Monday, February 8, 2010

Big C Update

I've put this off for more than a month, folks. It's like a tape I could just play for you over and over. But this time, there's a new twist.

The good news is: no more chemo. The Cytoxan produced minimal results; nowhere near enough improvement to justify continuing with this horrible poison. My treatment options at this point are not good. I am seeing a world-renowned oncologist in whom I have complete faith, but it's the nature of any oncologist to want to do something rather than nothing, even if something is horrible and has very little chance of producing better results than everything I've already tried. He proposed a high-dose chemo regimen that sounds 100 times worse than the Cytoxan. In my current condition (and I needed another transfusion Saturday), I'm pretty sure this "cure" would kill me.

Being a good girl, doing as I was told for the last two years -- especially when it was contrary to all my instincts -- has been a psychological burden almost as great as the physical ones I have endured. I was ready to hang up my spurs a year ago, but it didn't seem fair to my family since at the time, they believed remission was just one more chemo treatment away. Although I didn't see the need, I did get a second opinion this fall. I've been in treatment now for more than two years, with very few (very brief!) breaks: radiation, a stem cell transplant, and six kinds of chemo including a clinical trial. So I've decided: Enough. My medical team is very supportive and, I suspect, just a tiny bit relieved, too. I'll be switching to what they call "palliative care," which is just treating the symptoms as they arise.

I'm hoping to regain some health, and enjoy the best possible quality of life for as long as I can. I've still got a long way to go; two doses of Cytoxan practically killed me. I doubt I would have survived six. Even if I don't improve a whole lot from where I am today, just knowing that I don't have to keep infusing poison into my body fills me with joy. If I had a spouse or children, I would be more inclined to try anything, to squeeze as much time as possible out of this life, but I'm finally giving in to that inner voice, and it's telling me to choose quality over quantity.

As you might imagine, this was not an easy decision. But after 2+ years on the front lines, getting sicker and sicker instead of better and better, I know this is the right choice for me. As soon as I shared my decision with family and a few friends, I felt immense relief and gratitude.

If you happen to disagree with my decision, I don't really care, so please have the manners and good grace to keep it to yourself.
P.S. Every patient is different, but they all share the right to hope for the best possible outcome. In my case, the "best possible outcome" has changed a little. MM patients and their loved ones don't need the details of my particular situation, so this is my last MM post.


Anonymous said...

YOu are amazing and i have really enjoyed your blog. You will be in my prayers.

Anonymous said...

I totally respect and admire your decision. I hope I can make the same choice when I need to in this MM journey. Please keep posting, the insights you will gain will help us all, though you owe us nothing and if you wish to keep it private that is Ok too.
It goes with out saying that I wish the treatments would have worked.

mar said...

You are one of the most amazing women I have ever (not)met. You inspire me with your strength and positive attitude every time I read your posts.

My wish for you now is for everything you wish for at this time.

Let me quote the words above me that were very nicely said, "Please keep posting, the insights you will gain will help us all, though you owe us nothing and if you wish to keep it private that is Ok too. It goes with out saying that I wish the treatments would have worked." Me too.

tim's wife said...

I'm a little stunned right now.
I know you have thought about this for some time, but I feel such sadness to read this post, yet understanding too. Life's just no damn fair. I have met many people via this internet in the last few years. I must say that you are on the short list of folks I wish I could meet. I have such respect for
your wisdom, sense of humor, and yes.... your attitude! I have enjoyed your blog like none other and it is always the first one I check when looking for updates on the ones I follow. I confess that I'm always a little disappointed when there's not a new post filled with your wonderful tales. I wish nothing but peace, love and grace to surround you and comfort you.
I selfishly hope to hear from you again but just know that you will be in my thoughts and prayers. I'm gonna get out that heart pin you sent me last year and send you powerful vibes through it.
All the best to you Nancy from NJ, Denise

Kathy from NJ said...

I am so sorry that the treatments didn't work. You sound like you are at peace with your decision and I thank you for sharing something so personal with all of us.

I love the stories and pictures of "the olden days," what a wonderful gift for your family.

Sid said...

La Cootina,
You are so honest.
"Remission was just one more chemo treatment away", that's the dream many of us with myeloma have.
I have gained a lot from your postings, you shared your life with us, you shared your myeloma journey with us.
Many times I finished a posting of yours with a smile on my face, today a few tears.
I respect your decision,you will be in my prayers.

Dawn said...

Thank you for sharing your very personal journey with me. Having visited your site has enriched my life and helped me with the struggles of a dear a cherished friend. Much love and much peace and laughter (don't forget the laughter).

Cathy C said...

I completely agree with your decision. I'm sure it's not an easy one to make but I know the last 2 years have been tough. You are an amazing person. Hopefully soon enough you'll feel up to having me visit.

Unknown said...

I shall miss your postings. You have made me smile or laugh, more than once. I have related to your recounting of past joys, probably because we are close in age, and I have always enjoyed hearing about you and your foodies. I hope I will have the strength to face life the way you have and to make the difficult decisions at the right time. Thanks you for all the lessons you have given me.

gina said...

I too am sorry that the latest chemo treatment did not live up to its promise, but I congratulate you on having the wisdom, bravery and self-knowledge to take control of your medical future at this point. (Or, in your own words: "Hooray for courage, adventure, and taking care of yourself.") I know you only through reading your blog these past few months, but I admire you so much, for many reasons - and you have just added another.

You definitely are, as you say, the heroine of your own story. What more can any of us aspire to?

I hope that your body rebounds quickly from the toxic therapy, and I wish you all the happiness you can wring from this life. (Your blog documents that you are better at that wringing than most!)

Michelle@Gotchababy said...

Oh friend, you are AMAZING. I completely understand the decision you've made. I do hope you feel up to company soon, AND that spring will spring upon this city soon that I will not be covered in germs and snot and not a total threat to your well-being. Til then, sending virtual hugs to you my friend.

Margaret said...

Even though you say that this will be your last MM post, I know (and hope!) that you won't stop blogging. Keep it up!
As you say, you've still got a long way to go. Yes!
Best wishes and a big hug from across the ocean...

Sandy said...

Miss Coot - so many have said what I feel... and we hate to let you go. What I have realized from your remarkable sharing is that love and connection have no boundaries and surely that will set an example for those who follow... or we can hope, can't we?

If you need a "letter of recommendation" to enter the pearly gates, just tell St. Pete to read your blog and all the replies...oh, but he already has, and you will have an easy trip. I intend for you more joy, more family, more friends and more peace are around you now as you prepare for this next step.

None of us will get out of this game alive and you have given us some instructions on how to play gracefully. I thank you for the investment in time and energy that all your blogging took, I thank you for sharing some deeply personal issues, and I thank you just for being you, the wonderful Miss Coot that I have come to know - and will miss.

Karen said...

Cootina, I'm not sure what to say, except I completely understand your decision. You're an amazing lady and I love your blog.