The Newlywed Game

I loved the beginning of The Newlywed Game.  I loved watching how the seats swiveled and swept into the room like 20th century white latticed chariots.  It was a very inane game show, with silly questions, but it was fun to watch.   In the game, newly minted husband and wife pairs were separated and spouse #1 was asked a question and to which they responded in writing on a large card.  When spouse #2 returned, they were asked the same question and their answers were compared while spouse #1 held up his or her outsized card with their own written response. If their answers matched, they kissed.   The point was really to give each couple many excuses to kiss each other on tv.   Ah.  Life was so simple.

One time the husbands were asked what was considered to be the sexiest part of the human body, by some type of survey or research.    I impatiently awaited the answer.  Apparently it is one's hair.   Hence the overwhelming number of shampoo commercials. 

I thought back to that show when I learned that I will be bald this summer, as a result of my Bone Marrow Transplant (also referred to as a Stem Cell Transplant).  There is bone marrow in the skull which is why Multiple Myeloma patients can't use a cold cap.  Apparently the bone marrow in the skull has secret passages that lead into the brain (see link below) as well.   Cold caps can be worn by some cancer patients to keep chemo from circulating around their scalp.  By keeping the head cold, the work and therefore the damage done by certain chemo drugs will not get distributed to the scalp and hair follicles will therefore not be damaged.  Cold caps can limit or eliminate hair loss.  This works for cancer patients who don't have a problem with their bone marrow, but MM patients cannot use them. 

There are many aspects of the transplant that terrify me, mostly the idea that I will not have an immune system for the rest of 2022.  I will be able to see my brother and my eldest daughter who will be living with me (God bless them), but otherwise I will not be able to see other friends and family until the end of the year.  My youngest will have to go to college without me there to settle her in.  My son will settle back into his college without a visit.  

I will lose a virtually all muscle mass because of the transplant chemicals.  I will lose my hair and possibly my eyebrows and eyelashes.  

I won't pretend that I am not vain, of course I am.  I don't know many people who aren't.  This demolition of my physical self brings a whole new level of sadness, shock and humility to my life.   But then there are amazing women who rock the bald head; Ayanna Presley, Jada Pinkett Smith, you are my heroes. 

I do have my eyesight, though, and I can see spring.  I have my hearing and I can hear birds at 7 am (on the rare occasions I am up that early).  I have my legs so I can walk with my friends each day.  I do have arms so I can still give and receive hugs.  I have a roof over my head so I am rarely cold.  I can afford groceries and medicine so I am lucky.  I have beautiful friends and family who make me feel loved. I have a sense of humor so when I think of the summer ahead,  I imagine the bald face on my children's game that was given a beard and mustache or hair thanks to their magnet and some steel shavings. 

I wish I had some inspiration to pass along, but I feel pulverized at the moment.  I hope that some of this information (below) might be helpful to others.  

I approach this event with a great sense of practicality.   My guess is that planning will be the only way to be prepared for these changes.   Below I have listed what I have learned in this part of the process with the hope that it may help someone else going through it.  Please leave comments if you have any suggestions to add.   Please send questions if you have them. 

I'm sending you many wishes of love, warmth, sun, peace and good health. 

Bone marrow from skull to brain:

https://www.alzforum.org/news/research-news/tiny-passageways-connect-skull-bone-marrow-brain

Preparing for hair loss: 

https://www.cancercare.org/tagged/hair_loss

https://www.headcovers.com/blog/american-cancer-society-wigs/ (American Cancer Society online store link is here) 

Hats and Scarves:

https://www.tlcdirect.org

https://www.cancercare.org/publications/287-hair_loss_during_treatment_finding_resources_and_support

Preparing for muscle loss: 

- sign up some mask wearing friends to take walks with you outside if possible

- rent or buy an inexpensive treadmill or machine to keep inside in case of bad weather or for night time exercise,  weight bearing exercise will help support bone strength as well

- lift weights; they don't need to be heavy but this will help your bones and your muscles

- just move a little each day, it will help your body get strong

Preparing your body for the stem cell harvest and transplant: 

please read what the pros say, but in general: 

- drink a lot of water each day (64 oz)

- no alcohol 4 weeks before the stem cell harvest and 4 weeks after the bone marrow transplant (at least)

- stop blood thinners, vitamin E, Tylenol, ibuprofen, aspiring 2 weeks before 

- no eating or drinking the day before the harvest, small ant of water up to 2 hours before the appointment time

https://www.mskcc.org/cancer-care/patient-education/bone-marrow-harvesting

https://ocwellnessphysicians.com/alcohol-prevent-stem-cell-treatment/

Foods to avoid during periods of very low immunity (first 100 days): 

I thought that I knew this: no sushi, no raw eggs, no raw food, but in the "NO" column you can also add: 

- deli meat (someone touched it?)

- sprouts; any and all kinds

- smoked salmon 

- re-heated leftovers; never heat leftovers more than once and NEVER re freeze raw meat that has been defrosted

- unpasteurized honey, milk, etc. 

- probiotics

https://www.mskcc.org/cancer-care/patient-education/eating-well-after-your-stem-cell-transplant

To prevent loneliness during period of low immunity: 

- start collecting a list of movies that you have always wanted to see

- make a list of books that you have always wanted to read and make sure that you have dowloaded libby, overdrive or your local libary's digital library access to your phone and iPad

- organize phone calls once or twice per week with good friends or family members

- send emails and texts to those you love.  They always write back. 

A Note to Spouses/Partners 

This is your time to show what you are made of.  Your spouse is scared and worried that they will no longer be beautiful in your eyes.  They need to feel the greatest amount of love, support, warmth, admiration and care that you can muster.  Ask them what love and support means to them and do it their way.  Feeling that someone values their opinion and honors their needs will make them feel empowered and give them the greatest chance of survival.   

This is what "in sickness and in health" means.   They need you to do it their way now.  If you don't feel that you are up to the task, get your own support so that you can be.  

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