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!

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? 

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.

Hoping for a great sunrise

 

The PET scan I had a week ago confirmed the bad news. My cancer has returned in almost the same place where it was surgically removed in June, and it's brought along a smaller buddy higher up in my right lung. 

We met with the oncologist a few days ago and agreed the best course of treatment is to try to get into a clinical trial that holds some promise for beating back leiomyosarcoma. There are a few hurdles to clear first, such as having a needle biopsy to confirm the cancer culprit's identify, even though we are 99.99% sure we know exactly who the bastard is. We've seen him before. 

But clinical trials have to follow strict protocols in order to ultimately win FDA approval for the drugs they test, so we're trying to get those T's crossed and I's dotted now so the chemo can start ASAP.

As I wait to get cleared for chemotherapy, I need to learn to keep my mouth shut. It's not because of what I might say but because there is some fluid buildup in my lungs from the growing tumors and I am having trouble talking without coughing every few words right now. Good thing my strength is writing, not speaking.

Here's the part I like best -- the name of this particular clinical trial is Sunrise. How beautiful is that? I'm all for seeing many more sunrises.

I have two prayer requests, for those who are so inclined: Please pray for me to get into the clinical trial as soon as possible, and please pray for me to actually receive the new drug they are testing as well as a proven chemotherapy drug that has had some success with sarcoma. The clinical trial coordinator says two of three participants in the study will receive the new drug while one of three will get a placebo along with the already approved drug. 

I am very thankful for all who follow my blog and add me to your prayers. I wish many beautiful sunrises for you as well. 

Is you is or is you ain't?

How are you with Rorschach tests? Or those optical illusion pictures that can be two different things, either an old lady in a scarf or a young woman looking away, depending on your perspective.

That's kind of how my latest CT scans look to my OSU James Cancer Hospital physicians. A radiologist and the medical oncologist that we saw on Wednesday look at the shadow between my heart and right lung and see a tumor returning in the area where a larger mass was taken out in June. 

But the surgeon sees a more positive possibility -- maybe the shadow is just a space where the lung hasn't yet filled in to the void where the sarcoma tumor was extracted. 

So TC and I left the medical visit with two very different possible scenarios, and lots of uncomfortable thoughts. 

In the next 10 days or so, tests on blood drawn yesterday and a PET scan on Oct. 20 should reveal the shadow's true nature. If it turns out to be the return of my sarcoma, then we'll have decisions to make about chemotherapy (maybe in a clinical trial) and/or targeted radiation. The oncologist does not believe surgery would be an option, but I would still want to consult the surgeon to hear it from him. 

Meanwhile, I am feeling fine and as healthy and strong as ever. All prayers and positive thoughts are appreciated for this mysterious shadow to turn out to be nothing of concern. 

Stepping up

 
It's been too long since I've been involved with a fundraiser that specifically targets the cancer that has thrice threatened my life and continues to lurk on the horizon. 

The last time my family and I walked in Steps for Sarcoma was September 2014. My then-husband of 40 years struggled to complete the 3-mile path, and within days Tom was hospitalized with the leukemia that took his life six weeks later. So it was emotionally difficult to contemplate signing up for another race. 

But life goes on, and I have been blessed to have found a loving new partner in TC, who shares my determination to do all we can to keep sarcoma from writing my final chapter. That includes supporting efforts like Steps for Sarcoma, which funds research for sarcoma causes, treatments and cures at the OSU Comprehensive Cancer 'Center - James.  

The wake-up call we received with my third sarcoma diagnosis this past spring was the reminder I needed to once again sign up to support this important fundraiser. However, that nudge came after we had already planned to embark on TC's first-ever cruise in September.

Having successfully navigated and healed from surgery in June to remove two sarcoma tumors in my right lung, we plan to keep the cruise on our calendar, even though it means not being there physically to walk in the 14th annual Steps for Sarcoma on Sept. 17.

I will be there in spirit, though, through anyone who wants to join my team or contribute toward my goal of raising $1,000 for the cause. 

I've never made a fundraising ask for my Sept. 16 birthday, but this may become an annual wish for me. Here are the links if you would like to make a donation to Steps for Sarcoma in my honor -- and I would be greatly honored if you do -- by searching for my name on the donation page. Or join the team I will be leading in absentia by searching for Mary's Mighty Marchers. 

And next year let's do it in person!

Prayers answered

"Negative" has never sounded so positive.

As in, the post-surgery blood test that we have been waiting for to show whether the custom DNA analysis for cancer markers in my blood found any signs of cancer. Negative!

The shared joy was apparent in the voice on the other end of the phone call I received late Monday afternoon from my medical oncologist. He said he had good news, and I could tell from his tone that it was very good even before he said the words. 

This was exactly the result we had been hoping and fervently praying for -- along with friends and family members. The doctor cautioned that this kind of analysis is still new, but along with my previous history of a dozen years between recurrences and the clean pathology report after my June 9 surgery, this third indicator of no sign of cancer in my blood sealed his recommendation to forego chemotherapy. 

Did you hear our huge sign of relief?

I had been growing anxious as the wait for blood test results stretched longer. The lightness I felt after talking with the doctor was immense. I had just stopped at my daughter's house to give her chickens some food and water and I almost felt like hugging the hens as I ended the call and processed the great news. 

CT scans at the end of September will be the next destination on this journey. TC and I will keep the faith and stay positive that they, too, will come back "negative."