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Carole’s Story

The story begins: Friday, the 13th of July, 2012. Thank you so much for stopping by and sharing your thoughts.

I started this page after a life-changing week which resulted in a diagnosis of primary peritoneal carcinomatosis. I’ve heard stories from people who have conquered other hopeless-sounding cancers, and I hope I’m as lucky. Treatment for peritoneal cancer is identical to the treatment for ovarian cancer and many issues are the same.

“Primary peritoneal carcinoma is very uncommon. Primary peritoneal carcinoma usually manifests with abdominal distention and diffuse nonspecific abdominal pain secondary to ascites [fluid in abdomen]. Survival is poor for patients with primary peritoneal carcinoma, with 100% mortality; the median survival reported is 12-25 months, even with extensive surgery and chemotherapy.”
--Medscape reference section, 8/10/2010

“Peritoneal carcinomatosis represents an advanced form of intra-abdominal and pelvic malignant tumors that has been generally associated with a grim prognosis. The peritoneal component of cancer is often the major source of morbidity and mortality. . . .” 
 --Principles of Perioperative Intraperitoneal Chemotherapy for Peritoneal Carcinomatosis, de Bree & Tsiftsis, in Recent Results in Cancer Research, Vol. 169, Springer-Verlag, 2007

“Malignant peritoneal disease in its various forms is a devastating condition for patients who suffer from it and it poses a significant challenge for the clinicians taking care of them. Research efforts in this field have traditionally been scarce under the assumption of a uniformly fatal and hopeless outcome. In the last few decades a renewed interest in peritoneal carcinomatosis and primary peritoneal malignancies has occurred.  Unprecedented favorable results reported with the employment of aggressive cytoreductive surgery combined with perioperative intraperitoneal chemotherapy have catalyzed a change in the conception and treatment alternatives for these diseases. Selected patients can now be offered a curative-intent combination therapy, whereas in the past only the best possible palliation could be considered.” 
--Advances in Peritoneal Surface Oncology, González-Moreno, Ed.

Through Thanksgiving 2013, I was grateful for several months of remission and a benchmark CA 125 blood test (measuring disease in both my peritoneal cancer and in closely related ovarian cancer) still in the normal range--but just barely. I was hoping it would stay there, but the CA 125 reading in December was above the normal range. By March 2014 it was much higher, signifying recurrence: 
  • "High values of CA-125 in a woman who has been treated for ovarian cancer may mean that the cancer has returned. Often the high CA-125 level is found many months before the return of cancer can be found in another way."--WebMD
  • "Among patients in complete clinical remission, a progressive low-level increase in serum CA-125 levels is strongly predictive of disease recurrence."--Journal of Clinical Oncology
As of April 2014, with the benchmark CA 125 number at 327, I was back on chemotherapy but still without clinical symptoms. My CA 125 number declined over several months on chemo but never got back to the normal range, although it was close. By fall of 2014, CA 125 was climbing again, vague clinical symptoms emerged, and a PET scan showed numerous new cancerous lesions. So with fingers and toes crossed, it was on to a new chemo drug in November 2014. Unfortunately, that chemo drug was too toxic to continue and ineffective anyway. The next chemo drug was ineffective too. Options seem to be dwindling; but in the spring of 2015 genetic testing of some of the tumors in my abdomen pointed to some drugs which might be more effective. Waiting for the verdict.

As you can see, Doug has not been entirely successful in his efforts to keep me away from internet search results.

Latest Journal Update

An update

First of all: Let me say once more that although your generous contributions are much appreciated, don't let Caring Bridge intimidate you into giving. A generous regular contribution is already made that's more than enough to keep this site going.

Second: Can't begin to tell you how much your kind and loving comments mean to me, especially now that things have taken a turn for the worse. I treasure your words and kind gestures.   

And third: How did I end up here? My head is still spinning. I realize now I've been less than clear about all that's going on. I'm way overdue in trying to update here, so will do my best. Overall, I'm not doing nearly as well as one would hope. I'm mostly bedridden, on supplemental oxygen & needing much more treatment. But there are only minor signs of improvement. 

