Comfort and blessings

First, let me apologize for the long lag time between leaving the hospital and entering hospice care just before Christmas and not writing since then. I feel almost selfish for taking time to decompress from all the constant tests and talk about potential new treatments with little promise of even shrinking the tumor by one third. 

But you were all busy with the holidays, too, and I enjoyed posts of your celebrations. 

Now that I have been home a couple of weeks with hospice support and with the loving and untiring care of TC (although he must be exhausted) and a whole cavalry of siblings and in-laws and children and grandchildren and step kids and step grands and friends and neighbors, I am feeling so much better and stronger.

I am sleeping well, napping once or twice a day and eating wonderful and nourishing soups and meals that are all tasting delicious. I have even regained an interest in working crossword puzzles, reading the paper (even if it's old news), playing dominoes and watching TV shows and sports -- especially the basketball Buckeyes.   

Finally I feel like the symptoms of fluid retention throughout my body, and support for better breathing and less anxiety, are being addressed. I am able to take showers and even the occasional heavenly bath. 

There is also the promise of an actual massage coming! Although TC sees to plenty of loving daily back and feet rubs, too. 

The pampering I am receiving makes me feel so loved and blessed. I almost feel like my sarcoma is a bit less angry also. We aren't attacking it, so maybe it's not determined to fight back so hard. I'd be perfectly contented for it to make me an outlier again and go into hiding for another 12 years. What a miracle that would be!

Either way, I'm focused on everything and everyone that delivers me strength and love each day. 

It is my intent to use all the blessings I can muster to reflect them back to others. So If my writing and musings help you reflect on your own good fortune and find ways to use your talents to bless others, please do. 

Isn't that what we're all here for? To make life better for each other? I know so many of you are doing that for me, and I deeply appreciate it. 

 

Comfort and blessings

 

First, let me apologize for the long lag time between leaving the hospital and entering hospice care just before Christmas and not writing since then. I feel almost selfish for taking time to decompress from all the constant tests and talk about potential new treatments with little promise of even shrinking the tumor by one third. 

But you were all busy with the holidays, too, and I enjoyed posts of your celebrations. 

Now that I have been home a couple of weeks with hospice support and with the loving and untiring care of TC (although he must be exhausted) and a whole cavalry of siblings and in-laws and children and grandchildren and step kids and step grands and friends and neighbors, I am feeling so much better and stronger.

I am sleeping well, napping once or twice a day and eating wonderful and nourishing soups and meals that are all tasting delicious. I have even regained an interest in working crossword puzzles, reading the paper (even if it's old news), playing dominoes and watching TV shows and sports -- especially the basketball Buckeyes.   

Finally I feel like the symptoms of fluid retention throughout my body, and support for better breathing and less anxiety, are being addressed. I am able to take showers and even the occasional heavenly bath. 

There is also the promise of an actual massage coming! Although TC sees to plenty of loving daily back and feet rubs, too. 

The pampering I am receiving makes me feel so loved and blessed. I almost feel like my sarcoma is a bit less angry also. We aren't attacking it, so maybe it's not determined to fight back so hard. I'd be perfectly contented for it to make me an outlier again and go into hiding for another 12 years. What a miracle that would be!

Either way, I'm focused on everything and everyone that delivers me strength and love each day. 

It is my intent to use all the blessings I can muster to reflect them back to others. So If my writing and musings help you reflect on your own good fortune and find ways to use your talents to bless others, please do. 

Isn't that what we're all here for? To make life better for each other? I know so many of you are doing that for me, and I deeply appreciate it. 

Blossoming

This poor little Christmas cactus is a methaphor for my current situation. We’re both beat up and worn out but, like my cactus, I’m determined to bloom again.

The cactus was a gift years ago from my daughter’s in-laws, Walter and Mary.

It was robust when I received it and for many years after. 

Then earlier this year, about the time I started dealing with my sarcoma recurrence, I decided the cactus needed either to be tossed or given some TLC to try to bring it back.

I put it in a different planter, repotted it in new soil and moved it to brighter location in our sunroom. It’s still straggly and a bit weak but darn if it hasn’t found a way to bloom just in time for the Christmas season!

So now I’m weak and back in The James Cancer Hospital as my gardeners in oncology, surgery and radiation look at their tools to try to figure out how they can bring me back to vitality.

I was admitted on Friday after talking with my oncologist about swelling in my feet and increased trouble breathing. Tests since then have shown the cancer has grown significantly despite the clinical trial chemo drugs. 

More tests are slated to help my gardeners decide what other options we have. TC and I are relying heavily on the prayers in our tool box. 

I may not be quite ready to bloom by Christmas, but I hope to regain some energy and be able to breathe easier by then.

May you all have a beautiful week leading up to Christmas. 

New rhythms

As I adjust to this new chemo clinical trial schedule, TC and I are getting used to the rhythms of the ups and downs of my energy levels. 

But I'm really enjoying the soundtrack of these days. 

TC picked up a guitar not quite a year ago and has come very far, in my opinion, in teaching himself to play. Plus I really like to hear him sing.

He's still a little audience-shy, with a few exceptions for grandkids and a couple of performances with friends earlier this summer. I'm the lucky one who gets to hear him most days, even if he's just practicing in another room because he thinks his "caterwauling" is going to disturb me. It never does.

And now that we know what to expect from the cancer-fighting drugs I'm taking, those new rhythms are getting easier to handle. 

The first chemo cycle was tough, but I'm attributing most of that to dealing with the chest drain and the difficulties I was having getting more than a few words out at a time. There was a lot of back and neck pain for several days last week after the drain came out, but that has also resolved.

Now we know that there is a window after each infusion every three weeks, from about day 5 to day 10, when my immunity is lowest. And we know the chemo pills that I take a couple times a week will make me tired the next day. So we mark the calendar accordingly and plan around it. 

We mask up when we're around others, even family, since it's that time of year when lots of bugs like to come inside. And TC is making lots of healthy food and juices. Friends and neighbors have also brought homemade soups to warm up chilly evenings. I can't thank them enough.

Here's to great holiday rhythms for all of you!

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.