Hello everyone! I’ve had a lot going on recently with my health, so it’s time to give you guys an update!
On Monday, October 17th I went into KU Medical Center to have my 10th bone marrow biopsy. I have to be sedated for these biopsies because they truly are one of the most painful things I’ve ever experienced. Paul and I drove up there because I need a driver when I have these procedures. I’d have to say that of all the biopsies I’ve done so far, this was the quickest of them all. I’m telling you, I don’t think this thing even took them 5 minutes. When the nurse told me they were done I almost couldn’t believe it. It’s usually a two part procedure, first part is getting a sample of the marrow, and the second part is coring into my bone to get a sample of the actual bone. I thought for sure they meant only the first part was done, but NOPE, the entire thing was finished. They joked around saying that this was a difference from having a nurse practitioner doing it instead of a doctor.
That Thursday I went up for my regular appointment and told me the results were cancer free and everything looked perfect. Always a great thing to hear.
Probably a few days before my biopsy, I took a shower and as I was drying off Paul told me I had something on my boob. Upon further investigation, it was a strange bump. Not much bigger than a bug bite but it certainly didn’t feel like a bug bit. I made Paul outline it for me, just to see if it grew or anything, so I could let the doctors know what was going on. I showed it to the doctors that Thursday that I got the bone marrow results. They were extremely concerned. I always hate when I hear the word “worrisome” come out of my doctors mouth because that is never a good sign.
Apparently he is friends with a dermatologist and texted him to see if this was something he could look at or because of the area would I need to see a plastic surgeon. He said he could see me and texted my doctor to have me come in the next day at 12:50. I had my friend Amber with me who had a doctors appointment of her own that was important. So I drove us home and planned on driving back up there by myself the next day.
Of course with my luck, nothing ever seems easy. I managed to miss my alarm that morning and woke up just a little before 11 am. Definitely not enough time to get myself up to Kansas City which is a two and a half hour drive. So I finally got the number of the doctor’s nurse and left a message for her to call me back. I didn’t want to make the drive up there for them to tell me that I can’t be seen. Finally, around 12 pm I got a call back from the nurse who told me to just make the drive up there. as long as I could get there before 4. Since it was only 12, that was no problem at all.
I get there and I’m told they’re going to do a biopsy of the spot. He numbed me up with lidocaine and actually ended up taking the entire bump off which wasn’t much larger than a dime. He said he was going to send it off to the lab and they would give me a call or let my oncologist at the clinic know the results. I also found out I have Rosacea on my face, which explains why my entire life my face has always been so red like I’m embarrassed all the time, and you don’t even want to know how red my face gets when I am actually embarrassed lol.
So the only instruction I really got about the spot was to put Vaseline on it. Friday, Saturday, Sunday it looked perfectly fine. Monday it started getting red and infected. I tried to call the clinic who told me to get in touch with the dermatologist. I called the number that the clinic gave me, which sent me to a voice mail and I left a message. I never heard anything back from them, but Thursday was my regularly scheduled appointment anyway.
Thursday, October 27th I found out that the bump on my breast was cancerous and from my leukemia. He said sometimes the immune system has the ability to keep your bones clear of cancer, but might not be able to handle the cancer on your skin.
From here we had a few different options. I could go do some chemo treatments called Dacogen. It’s supposed to be a mild chemo, doesn’t make you very sick but last time I did Dacogen I ended up neutropenic and was up in Kansas City for over three weeks. But the good part is that I can do Dacogen here in town so I won’t need to spend so much time in Kansas City. As much as I love my doctors in Kansas City, it does get tiring sometimes traveling up here. They also would look to get some additional white blood cells from my mother when she comes to visit me at the end of November for Thanksgiving.
My second option would possibly be getting another transplant. Since I don’t have a donor on the registry I would have to do a half match with my sister. So that means another month in the hospital followed by three months living in Kansas City. My mother would need to fly down and live with me to be my caretaker which I’m sure she absolutely wouldn’t mind doing but I hate that I take away months of a time from her life.
He was leaning more towards the dacogen side, but either way I was going to need a port. I asked if I could have a power port installed so that I could keep it in for longer than a PICC line or a trifusion since these random tumors keep occurring when everything is going great for me and he thought that was a good idea. They scheduled that for me November 3rd. In the mornings the doctors all meet together and talk about their patients. My doctor needed to present my case to the other BMT doctors and see what they thought I should do for treatment. Whatever the general consensus was, will be the treatment I would do. The next day I actually did hear from him and he said he wanted to do a completely different route.
Immumotherapy is kind of a new cancer treatment that seems to have promising results for people who have relapsed after a BMT and who also have issues with tumors. He actually brought this option up to me in July to try but because I didn’t have an active case of Leukemia at the time my insurance wouldn’t pay for it. Now that they’ve found another tumor he will be writing a letter to my insurance to have them pay for this new treatment. It’s not FDA approved yet so the drug will come right from the manufacturer. So with the insurance approval and the shipping from the manufacturer it might take a few weeks for me to actually start this treatment. He cancelled my port installation because he said it won’t be necessary with this new route he’s chosen. I’ll receive the medicine by IV every three weeks for 4 doses, then potentially every 12 weeks up to 60 weeks if it prove itself effective.
Honestly, I was really happy to hear this news. I know it’s experimental but if the side effects aren’t as bad as chemo and I can stay home, I’ll be very happy. It just sucks being sick all the time and away from my boyfriend and my puppers. They said that this could make my GVHD (graft vs host disease) flare up and since I’m already dealing with such bad joint pain that is managed well by palliative care I figure it shouldn’t too bad. It certainly beats throwing up all the time, not eating, and having diarrhea.
I’m going up there Thursday. He believes he’ll have more information for me then with whats going on with my insurance. My friend Tiffany will also be flying in this Thursday. She orginally planned to be with my through my port installation but the plan changed after she booked her ticket. That’s okay though because I’m really looking forward to her visit and I’m glad she’ll be there as I’m getting more information and learning about this new treatment.
This is the journal article my doctor read that inspired him to go ahead with this treatment. It’s definitely a hard read but if you wanted to learn more about this treatment, this is a good place to start.
Also, at the top of this post I’ve included the link to my YouCaring page, since I no longer have the gofundme account. Please take the time to check it out. I’m going to try to be diligent in updating it for anyone who donates or shares it.
Really there’s no amount that is too big or small and I get 100 percent of the proceeds. If you are unable to donate, if you could please take a second to share the link with your friends and family I most certainty would appreciate it!