Only had an INR blood test for the blood thinner, next CBC and other blood tests schedule for Friday of next week. Then meet with the doctor on Monday May 23rd.
Yesterday Jane and I spent most of the day at Rush University Medical Center, we had an appointment with the doctor and nurse coordinator to go over a list of questions I had comprised. Our appointment was at 12:00, though I was told to arrive at 11:15 for vitals before we meet. I met my end of the bargain, despite the traffic and going to the eighth level of the parking garage I checked in at 11:16, pretty good. We sat in the waiting room, and sat and sat; the time was 12:30; then shortly the nurse coordinator came out to get us. The doctor had another meeting so his time was limited. The nurse coordinator looked over my list of questions and had the doctor answer the questions she felt she could not answer, then the doctor was excused to go to his meeting. Don't get me wrong, I am not really complaining, the nurse coordinator was able to answer the rest of the questions and was extremely knowledgable. She spent over 2 hours with us and I am sure the time she spent with us might have made her late to other appointments she had. So I can understand why she could have been late for our appointment. I had over 50 questions in an organized document, anyone who knows me well knows that I am a highly detailed and organized person. I spend so much time analyzing and researching, I am continually finding more information to read.
I will highlight a few questions:
Stem cell collection
Question
The standard is to collect enough stem cells for 2 stem cell transplants, which is about 4 million total. I wanted to know if they could collect more and if there would be a benefit to this. My fear here is I have read once I get the high dose chemotherapy stem cells cannot be collected
Answer
The doctor stated stem cells only have a shelf life of 10 years. He also reassured me that in 5 years they could recollect even after the high dose chemotherapy.
Vaccinations
Question
Do I need to be concerned if Lexie just received the chicken pox vaccine or if my niece or nephews have vaccines?
Answer
Chicken pox vaccine is not a live vaccine and there is no concern. What I took away from this is as long as the vaccine is not a live virus there is not a problem. Though I was told I will need to be revaccinated in a year after the SCT.
Hospital Visitors
Question
The hospital sent me information that stated the ward I will be in cannot have any visitors under the age of 12. Lexie is 10, almost 11 any exceptions?
Answer
No exceptions, and the reason why is very understandable. The point that was made is that Lexie might have virus's that I am immune to, but the person one room over might not have that immunity. When Lexie comes to visit she will wait in the family room and I can come out to see her once I suit up with a mask, gloves and gown.
That is just a small sampling, there were many more questions. Probably one of the more important questions was will there be 3 or 4 cycles of induction therapy and what is the schedule for the SCT?
The doctor stated there will be 4 induction cycles, even with my good response. We are just going to keep hammering the bad cells out. So with that information we have a very tentative schedule.
| Tentative Date |
Step |
|---|---|
| June 13 | Bone Marrow Biopsy Skeletal Survey 24 Hour Urine Test Labs - Complete Panel |
| June 17 | Muga Scan Pulmonary function test Chest Xray EKG ... |
| July 7 | Line surgically implanted in my chest |
| July 8 | Start Neupogen Shots - These shots are self administered and cause the body to start producing more stem cells. I was told these are $23,000 a shot, thanks goodness for insurance. |
| July 11 | Mobilization Shot - Tells the stem cells to leave the bone marrow and move into the blood stream |
| July 12-15 | Stem Cells Collected |
| July 18 | Office Visit |
| July 20 | High Dose Chemo |
| July 21 | Admitted to Hospital |
All of these date are very tentative and will most likely be refined or changed, but the steps will most likely be the same.
As I stand here reading this I am shaking my head. I know I was at the meeting yesterday and heard all of it. Still, I can't fathom what you are going through and will be going through. You have been amazing throughout. I love you!!!
ReplyDeleteIt still doesn't seem real - I know to you it is very real. It's just that when we see you, everything seems normal, until we hear about the blood counts and tests. I don't think anyone could really understand what you are going through unless they have been through it themselves. We can only imagine with so many tests and procedures... When they start taking the stem cells, do you go to Rush for those 4 days? Are you in and out?
ReplyDeleteWhat's a Muga scan?
How long is the transplant procedure? Is it just the injection of the cells? Are they still anticipating 2-4 weeks in the hospital?
I wish you guys could have joined us for breakfast on Saturday, but I understand. Stay germ-free. Positive thoughts coming your way!
Love Steph
Steph,
ReplyDeleteIt doesn't seem to real to me at times either, I really don't feel to bad. The drugs haven't been terrible, I am used to having a needle stuck in me a couple time a week. Reality will set in the during the next couple months. I been talking to a guy that lives on California that is about the same age and went through a stem cell transplant, his comment was it was anticlimactic, I am hoping to have the same results.
Yes the stem cells are taken at Rush on outpatient. If my body cooperates might be able to get them all in one day.
A Muga scan checks the heart function, don't know much more beyond that right know.
The actual transplant is just the injection of the stem cells back into my body, almost like a blood transfusion. This occurs in a matter of hours. The hospital stay, is to wait from the stem cells to make their way back to the bone marrow. During this time my platelets, red and white blood cells will be low and need to be monitored. Extremely vulnerable to any type of infection. They are telling me the hospital stay will be about 2 weeks.
Breakfast, I wanted to go, but figured Saturday at 9:00 they probably would be busy, probably over cautious. Every week we go to church we sit in the back to stay germ free, and just about every week someone who is sick sits in front of us, blowing or picking their nose. What to do when they turnaround for peace? Hand sanitize!! I am starting to get out more this week, went to the grocery store and target over the weekend, though Jane won't let me open doors or touch the carts....