Mary's blog 4 healing: November 2023

Monday, November 20, 2023

Drain, drain, go away

I am two weeks into my clinical trial now, and the chemo is not the worst part. The thing that is more aggravating right now is the chest drain that was put in three weeks ago. I had been having some fluid buildup in my chest before the chemo started, but since the drain has been in, that seems to have stopped.

So now I am waiting to hear from the pulmonary folks at the Ohio State University Wexner Medical Center that I can get the drain removed ASAP. I had a chest X-ray this morning that hopefully will show there is no fluid hanging around to justify keeping a tube in my chest any longer.

As for the chemo, I am getting into the rhythm of how that is affecting me, and it's not horrible.

The best part, if feeling a little bad can be good, is that I seem to be seeing some side effects of the chemo pills that I take every three or four days. I'm taking that as a sign that they are the real deal, not placebo pills. So, yes, I actually welcome feeling a little lack of energy and some intestinal distress for a day after I take the pills if that means I am throwing more live ammunition at my sarcoma and not duds.

Among my many blessings, I am thankful for the medical attention I am able to receive at OSU and The James Cancer Hospital. It is good to have sarcoma specialists in our backyard and access to a clinical trial dedicated to fighting leiomyosarcoma, the particular kind I have.

And I am more blessed than you can know by the expressions of love, support and prayers that I receive in comments to this blog and on Facebook. They lift me and give me strength.

Please know that if you do comment on this blog, most comments show up as "anonymous," so leave your name if you would like me to know who you are.

Best wishes to all for a wonderful Thanksgiving!

Thursday, November 9, 2023

Believe!

My clinical trial has begun, and now we have to believe that I am getting the very best medicine I can to fight back and send sarcoma packing.

TC made sure we have a very visible reminder of the power of positive belief, and belief in all the prayers that we know have been and are being offered up for my health. He surprised me last week with a framed copy of the iconic Believe sign from a TV series that we both loved, Ted Lasso.

Ted Lasso's English football (soccer) players would tap the sign over their locker room door every time they went out to play. It didn't always bring immediate victory but they did learn to believe in each other and themselves and in their common pursuit. In the end, that belief was transformative and real.

Our sign hangs above our monthly calendar -- the one now filled with medical appointments and medicine reminders -- just on the way out the door to the garage. We tap it multiple times a day, even at times when we're not leaving.

So far I am tolerating the chemo well; just hope the sarcoma is not.

And after a couple of weeks of having difficulty speaking without catches, I have finally regained my voice, thanks to getting fluid drained again from between my right lung and diaphragm. A temporary drain put in on Monday should keep fluid from accumulating to a troublesome level.

We're hoping that this new regimen of chemo infusion every three weeks and oral (hopefully real and not placebo) tablets every few days in between will give us some nice respite by slowing down what have been too-frequent visits to The James.

With all your prayers, best wishes and positive thoughts coming my way, how can we not believe?

Sunday, November 5, 2023

The next journey

TC has brought so much music into my life. Music is important to him, and it endears him to me.

One of our most memorable musical journeys was four years ago. We had been dating almost 16 months when we went to Toronto to hear a favorite musician of his that I had also come to love -- Loreena McKinnett. She has an enchantingly clear voice and her shows feature lots of strings, starting with her harp.

I thought we were just going for a nice getaway weekend, but TC surprised me by proposing before we went to dinner and the show. And a new phase of our journey together began.

So this spring, when we saw that Loreena was going to be in Columbus on the 4th anniversary of our engagement, Nov. 1, we knew we had to go. It turned out to be perfect timing.

I was feeling well enough to really enjoy the show Wednesday after a liter and a half of fluid was drained from between my right lung and diaphragm on Monday. I loved the show even more than the first time I saw her, knowing her music even better now.

And since Wednesday more progress has been made toward the clinical trial that will be my primary offensive to fight this cancer. After some requisite CT scans tonight (yes, on a Sunday!), I will have all the requirements checked off to begin the clinical trial, which is scheduled to start on Wednesday. I'm also getting a temporary drain put in on Monday so I shouldn't have to deal with the fluid build-up that has made it hard to talk and breathe deeply.

A Loreena McKinnett concert helped kick off our journey to commit ourselves to each other. And we can't help but think another Loreena concert was the perfect start to the journey that will carry us forward from here -- past cancer and with a new appreciation of every day we have together.

With the prayers of family and friends, and with God's healing powers, I look forward to starting chemo and hopefully getting the extra investigational drug to kick this cancer's butt.

Loreena will be a nice soundtrack to listen to during my treatments.

