The PET scan results arrived yesterday. They showed a "significant" increase in cancer involvement. There was a spot on his lung (which has actually been there before--the second transplant got rid of it initially) and some involvement in his liver. Because of the increase in disease involvement (including the re-emergence of the dreaded plasmacytomas), the doc pulled his last immune suppressant/anti-rejection drug on Friday. In an ideal situation, this drug would be weaned down slowly. Our "hand was forced" so to speak to remove the brakes on the donor cells and let them hit the gas. The risk of doing this is GVHD, obviously, and pretty much within 48 hours we noticed an increase in skin symptoms and mild/moderate facial swelling.
The GVH symptoms that he is displaying are a good sign. It means that the donor cells are responding in their "foreign" environment, thus most likely attacking the cancer cells as well. Because of the presence of GVHD, the treatment plan right now is to wait........wait for the donor cells to do something. Since we have visible signs of cancer re-emergence in the form of the skin plasmacytomas, the docs are watching these closely. If he shows an increase in tumors, we may need to re-introduce some chemo in order to make the fight more fair for the donor cells. The risk of that, however is increasing strain on his body outside of what the GVHD is already doing (plus, chemo attacks good guys too). I don't know how long exactly we wait for the donor cells to do their work, but such as it is, we won't wait longer than 4-6 weeks if we continue to see cancer movement.
There is a specific level (called the LD level) that is one indicator of cancer involvement and we have been watching this level rise quickly over the last two weeks or so. Yesterday, however, on the tail of our bad news, we saw his LD level only rose 20 points. This may possibly indicate that the cancer level is slowing down. His other blood counts were great too (WBC, RBC, platelets, etc).
The news that the "cancer has spread" alarmed everyone. I have found it takes a few days to process information and sort out what is truly happening. Here is the bottom line: THERE IS A LOT OF HOPE. The donor cells have just been unleashed to their full potential.
Yes, we were/are very heartbroken by this news, as was everyone. We knew the cancer was back, but to hear the word "significant" was like a cruel knife twist.
I have made the choice to allow God's will in my life, as difficult as this is. I shake my head when I hear people say Christianity is a "crutch" or a "comfort" (I once thought these things myself). In actuality, choosing to believe the promises of our God despite all odds is the furthest thing from a crutch I can think of. The comfort I receive is from the Holy Spirit, not the knowledge of my religion. We will persevere. God is going to make something beautiful.
I love you all and may God bring us peace,
Kristin
Update: 10/24/13
LD level dropped significantly today (very promising). Other counts went the right direction as well.
Update: 10/29/13
LD dropped 8 points... not much, but enough to continue the downward trend. Kev noted today that some plasmacytomas feel smaller and less swollen.
Wednesday, October 23, 2013
Tuesday, October 8, 2013
I have felt this blank page calling me for a few days now, my emotions ready for some catharsis apparently.
For those who aren't on Facebook (https://www.facebook.com/takingchristsyoke), we found out on September 23rd that Kev has fully engrafted his brother's stem cells. This is one step in the process and now the cells have to begin identifying the cancer as a foreign invader. In order to speed this process along, the docs have pulled one (of two) anti-rejection drugs and began yesterday the process of weaning the second. Kev continues to experience mild to moderate GVHD, including poor appetite, mild skin rash/itching, and fatigue. The radiation did an effective job on blasting the plasmacytomas, and it's equal parts relief and fear to know that treatment is finished for now.
I'm thinking that the most effective way to continue this update would be to have a short Q&A: :-)
When will we know if this transplant is working?: Kev will get PET scans routinely, although I don't know when his first will be--probably in a couple of months. He is also getting his cerebrospinal fluid checked monthly. He had this done yesterday and we should find out the results tomorrow (the last one was clear). Be mindful that future PET scans may show active cancer and that this isn't cause for immediate alarm--remember, this transplant isn't meant to stop the cancer from coming back, it's meant to give his body a permanent way to fight it off.
How often is Kev at the doctor?: Kev goes to clinic now two times a week. He usually receives magnesium infusions (2 or 3 bags) because one of his anti-rejection meds lowers this level significantly. I swear, they are going to turn Kev into Magnito from X-Men.
He gets his blood counts checked each time. Some good news is that his levels are steadily rising (platelets, WBC, RBC, etc) indicating healthy bone marrow.
Is Kev going to be getting any more chemo? No, not at this time. Again, the stem cells are the treatment at this point.
Will Kev be "cured" if this works? Currently, this word isn't used for Myeloma, but that statistic can kiss my a$$.
When will Kev return to work? Monday, October 14th!
