Another mini-trip to Dana Farber is wrapping up, hopefully.
I’m always skeptical about announcing that I am going to be discharged. There are too many variables in the process, too many “what ifs,” and too many possible problems that could occur between when I receive word that my discharge plan is for today and when I actually, physically walk or wheel out the door into independent territory.
I am finally at a place where I am no longer scrambling for the door, rushing discharge.
I’m accepting my surroundings and enjoying them as much as possible.
The staff here at Brigham and Womans, where the inpatients sent by Dana Farber are housed, and the team from Dana Farber have been fabulous and have done all they could to make the stay as smooth as possible.
They have worked hard and well together to collaborate for my needs, such as the many, many medications I take to symptomatically control my graft vs. host.
These are sometimes notoriously difficult to get from the pharmacy and it does require some patience on the patient’s part. My restasis, the cyclosporine drops for my eyes, the decadron mouth wash, and the bentomycin lotion were all part of the problem meds.
I shouldn’t even call them “problem meds” though, since they are as needed medications to help me continue to be as comfortable as possible in the management of my post transplant GVHD.
Everybody has worked so well with me, helping me to obtain all the medications necessary for my comfort, but also in working slowly, patiently, with me towards eating again at a pace guided by signals sent from my body.
Again, we are all not sure exactly what the problem I was admitted for was. It is being labeled a gastroenteritis.
I received levaquin (an antibiotic) intravenously for the infection I definitely had, since I spiked a fever of 101.6 as one of my presenting symptoms.
It is a possibility, and what we’re assuming, is that the major breach of my diet by deciding to include a McDonald’s crispy chicken ranch BLT with a full large order of fries and some left over (but within the general safe time limits for seafood, 24 hours) seafood chowder was probably a little too much fat for my liver, and body, to handle and digest.
One of the theories behind my strict diet is to protect my liver from having to do anymore work than necessary during the breakdown process.
The breakdown process includes “enzymes,” which play the primary role in dismantling the food into it’s different purposes.
However, without using these enzymes consistently, theoretically your body starts to do away with them all together.
The body, the all-time, super power machine, evolves realizing that things such as, in my incidence, processed foods, excessive fats, red meats, dairy, heavy creams, etc., are no longer being ingested and no longer need to be digested so the enzymes disappear.
This is why vegetarians may feel sick after their first bite of a hamburger. Their body has purposely forgotten how to break down the food, and this causes the person to feel ill, wanting to get rid of what the body feels is now a nasty, foreign substance.
I think this might have happened to me. I decided to have a diet cheat day in a big way and my body decided to revolt in a big way and say “hell no, that does not belong in here.”
My body said it loud and clear with sweats, fever, vomiting, and severe abdominal pain.
It is all part of this great nutritional theory though. Whatever I’m doing seems to be working. My body is rejecting unnatural food with violent reactions to keep me in line.
Scientifically, my liver enzymes have normalized!!
Here is a possible, proven, scientific reasoning for the decline in my liver enzymes to normal levels: it could be the prednisone working its magic.
With my graft vs. host disease more undercontrol, the pressure on my liver to perform is not causing the dire stress that resulted in the increases of the enzymes.
However, I have been giving my liver a lot of love.
I am using acupressure and chiropractic to gently guide my liver into functioning at it’s maximum healthy capacity with the assistance of Dr. Klemas at Charlestown Family Chiropractic.
I missed my weekly appointment due to the sudden hospitalization. I’ll be calling to make it up.
I massage a space at the base of my neck. Along with all the scientific areas of studies that have interested me throughout my life is that of phrenology.
Phrenology is the study of reading heads. It states that the shape of a person’s head can give great insights into their personalities.
Believe me, this is just plain old fun knowledge to have when you need to spend time in the cancer center where bald head after bald head passes you by.
I’ve thought on many occasions how much fun it would be to have a phrenologist hang out by the waiting room so patients can consult them while in between appointments.
Some people get their palms read, sometime massages are available, I say bring on the head reading.
And yes, I studied this long almost lost science/art since junior high as part of my understanding anatomy for art phase.
Now, I rub a special area at the base of my skull to stimulate the liver.
I’m just giving my liver some much deserved love. It’s a resilient organ, but in my case it needs all the help it can get.
Yesterday, I was finally able to ease some food in, starting with fruit juice and broth (clear liquids) which did incite some nausea that had to be treated.
I stepped back. Took a nap. Did some work. Enjoyed great company. Thanks for visiting Heather and Killy! I’m lucky to have you near by.
Also Carol Orichio, the stem cell transplant inpatient case manager stopped by. It was exciting to see her again. She’d apparently googled herself during a period of her own recovery and found her name on my blog!
I was worried I was in trouble for a second, but couldn’t imagine I had said anything negative. She was featured in a posting regarding how patients can access services when first coming to Dana Farber for treatment.
She came with a great poster outlining the role of case manager and the roles of all other professionals within the hospital and how they intertwine for collaboration.
She certainly did a fabulous job, and if I didn’t say it before, I’m saying it now, The Transplant Team here is lucky to have her.
Hopefully, at some point, I will be in a position to work alongside her and the others who have treated me so well.
That, of course, will only happen after I’ve completed my own medical journey (or Germany) into a lasting remission.
At least for now hopefully I can be used as a guidebook patient case study. I hope I still have that too offer.
The plan for today is to relax, continue eating gentle healthy foods, like a garden salad, fresh fruits, a turkey wrap with lettuce, tomato, and hummus with lots of water and cranberry juice to drink.
I’m keeping the gingerale close by my side too.
Then Melissa and Dr. Alyea will swing by to see me so I will not have to go to our previously scheduled appointment tomorrow, and life will return to my own personal normal again.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."