Made of “Good Stuff”

Last week I had an appointment with my neurologist, because you know, I don’t go to enough doctor’s appointments!  Actually, I had to go because the stem cell harvesting process gives some people migraines, which I do get. Typically I handle my migraines with a combination of tylenol and advil. However I am currently not allowed to take advil, so off to the neurologist I went to get a prescription for migraine medicine, just in case. (Turns out I did not need it, I got a few headaches but no migraines.)

I have sen my neurologist on and off for over 25 years, she comes highly recommended from a doctor friend of mine, is Ivy League trained and I have always found her thorough and a very good clinician.  She is a little but, I don’t know, eccentric.

I had not seen her since being diagnosed with multiple myeloma, but she is the one who discovered my olfactory cortex meningioma (see Incidental Findings). So after a long review of my past and more recent medical history, a physical examination, etc. (everything neurologically is fine!). She sits across her desk and looks at me and says, “You know, you look really good.” I reply, “I know, everyone says that – nurses, medical assistants, doctors, specialists, attendings in the hospital, everyone.” She says, “I don’t think you know what they mean. Some people are made of bad stuff and they get sick and they look bad, but you’re sick and you look really good, you’re made of good stuff. I think you’ll be o.k.”

So after a not very technical evaluation, I guess that’s a good thing, I just might be made of good stuff, even though I have bad stuff going on.

My good stuff best be there for me as I approach the coming weeks. I have learned something recently, mostly talking to nurses (nurses are da’ bomb, by the way, so full of great information). The “stem cell transplant” is not actually the treatment for the cancer.  The treatment, to get rid of the cancer cells in my blood is the two days of high dose melphalan. This will “kill” both the bad cells in my blood as well as the good cells, hence the need for the stem cells. The stem cell portion of the treatment is actually called “peripheral stem cell rescue”. The stem cells come in to save the day and get your blood counts back into a normal range.

There are other side effects besides the low blood counts: nausea, vomiting (maybe for longer than the hospital stay), diarrhea, mucositis (sores along the digestive tract), heartburn espohagitis, risk of infection and fever.

This is the schedule:

Saturday, June 13th (afternoon or early evening: Admission to Brigham & Women’s Hospital
Sunday, June 14th (Day -2): First melphalan dose
Monday, June 15th (Day -1): Second melphalan dose
Tuesday, June 16th (Day 0): Stem cells reinfused

And then recovery in the hospital Days +1 through +14.

Days +6 through +10 are likely the days I will feel the worst.

Day +5 neupogen injections start and about a week later my white blood cell counts will start to climb as my stem cells mature.

Day +14 is my potential discharge date (June 30th). And then it is home where “the bulk of my recovery will take place” with diet restrictions for 30 days after discharge and infection control restrictions for 90 days after discharge.

Everyone’s side effects and recovery are different.

Here is to my “good stuff” doing it’s thing!

Cups, Liters, Hours and Millions

The first day of the stem cell harvest started with the placement of the Hickman line under conscious sedation. Not too bad, I felt like I was aware of almost the whole thing and it felt like it took about 10 minutes, but it took an hour, so clearly some of the anesthesia “did it’s thing”.  

After a few minutes in recovery I walked to the Kraft Blood Donor Center, which is a funky little area of Brigham & Women’s Hospital. It is small and filled with New England Patriots memorabilia including  a wall papered with a shot of Gillette stadium. The space made my Boston-raised friend Alison very happy. It had a more relaxed atmosphere. the clinical receptionist making corny jokes and the nurses very cordial and occasionally very chatty. 

The process of apheresis is completely pain free. They simply hook you up to a machine from the two pronged central line, blood going out from one and coming back in the other. 

  
I asked how long the day’s process would take and was told it depends on your blood volume. They want to process your entire blood volume through the machine. Your blood volume is calculated based on height, weight and sex. Mine is calculated as 5 liters. Which takes about 5-7 hours. 

As I was laying there attached to the machine I asked how much of my blood was outside my body at any one time. The answer: about a cup and a half. 

  
At the end of the day the machine returns all of your blood remaining in it back to you. It’s all a little strange and a tiny bit gruesome, but not if you don’t think about it!

They weren’t able to complete my blood volume because we got a late start (Hickman line placement) and stopped at 4:00 after about five hours. They were encouraged about what they would collect based on my morning blood work showing a lot of stem cells floating around. And at 8:00 pm I got the call that they had collected 5.8 million of the 8 million stem cells they need. 

So we’ll get an early start today and hopefully be home Wednesday morning. 

The last two hours of the day yesterday consisted of lengthy discussions of food, restaurants and transit optiobs with the nurses. They were very excited to help us plan. Alison was pretty sure they wanted to come with us! 

So after finishing up In the blood center we walked to Brigham Circle, took the T and walked through Boston’s Public Garden. We had a lovely dinner at Toscano in Beacon Hill. It was good to walk after a day of laying around. And it was good to eat out as I countdown the last few days until my confinement.