t been to see anyone in a long time, but this past Friday I went to see Mary.  Mary and Lindsey have a long relationship, so I know she’s a solid counselor.  I specifically wanted to talk to her about handling cancer.  Not so much about how to handle cancer, as I think I’ve done ok with that, but I kind of wondered if I’m missing something.  If there should be something else I should be doing or some other way I should be feeling.

One of the key takeaways from my conversation is that I suffer from ambiguous loss and am grieving that loss.  Ambiguous loss is exactly what it sounds like.  The loss of something that isn’t quite tangible.  For me, that is loss of routine, loss of my job, loss of my role in the family and a multitude of other things.  Now to heal ambiguous loss, it makes a lot of sense to take away the ambiguity.  However that’s not usually possible and definitely not possible in my case since I’m still battling cancer.  So the other alternative to deal with ambiguous loss is to increase your tolerance of the loss.  This basically means you need to get strong so that the loss is easier to handle.

Quite frankly, I’d rather just take a pill that heals my ambiguous loss, but I’m working to understand it better.  Working to have a bit more of a schedule in my life.  Taking advantage of the positives of the loss, such as spending time with the kids, and of course relying on my faith.  I imagine we all have some form of ambiguous loss.  Something that nags at us that doesn’t quite go away.  It’s important to recognize it as a loss and grieve it.  It’s also important to not dwell on it and fill it in with new things.  I’m trying to do that now.

A Duck Dynasty Prayer
Although I don’t find myself having to be patient for a date, I now find myself being patient to reach that date.  Thank you for each day I get to enjoy with my family.  Thank you for each activity we get to do together.  Thank you for another day.

6 thoughts on “Some Bone Marrow Didn’t Make It

  1. I don’t know if you need another marrow donee- but I’m willing to b tested if you do. Shoot me an email if you would like me to do that. Lindsay is one of my daughters Heros and I am in awe of your family.

    Liked by 2 people

  2. I’m so relieved to finally get those all those words at the start of this post to finally read you are still in remission! Whew!!! 🙂
    Also, I’m sure those drugs were great and all, but I’d like to think the many prayers said for this BMA had something to do with the less pain! I’m sure you are very relieved to have this past you. Onward to the next day!

    Liked by 4 people

  3. Waiting is always difficult. However you are on the final leg of your journey that included a bit of a detour. Just a ” bump in the road”. God is directing this journey. So relax and enjoy some precious time with family. Wont be long and you will be back in a familiar routine.

    The great Phycian watches over you.

    Liked by 1 person

  4. Rob every time I read one of your heartfelt posts,my heart wants to burst with the love of our Lord. You make be believe more, accept more and try harder. Unending prayers for you and your family. Thank you for inspiring me!

    Liked by 2 people

  5. Good faith-based book to read is AFFLICTION by Edith Schaeffer, widow of Francis Schaeffer. God will open new areas of your life, that you wouldn’t experience otherwise, through your ambiguous loss. He is faithful. Continued prayers.

    Liked by 2 people

  6. Progress is good and you are definitely making progress. Going thru cancer and all the appointments and test and chemo and dr’s visit is a little overwhelming at times. And when all is done the letdown is a little hard to accept. But what I found was that it taught me to Let Go and Lwt God have more control. I understand your worry about being able to do things with the kids. One thing I have to say is that Natalie and Sydney are very grounded young children and obviously loved tremendously. They are well trained and very polite. You and Lindsey are doing a great job with those kids. And they are a beautiful reflection of the wonderful people you and Lindsey are.

    Continue to pray for a successful SCT and a long and healthy future.

    Love and hugs
    Aunt Liz

    Liked by 2 people

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