The Port and The Harvest

Back home after a week in NYC having a catheter put in my chest + a week of stem cell harvesting.  Unfortunately the stem cell harvest was not as successful as the doctor had hoped as I could only harvest approximately 5 million stem cells (measured per kilos of body weight), instead of the 10m desired.  The first day, I harvested approx 2.68 million stem cells, 1.68 m on day 2 and 1.21m on day three.  I had a different technician on day 3 who modified some parameters of the collection machine which is why I think that I had a proportionally higher collection that day (the expectation was for a more linear decrease, putting day 3's expected collection at approx 900k million cells that morning). 

I must wait three weeks for my body to regenerate stem cells ("SC"), I will return on June 6 to have (hopefully) the remaining 5 million cells harvested that week.  In that case, the stem cell transplant will begin on June 15.  

Each transplant requires approx 2.5 million stem cells to be harvested as some are lost in the cleaning and freezing process.  My doctor wanted to harvest enough for  4 transplants, which is about average.  Apparently after the transplant my body will not be able to generate stem cells in this quantity, and of this quality, which is why they are harvesting for the future before my upcoming transplant. 

It is important to know that if you are having a stem cell harvest, it is not painful in anyway, but it is tiring.   

The people that worked in the hospital were delightful, friendly, kind and helpful.  I feel so lucky to live where I live. 

WHAT I WISH I HAD KNOWN IN ADVANCE 

- not to be alone while in the hospital (had a friend with me for the catheter placement and one day of SC harvest, but would have been happy to have had someone with me for all harvest days) 

- how delightful it was be to be picked up from the hospital and driven home at the end of the day (I felt so lucky for this!)

- the SC harvest room is FREEZING! I honestly wish that I had had a hat ;0.  I had about 5 blankets on me and some warm packs and I still caught a terrible cold --dress really warmly.

- I can no longer sweat! the port is covered with a 3x2 inch square of skin tight plastic, which means that when I sweat, nothing can evaporate, so my skin itches like crazy. I wish I had worked out more before getting the port placed.  I avoid sweating now when I sought it before. 

- bring your own food(!)  I wish that I had brought some food from home; fruit, vegetables, anything.  I was too worried about germs to have eaten from a restaurant or the cafeteria, so consequently I didn't eat well during the week and lost weight and a little more muscle mass

- chemo might affect SC harvest collection.  Because of my chromosomal abnormality, I had stronger induction therapy (KRd) than lower risk patients (who usually have RVd).  According to the doctor's assistant, this may have been why my collection was such a relative failure.  They could not explain it otherwise.  I don't eat much fat or sugar, I don't drink or smoke, I walk an hour a day and get good sleep (all the things recommended on the internet, if you were to google it).  

- Mozobil gave me headaches. I'm not a headache person, so I'm always sensitive to meds/other things that  give me headaches. Mozobil is the injection I received at the end of each day to coax the SC out of my bone marrow. Each morning I gave myself injections of Neupogen to increase the amount of SC in my marrow. 

- sweating makes the catheter area itchy. Sorry this is gross, but the catheter has a very air-tight, skin tight plastic on top of it to keep all bacteria out since the catheter is a main line into my blood supply.  If I walk or do anything that makes me sweat, it gets very uncomfortable and itchy under the bandage as my skin is probably sweating, yet the sweat can't evaporate.  I love having this bandage changed, which happens once per week (I had it changed twice last week).

A note to spouses/partners

Your presence in this process will be intensely appreciated, but it is important that you take care of yourself.  Bring food for you and your partner.  Take care of yourself and eat and walk around and do whatever is necessary to keep yourself balanced and sane. Read the news and tell your partner what is going on in the world (easy to lose touch with reality in the busy pace of this challenge).   Your being there will feel like an honor and privilege to them.  If you can drive them to and from the hospital or organize an Uber, taxi, etc. it will also feel like a great privilege to them.  Bring questions about the harvest and transplant process that you may want to have answered as you will likely meet members of the hospital staff who can answer them and help you prepare. 

Peace,  love, warmth and good health to all. 

Apologies if this is dry and boring, 

I 

Am 

Exhausted. 

Maude - if you see this, kindly send me an email. I could not post a response to your msgs.  Thank you.

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