Back to the Drawing Board.

it is with great sadness as well as a flood of other emotions, that I tell you the transplant failed. The way my doctor put it, my cancer has become very smart by now, since it’s been around for so long. It has no trouble recognizing healthy cells to take over. So what does that mean??

here is the plan:

  1. Liver biopsy ASAP (this will be the immediate response, and will be performed sometime in the next week)
  2. readily available trial medication
  3. Donor lymphocyte infusion
  4. clinical trials, various
  5. 2nd donor transplant

My docs seem optimistic, which makes me feel a little better, even if there is a hidden agenda is curing someone like me, and gaining a little publicity for it. Because I say, use me all you want in that case!!

there is a readily available drug that just came on the market recently (called NIVO something or other) which in theory could work for someone in stage IV with transformed diseases. The kicker here is that this drug has not yet been tried on someone post allo transplant like me. But trust, I’m totes be that lab rat.

There are a few other clinical trials for transformed disease in the liver, that I should be eligible for as well. These are designed to test the DNA of my liver, and to take a look to see if there is say a lung cancer treatment medication, that looks like it could potentially pair well with what my physical make-up shows.

There is also a procedure called a donor lymphocyte transplant. This is where just lymphocytes from the donor are injecting into my immune system. This is supposed to open my immune system up, so as to make it succeptable to accept these donor cells. The risk of that is gvhd (graft vs host disease) but at this point, I’ll take that any day over cancer.

My transplant doctor told me that we have some time, and I’m not going to die. You have no idea how powerful these words were to me, and I’m praying he is right. He said the last resort is a second allo, because he really believe that a combo or one of the other things listed above could be my savior.

Anyway, overall both derek and I are feeling both shocked and numb at the same time. Once again this happens during the holidays. Once again, our hopes of a cure are dashed. And once again, we didn’t see it coming. I really appreciate all of the positive vibes, prayers, etc from everyone (especially Mrs. Emily Quarrick’s class). It’s rather hard to talk on the phone right now until I can get things together mentally, so please don’t take offense if I don’t answer or it takes a while for me to call back.

I guess overall, things could be worse, and at least none of these drugs will make me lose my hair. So many perks.

dear God-I’m not ready yet.  believe me when I say that I’m strong enough now. Please move on.

15 thoughts on “Back to the Drawing Board.

  1. You are such an amazing person words cannot express how in awe I am or your courage. May God Bless you and your family through out these many trials. We are all pulling for you Mary.

  2. You are in my prayers. I’m so sorry that you are faced with this again. Please know that we are all pulling for you! Good luck, you are a fighter!!

  3. Dear Mary, you don’t know me but you work with my husband Roger Bird. I have been reading your blog for almost a year now and your strength, determination and courage in fighting this cancer is amazing. I am so sorry about this latest news,, but me and Roger pray that you will ultimately as you say ” kick the shit out of it” and send it on its way. You are truly inspiring and our prayers are with you and your family.

  4. Mary, Keep all the positivity going. You are one hell of a fighter, and nothing can take that away from you. That is such a tremendous quality to pass along – To your family, to your fellow fighters, and to your readers. Stay positive for them, because we are all staying positive for you.

  5. I think about you often Mary! Your positivity radiates through each post!! Keep your pretty head up and never forget your reason for fighting! You will continue to be in my thoughts~ ❤

  6. Mary, may our Lord, Jesus Christ, be by your side as you take your next steps toward healing. Thank you for sharing the options that the doctors explained to you. Have Only Positive Expectations. We live on HOPE. You are an inspiration and you continue to Inspire. May God bless you.

  7. Is it now the 4th year since this started? You are surrounded by a husband that loves you very much, a son that loves you also but does not know you as a well person, parents that are going through emotional times, friends, family and workers that are with you in thought and prayers everyday. God has a plan for you, as to what it is, no one seems to know it, but He is surrounding you with people that continue to give and believe in you with their prayers and support and options to try different ways to beat this cancer. Most of all He is giving YOU the will, strength and attitude to continue this journey. As you see from other comments, your strength and determination (as a role model) are being given to all others around you. I am sure that you are not as strong as you could be every day, but you have the strength and the love and support from everyone around you to continue this fight to get better. Our prayers go out to you and the doctors and caregivers to continue getting you well. Love y’all.

  8. Ugh!! How fucking unfair this shit is!!!! Stay strong Mary and keep fighting! Loving that your doc has options (plural) for you! You are always in my prayers. My sister died of fucking cancer 6 yrs ago this November leaving behind a husband and 2 year old. I don’t want that for you!!! Never lose HOPE!!!!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s