I didn’t get a picture of my marrow, but this gives you a general idea of what goes on in there.
Back to See Larry
I forgot to mention it yesterday, but I needed to get another Bone Marrow Aspiration (BMA). Not for fear of relapse or anything like that, but instead I had to do it as part of the transplant protocol. Transplant protocol requires a BMA within 30 days of admission to show that you are in remission. Granted, you can transplant even when you aren’t in remission, but they prefer you to be in remission. My last BMA was 8/24. My original transplant admission was 9/22, so that was within the 30 days. My new admission date of 10/9 is not within the 30 days, thus another BMA.
Having Dr. Cripe drill into my hip wasn’t exactly the way I wanted to reunite with him. Granted, it was still good to see him. He even made a joke about my fanny. Yes, Larry cracked a smile while making a butt joke. Good to see I’m rubbing off a bit. I’m not sure why it never occured to me before, but I’ve never actually seen my marrow. So this time when it was all done, I asked to see it and was able to look into a bloody petri dish and see little specs of marrow. This is my 6th bone marrow aspiration and this one didn’t seem to hurt as much. That might just be because I’m getting used to them or it could have been the oxycontin and ativan I took before my appointment. Tough to tell really.
Fall is a Lovely Time of Year for a Transplant
Donor #2 has come through! Now he just needs a name. There are some who wanted to make a play on the whole “number 2” bit when naming said donor, but I think that was a pretty crappy idea. Even though humor runs in the family, some still strain to be funny. While my humor comes out rather easily, others must sit awhile to get theirs out. Rest assured, you won’t see any nutty names for Mr. Donor as it relates to “number 2”. So what will donor #2 be called?
Dominick the donor, aka Dom, aka Donor Of Marrow. Dom has agreed to give his cells to little old me. I will be admitted on October 9th and the transplant will occur on October 16th.
The Slightly Altered Transplant Plan Because I’m getting admitted on a Friday, the schedule has changed a bit. Originally I was going to get 4 days of radiation first and then chemo. Now I am getting the chemo first since they don’t do radiation on the weekend. I’ll get a high dose of Etoposide, which has all the fun side effects of chemotherapy. When you read up on Etoposide, there are a list of side effects and the author tries to reassure you that some of the side effects only happen in higher doses. Well, that’s me. Mr. Higher Dose.
I’ll also get a central catheter placed on the 9th. This one will be a bit different from the PICC, as it will be under my collar-bone and come out of my chest. It will still have 2 lumens so that I can receive multiple infusions at the same time. It will be placed while I am under sedation, so the 9th promises to be a loopy day.
I’ll rest on Saturday and Sunday while the chemo does its job and then I’ll get radiation on Monday through Thursday. Again, it will be a morning and afternoon session each day. Then on Friday they’ll bring in a bag of blood that contains my new stem cells. They’ll hook it up, pump it into me, and then we’ll wait for the little stemmies to burrow into their new home in my bones and start producing blood cells.
No New is No News
Since I found out we are pursuing donor #2, nothing has really happened. I know Dr. Cripe and Dr. Nelson have been in contact, but no determinations have been made. Perhaps on Monday I’ll find out if I am going back on Blinatumomab or staying off. As for the donor, we haven’t heard anything back yet. Cheryl said that after she made the urgent request, the people on the donor’s side would contact the donor and they have to go through an information session on donation. We don’t hear back until that session is complete and we don’t get any information on when that session might occur. So for now it’s just hurry up and wait. Hopefully this week brings more news.
Long Term Disability
On the plus side of things, I did find out that my long term disability has been approved. The company still needs some medical records, but the payments themselves have been approved. That’s a big relief. I’ve learned a lot about disability over these past few months, so here are my tips for those of you at home:
First off, sign up for both short and long term disability. I can’t imagine where we would be if I didn’t have disability insurance. Even with my payments, I was sure to sign Lindsey up for both STD and LTD when she went back to work part time. On top of that I signed her up for critical illness and a hospitalization policy. Chances are you won’t ever need them, but when you do need them, you REALLY need them.
It sounds kind of odd, but you do NOT want your employer to pay for your STD and LTD premiums. If your employer pays for them, then your benefits are taxable. If you pay for the premium, then you do not have to claim the STD and LTD payments as income. This can make a big difference as STD and LTD typically pay 60% of your salary/wage. If taxes are then taken out of that 60%, you may only be getting half of your pre-disability income.
Talk to your doctor or nurse about the forms that need to be submitted. You are your best advocate throughout your disability. You want to know what is being said and have the opportunity to correct any mistakes. It’s much harder to correct information once it’s in the hands of the insurance company.
NPS and CSAT
At hc1, we use the Net Promoter Score (NPS) as a gauge of customer loyalty. I was reading a bit more about the NPS score while I am off (you know, because there isn’t much going on) and came across the CSAT score which is a gauge of customer satisfaction. As I investigated CSAT more via google, I saw a link about becoming CSAT certified. This seemed like it might be a good thing to do while I’m off since I have some time on my hands so I clicked the link. Ya, apparently CSAT isn’t just an abbreviation for customer satisfaction. The linked I clicked was to be trained as a Certified Sex Addiction Therapist. While I’m sure the course material would be rather interesting, I’ve decided to not pursue my CSAT certification at this time.
IU Health Must Miss Me
Prior to the delay, I was going to be admitted on 9/22. So it was with much curiosity that my ringing phone showed an IU Health number on Saturday the 12th. The person on the other end was asking if I was supposed to be admitted on the 12th. Apparently that was the date that was written down. I explained that I wasn’t going to be admitted until the 22nd and it was probably just a mistake. And then 5 minutes later the phone rang again. Different person, same question. So I gave the same explanation. I thought all was resolved but later in the day I received another call from a nurse at the transfer center, “Did you know your doctor wants you to be admitted to the hospital today?” Again, I gave the same explanation and thankfully this was the last call. I’m not sure how the date was entered incorrectly, but thankfully I know enough about my own care to know that I wasn’t supposed to be admitted. I could very easily see someone hopping in their car and driving to the hospital when receiving a call like this. Who knows what would happen then.
One Day I Will Work Again
This past Thursday I stopped by the office to say hello and check in. It was great to spend a few hours with everyone. It was also great that it was only a few hours, as I was tired by the end of it. One thing that crossed my mind while I wait for a donor is “could I work a bit.” I think right now that answer is no. My main lingering side effects, aside from fatigue, are a mental cloudiness and finding the right words. I could definitely sense both were happening while I was speaking with people, even if they didn’t realize it. My job requires a high level of mental acuity to keep track of many moving parts that are handled by many different people. Right now I’m just not there. I was able to have a great conversation with my boss, Esther, and we plotted out a potential timeline and plan for getting me back to work. I’m still many months away, but I do look forward to being back in the office.
A Duck Dynasty Prayer
Limbo. It’s not just a dance you do with a stick. It’s where I feel I am at right now. But there are things to learn in limbo. I thank you for patience and perseverance. I thank you for time with my family. I thank you for a process that is taking place to get my stem cells. I may not see the process, but it is happening. That is a parallel in so many ways to how you operate in our lives. Things are happening. You are working. We don’t always see your hand. But it is there. I’m thankful that I know we will get to transplant and I’m hopeful for the days that follow. Thank you for another day.
Thank You For Another Day 