My "lump" timeline

Sept. 6, 2008 -- Whoa! What's that?
I find a lump in my upper right abdomen while fitting the bodice of a gown I'm making to wear to Tom's Civil War re-enacting events.
Sept. 10, 2008 -- Yep, it's a lump
My primary care doc can feel it, too, but guesses it could be a hernia. Tests are scheduled.
Sept. 12, 2008 -- First of many tests
A CT scan is done, along with some blood work.
Sept. 15, 2008 -- Results confirm a mass
My primary care doc says the size is 10 by 9 by 8 centimeters. Time to confer with a surgeon, and we both like Dr. Brenda, who was my breast cancer surgeon in 1996.
Sept. 16, 2008 -- Happy birthday to me
Dr. Brenda wants more tests to make a better game plan for removing the lump.
Sept. 23, 2008 -- What kind of lump?
A CT-guided needle biopsy is performed to find out what the lump is.
Sept. 29, 2008 -- Fears confirmed
Tom and I return home from a wonderful long weekend in Gettysburg but the stress of not knowing and the unabated lump growth have suddenly combined to turn my abdomen to fire. I finally reach Dr. Brenda and she confirms that the lump is a malignant cancer, a sarcoma of connective, smooth muscle. I ask her for pain pills. She asks for more tests.
Oct. 2, 2008 -- More tests
Another scan and an MRI are done to see if the lump has moved into my chest.
Oct. 3, 2008 -- More results
Tom and I see Dr. Brenda and learn the lump has not moved into my chest (good!), but it is too big to be safely removed by surgery. Time to see an oncologist to see if we can shrink the lump.
Oct. 7, 2008 -- New doc on board
Tom and I meet with Dr. Sarwar, who says he will be consulting with a University of Michigan physician who I've already heard is a sarcoma expert. We like the game plan.
Oct. 10, 2008 -- First chemo
This one isn't so bad. Just one drug, Gemzar, is administered this session. I cut back on work a little -- no evening meetings to conserve my energy.
Oct. 17, 2008 -- Second chemo
Now we're kicking some butt. Gemzar is combined with Taxotere to give the lump a one-two punch. I enjoy a short chemo-high from all the good stuff they give you to fight off bad effects but by Sunday I'm wiped out.
Oct. 21, 2008 -- Gaining on the pain
Maybe the chemo has gotten the lump's attention. Dr. Sarwar says it's too soon to expect results but I'm ready to try getting along without the pain pills I had been taking every four hours since Sept. 29. My last pill is at 6 a.m. this morning.
Oct. 26, 2008 -- Feeling good
I have regained energy and started taking on a bit more activity, including some work outside this afternoon to clean out flower pots for the winter.
Oct. 31, 2008 -- Chemo round two
This one will be Gemzar only again; with both Gemzar and Taxotere the following week. The plan is to do at least two rounds of chemo before more scans to test for shrinkage. Maybe four full rounds before I am ready for surgery.
Nov. 21, 2008 -- Chemo round three
Surprisingly, the second round of chemo was easier to tolerate than the first. This day starts the third round and my doctor agrees with my visual assessment that the tumor is shrinking.
Dec. 1, 2008 -- Schedule change
The Thanksgiving holiday prompts a change in the round three chemo schedule. I get a reprieve on the usual Friday appointment and have my double dose instead on this Monday.
Dec. 12, 2008 -- Not the best news
Yesterday's CT scan did not provide the confirmation we had hoped that the tumor is shrinking. The doctor today said it is about the same size as when treatment began in October. But as least it isn't bigger, and blood tests for cancer activity showed improvement.
Dec. 19, 2008 -- Finishing round four
A double dose of chemo today wraps up the fourth cycle of chemo, just in time for a breather before the holidays.
Jan. 9, 2009 -- Chemo cycle five, with a twist
I was ready for a new round of chemo the day after New Year's but the doctor's office didn't have enough other willing patients that Friday to warrant bringing the doctor in, so the fifth cycle was delayed to today. Rather than further postpone the attack, the doctor made today a double-dose day, with the single dose next Friday.
Jan. 14, 2009 -- PET scan
I think I've had every kind of scan there is now; this one is to look inside the tumor at cancer activity, or lack there of.
Jan. 16, 2009 -- Final chemo
Today's single dose ends up being my last. This week's scan showed a lot of the tumor is dead tissue but it is still active and growing at the top. Challenge now is to find the right surgeon to take out the tumor.
Feb. 12, 2009 -- Cut it out!
This is the date for surgery at OSU Medical Center to remove this tumor, now too massive to call just a lump. It will be more like delivering a demon baby.
Feb. 13, 2009 -- It's finally gone
The operation was a success. In addition to taking out about 10 pounds of tumor, the surgeon also removed pieces of my pancreas, stomach and intestines but didn't have to take out a kidney, as he thought he might. I have two drains in my side and a tube through my nose to my stomach, along with an IV-tube in my neck, but knowing the tumor is gone is a great relief.
Feb. 20, 2009 -- Going home
A week and a day after surgery, I am heading home. It's nice to get in my own bed but I still have a long recovery ahead.
March 3, 2009 -- More progress
I leave a follow-up visit to the surgeon with my staples and the last drain removed. He says I am doing great; that some people who had such extensive surgery would still be in the hospital.
March 17, 2009 -- Looking ahead
Tom and I meet with a new oncologist today. His job will be to guard against recurrences and help me fight back if they occur. He seems appropriately thorough and up for the task.

Mary's blog 4 healing