more delays

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Hello dear village!  It has been a while since I’ve updated, and a lot has happened recently.

First of all, we finally got the blood tests back and now have confirmation that my brother David will be my stem cell donor.  I’m so thankful that both of my brothers were more than willing to brave the needles for me!

So last Monday I went in for my pulmonary function test.  It was the final day of my steroid taper (yay!), and I thought I did a pretty good job.  But then on Tuesday I got a call from my nurse coordinator, and it turns out I didn’t pass the test.  I did okay on the three areas that I could control, but I didn’t do so well on the part where they measured how well my lungs oxygenate my blood.  The magic number to pass was 60, and I was at 38.  So we still have some work to do.  Unfortunately, this means that everything is on hold again until I can be cleared by pulmonary.  So the plan now is to take the PFT again in a couple of weeks, and if I can get up into the 40s, I’ll be evaluated by the BMT unit’s pulmonologist.  They will decide if we can take the chance and go ahead with the transplant, or if we need to wait a while longer and heal further.  The good news is that the CT scan I did on the same day as the PFT looked pretty stable.  The cancer spots are not growing super fast, so we’ve got a little time.  I am starting to notice some Hodgkin-y symptoms returning, but they are nothing like what they were at the beginning of this whole process.  The most difficult thing to deal with is the fatigue.  But I think that’s also a result of all the grueling treatments I’ve put my body through for the past two years.  TWO YEARS.  Plus the two years it took us to find a diagnosis.  At times it’s been really hard not to let this cancer just overtake my whole life, particularly since I can’t work anymore or physically do so many of the things I used to do.  But the important thing to remember is that I’m still here, and in two more years, I’ll still be here.  I’m not giving up, and I know you guys will not give up on me either.  So for now, please pray that my lungs continue to heal, so that I can do this transplant already!  And please pray for David, that his stem cells will love me and want to be a part of me and not attack me.  🙂

On a side note, I had to have a surgical procedure this past Thursday.  A few weeks ago I got a sinus infection and an ear infection, and after a round of very strong antibiotics, the infections had cleared up, but my right ear was still stuffy and muffled.  I couldn’t hear out of it at all.  My oncologist sent me to the ENT, who gave me two possible solutions: 1) a round of steroids, or 2) a tube in my ear.  I pretty much shouted HELL NO to the steroid option, so #2 it was.  I tried to get him to just do it right then and there in the office, but apparently it’s one of those things that has to be done at the hospital under anesthesia.  He was unmoved by my protestation that if I could endure multiple breast and bone marrow biopsies, I was already a total badass and cutting a hole in my ear would be no big deal.  I was even ready to offer my nurse Mary Ann’s services in cleaning up the blood for him.  No go.  So on Thursday morning Mary Ann took me to the Barrett surgery center at Wellstar Cobb and I patiently waited with all the other little kids to get a hole punched in my ear. We ended up being there pretty much all day, and I was awfully hangry by the time we got out of there, but overall the procedure went well.  My ear doing better already.  I can hear again, though I can tell there’s still some fluid that needs to drain.  I’ll go back for my post-op appointment next week.

So those are the highlights.  I’ll let you guys know how the next pulmonary function test goes.  Fingers crossed!  Love and light to you all.

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5 responses »

  1. You have got to be the strongest person I have ever known! Love to you and the progress be completely successful!

  2. This is a marathon not a sprint! Slow and steady says the turtle 🐢 . You remain in our thoughts and prayers. Love you ❤️ Uncle Tom and Aunt Brinda.

  3. Hey Kristi,

    I just wanted to say hello. I see your posts come up from time to time, and you are in my thoughts and prayers. I came across old yearbooks, even back to Franklin, in my parents garage a few weeks ago. It’s crazy how you lose touch with people over the years. It looks like you have a great support system with your family and friends, and that is awesome. You are such a fighter and have seemed to stay optimistic through all the trials. I just wanted to let you know that even though we haven’t talked in years-almost decades at this point – I am always happy to read the updates, hear of the progress, and I look forward to reading the update when you have made it through!

  4. Jeeze you are a good fighter! Keep it up! And tell those lungs: we said “to behave” next time around. Seriously, couldn’t be more impressed and inspired by you spirit. Just darn wonderful.

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