If you have other questions, feel free to ask. Things are slowing down from a treatment standpoint and I'm asking for prayer during this transition. Sometimes the expectation that you'll feel relief during this period leads to disappointment when it doesn't happen quite the way we expect.
One of the most mind-blowing parts of being on this road as a Jesus follower was the moment I realized that faith is a choice, not a feeling. Without even realizing it, I had fallen into the same trap as many other Christians, thinking that I would feel a certain way about hard times now that I was a believer. Let me shine a light on some reality here: It has been my experience that Christians feel the exact same way as non-believers when faced with devastation. We can't feel our way into faith in the same way that we can't feel ourselves into being happy if we're not. What does that high paid shrink say to the glum-hearted? "Try acting happy. Smile when you don't feel like it. Be nice to that telemarketer. Go out to happy hour with a friend." Make a choice to act out happiness and the feelings will follow.
Well, faith is the same way. Choosing to believe the promises and the goodness of God is the reality......and the blessings that come from walking with the Holy Spirit through the sufferings are so humbling and amazingly good that being on my knees just doesn't seem far enough.
Consider this verse (Romans 5: 3-4) : Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
Hope is put last in this order. God will get us there, but look what has to come first: suffering and character building--moving forward, clutching to the promise that God is sovereign despite all feelings.
So next time you don't feel hopeful or joyful about Jesus or God's promises, choose to believe them anyway--God will get you there.
Thank you for allowing this blog to be a blessing to me by faithfully reading my words. Love to you all,
Kristin
For those who aren't on Facebook (https://www.facebook.com/takingchristsyoke), we found out on September 23rd that Kev has fully engrafted his brother's stem cells. This is one step in the process and now the cells have to begin identifying the cancer as a foreign invader. In order to speed this process along, the docs have pulled one (of two) anti-rejection drugs and began yesterday the process of weaning the second. Kev continues to experience mild to moderate GVHD, including poor appetite, mild skin rash/itching, and fatigue. The radiation did an effective job on blasting the plasmacytomas, and it's equal parts relief and fear to know that treatment is finished for now.
I'm thinking that the most effective way to continue this update would be to have a short Q&A: :-)
When will we know if this transplant is working?: Kev will get PET scans routinely, although I don't know when his first will be--probably in a couple of months. He is also getting his cerebrospinal fluid checked monthly. He had this done yesterday and we should find out the results tomorrow (the last one was clear). Be mindful that future PET scans may show active cancer and that this isn't cause for immediate alarm--remember, this transplant isn't meant to stop the cancer from coming back, it's meant to give his body a permanent way to fight it off.
How often is Kev at the doctor?: Kev goes to clinic now two times a week. He usually receives magnesium infusions (2 or 3 bags) because one of his anti-rejection meds lowers this level significantly. I swear, they are going to turn Kev into Magnito from X-Men.
He gets his blood counts checked each time. Some good news is that his levels are steadily rising (platelets, WBC, RBC, etc) indicating healthy bone marrow.
Is Kev going to be getting any more chemo? No, not at this time. Again, the stem cells are the treatment at this point.
Will Kev be "cured" if this works? Currently, this word isn't used for Myeloma, but that statistic can kiss my a$$.
When will Kev return to work? Monday, October 14th!
If you have other questions, feel free to ask. Things are slowing down from a treatment standpoint and I'm asking for prayer during this transition. Sometimes the expectation that you'll feel relief during this period leads to disappointment when it doesn't happen quite the way we expect.
One of the most mind-blowing parts of being on this road as a Jesus follower was the moment I realized that faith is a choice, not a feeling. Without even realizing it, I had fallen into the same trap as many other Christians, thinking that I would feel a certain way about hard times now that I was a believer. Let me shine a light on some reality here: It has been my experience that Christians feel the exact same way as non-believers when faced with devastation. We can't feel our way into faith in the same way that we can't feel ourselves into being happy if we're not. What does that high paid shrink say to the glum-hearted? "Try acting happy. Smile when you don't feel like it. Be nice to that telemarketer. Go out to happy hour with a friend." Make a choice to act out happiness and the feelings will follow.
Well, faith is the same way. Choosing to believe the promises and the goodness of God is the reality......and the blessings that come from walking with the Holy Spirit through the sufferings are so humbling and amazingly good that being on my knees just doesn't seem far enough.
Consider this verse (Romans 5: 3-4) : Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
Hope is put last in this order. God will get us there, but look what has to come first: suffering and character building--moving forward, clutching to the promise that God is sovereign despite all feelings.
So next time you don't feel hopeful or joyful about Jesus or God's promises, choose to believe them anyway--God will get you there.
Thank you for allowing this blog to be a blessing to me by faithfully reading my words. Love to you all,
Kristin
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