Allow me to get you up to date.
On Monday, I got the call from SRS that my Medicaid had gone through. Happy dance! By Tuesday, Gayle (my awesome transplant coordinator) had me on the schedule starting Thursday to begin the transplant process.
That gets us to today. Mom and I drove up to Kansas City and got settled into the Hope Lodge (a free hotel for cancer patients who are coming in from out of town for their treatments) and I just got my first Neupogen injection an hour ago. They give it to you in your belly here (as opposed to the back of the arm like they do in Topeka.) That was different. Burny. I'm trying to stay positive, centered, calm... but there is a part of me anticipating that pain again. I just have to hope for the best, prepare for the worst, and remember that all of this pain and sickness is temporary. Breathe in, breathe out.
So, this brings us to the next step- Tomorrow at 10 am is my surgery to have the Trifusion Catheter placed in my chest. Then another Neupogen injection. Saturday, another injection, and Sunday, another. By this point I should be producing enough white blood cells to choke a goat. On Monday I will begin the part where they hook me up to a dialysis sort of machine where they draw out my blood, centrifuge it, take the stem cells and give me back the rest. They say this can take up to three days. It is my aim to get it done on the first day. Like a champ.
After we collect enough stem cells, they freeze the goods and we get to go back to Topeka until Monday, March 7th. On that day (day "-7" in transplant-speak) I will begin my highest dose chemo yet. The immune system killer. I will get this for 5 days (Days "-6" through "-2") rest one day (Day "-1",) and then on day 7, (or day "0" for you cats who are now hip to the lingo) I will be given back my stem cells through my catheter, directly to my heart. (Fun fact: I will smell very strongly of garlic for 24 hours after this part. Long story short, it's because of a drug they put in the stem cell slushy to keep it from self-destructing.)
After that, we wait for "engraftment." Basically waiting to see if the stem cells took. And they will, because I'm a champ like that. Anyhoo, I'll go into greater detail about the whole "living without an immune system" stuff when we get closer to it. It's 100 days of strict rules, special dietary precautions, and (for a while) daily hospital visits. Scary stuff.
How am I? Scared but calm. Sad to see the farce of normality of the last few weeks come to an end. I miss my friends already, miss the shop, miss the freedom to just drive around on sunny days to no where in particular. Everything feels foreign. The Hope Lodge is very, very nice. Lots of sunny rooms and comfy looking chairs. I should look at this as a retreat. I have a lot of thinking to do, and I think this is the perfect place.
Think happy thoughts for me tomorrow. Much love, folks.
I have been reading all your blogs and let me tell you I have been keeping you in my thoughts. I think you are very brave and an encouragement to those struggling with sickness!
ReplyDeleteThinking of you Sara even while I'm in Guatemala. Maritza and I send our love! Be as strong as any human can be! Be fearless and kick it old school style in that "retreat" you call Hope House.
ReplyDeleteRock it. Rock it hard. Hugs to your mom too.
ReplyDeleteDonna Swaffar
Sara,
ReplyDeleteIt takes the strength of a warrior to withstand the battle you are fighting. When you are feeling that you need strength, look at your warrior picture. You will see yourself but you can draw strength from a fellow warrior through the picture. Focus and you will feel the energy flow from me to you.
May God and God's light continue to guide you.
Respectfully,
Daniel
Just checking in on you. Hope all is on schedule.
ReplyDelete