Tired Being Tired and Psuedonyms

Nothing really new to report.  Pam went through her second infusion of Rituxan this past Friday.  (Thanks to Joni for taking her to the rat maze and keeping her company for me.) She seems to be tolerating the infusions just fine, except that she is complaining of even more fatigue than normal...

Naturally ... 

... so I looked up the side effects of Rituxan in the small print, and sure enough, "tiredness" is listed as one of the most common.

Just what Pam needs, but there is no real choice in the matter.  It is a choice between the side effects and developing lymphoma.

She is "tired of being tired".  I am tired of her being tired. I am tired about talking about being tired and tired of writing about being tired and trying to come up with new ways of saying tired.  It is tiring.

Pub Crawl

From the Left:
Steve "Virtch" and Candy Virtue
Paul "Bruno" Wakagawa and Jackie Wakagawa second from right
Steve "Boogie" with Debbie Wilkins on far right
Connie and Lynn "Buzzard" Call in the middle
Brian "Mort" standing behind Tina West third from right

I went to a pub crawl organized by good friends Mort and Tina West.  I had a great time visiting with some old friends. As much fun as it was, I felt a bit like a 5th wheel without Pam. Looking forward to next year already when she will be able to go.

The guys in this picture are my fraternity brothers.  Although I don't believe any of them are in trouble with the law or anything, they all have nicknames, just like the Mafia.

They also all married up.

Good PET

Good news... the PET scan completed on Monday does not indicate any other "pre-lymphoma" cells other than the ones found in the biopsy of Pam's tonsil.

All of these meds...
what could go wrong?

So, in a nutshell, here is my understanding:

The abnormal cells that are a precursor to a lymphoma in Pam's tonsil are a side effect of being on the immunosuppressant medications that she needs as part of the stem cell transplant.  If it were not for the immunosuppressants, her new immune system would go crazy and attack everything in site.  These abnormal "polymorphic" cells would not have appeared otherwise.

The obvious question:  "Since the PET scan just shows abnormal cells in the tonsil, why don't they just yank the tonsil?  After all they do tonsillectomies on 5 year old kids all of the time, right?"  Two reasons: The ENT specialists at OHSU are reluctant to do any surgery however minor because Pam is still on immunosuppressant medications, meaning she is slow to heal and more prone to infection. Also, even though the PET scan didn't show any other sites for abnormal cells, that is no guarantee, so they would elect to treat her with Rituxan anyway. My elementary understanding is that the Rituxan "tags" the abnormal cells so they are easily destroyed by Pam's new immune system.

So, the treatment is 4 infusions of Rituxan at the infusion center at the Rat Maze. Pam's first infusion was yesterday, and it went very well.  There is a chance of allergic reactions, and they do the first infusion very carefully and slowly after doping you up with some pre-medication which includes Benadryl.  So, for Pam, other than getting very sleepy, it was no big deal.  We were in the clinic at 8 AM and she was out at 2. I am guessing that they will do another biopsy of the tonsil sometime after the infusions are completed.

Big Night on the Town

Some of her other immunosuppressants are now being tapered, and she is feeling better already:  she has more energy, a little less shakiness, and is getting her appetite back.  After some prodding, she walked a couple of blocks with me to a local pub for dinner. Other than trips to the doctor, it was her first time out of the condo for a long time.

The next big event is getting a new bone marrow biopsy. That is typically done one year post transplant, but has been postponed because of the recent excitement.  I imagine that will be scheduled within the next month.

I have a more basic treatment plan in mind:  Now that she is beginning to feel better, I am going to try to get her out of the condo for a walk every day, even if it is no further than around the block. Wish me luck.