It hardly seems possible that in May, we were walking all over Alaskan and Canadian ports. Yes, I tired easily, but we loved every minute of our 2-week+ sail up the Pacific coast.  At the time, I was on a new chemo regimen that was suggested by DNA analysis of my tumors. Boy, did they miss the mark. As I wrote earlier, by the time we returned my benchmark CA125 number had soared to its highest number ever. So my doc suggested yet another chemo, Abraxane, which I've been on every 3 wks since mid-June. It's had some positive effect, but its side effects are very tough. Had to postpone chemo once 'cuz I was too sick; also had to have supplemental hydration. But the infusion before last cut my CA125 in half, to 1542, & the last infusion reduced it a little more to 1398. Whether we continue to see my CA125 sink further on Abraxane will determine when I abandon treatment & go to hospice. That is, assuming Abraxane's toxicity doesn't get to me first.

Whether it was the effects of my illness itself or the Abraxane, all this time after I started Abraxane I was in severe pain. Finally in mid-July, doctor's order was go the Tucson Med Ctr ER. That resulted in a nightmare week in the hospital--some of you may have read my Facebook posts about my 400-lb roommate who partied until midnight & then whose family moved all the furniture so they could make beds for their noisy overnight stay. All of this was at a time when I wasn't sure I'd make it thru the night. The hospital also screwed up my other meds big-time, resulting in the worst rheumatoid arthritis attacks in memory. They didn't have Nexium for my GERD, so they told Doug to bring me Nexium from home. Then they lost it & blamed me. They brought me meds I'm supposed to take on a full stomach & meds I'm supposed to take on an empty stomach all at the same time. Most of these foul-ups can be laid at the feet of the hospitalist, the perfectly named Dr. No. (Yes, his real name.) He disagreed with my oncologist about what I needed, setting me up so I had to choose between the 2 of them. He continually changed his mind about what he thought I needed. And when we were finally ready to leave, he delayed my departure by a day or 2 'cuz he couldn't get all the paperwork in order.

During my hospital stay the subject of hospice came up again & again. It's complicated, but basically I must abandon chemo before I can enter a hospice program. So as I said--as long as Abraxane is reducing my CA125 & I can tolerate it, I likely will continue on chemo.

This has been a hectic week: blood tests Tues; chemo Wed; then Thurs, 2 pints of platelets for my severe anemia; then Fri, gut-punching to drain 2.6 liters of fluid from my abdomen. Ascites--or fluid on the abdomen--is a symptom of my disease. Chemo is supposed to reduce this; but still, every week or 2 the pressure from accumulating fluid becomes unbearable. So they stick a big needle in my abdomen to drain the fluid--an easy way to lose 6 lbs! Doug watched for the 1st time yesterday, & he's a little more squeamish than I expected.

So there you have it. I imagine I'm now permanently housebound (except for doc visits), but miracles can happen. I owe many of you replies to your kind messages, but I'm weak & not able to do much of anything. Doug continues as the faithful hardworking angel, & I feel so sorry for his having to manage everything. What would I ever do without him?




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Comments

21 Comments

Linda Paulsen
By Linda Paulsen
You are a total inspiration! My thoughts and prayers are with you and Doug every day!
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Patti Brown
By Patti Brown — last edited
How else do I say this, except that when I fight that final battle someday, I hope to do it with half the amount of class, humor, grace and wit that you are displaying! You have always been such a demonstrative spirit on how to live, thanks for setting an incredible example during your final act. Love you so much!!!!

Also wanted to share this excerpt from an email I sent my Mom earlier today: "Ray and I are so thankful that we were able to see her last year in Tucson, when she was feeling well. That is how I want to always remember her. Joking about her "mis-spent youth", eating good food, telling travel stories and laughing with Doug."
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Bill Seaton
By Bill Seaton
Carole, my brave, immensely talented friend: My Sunday dinner awaits, but I must tell you briefly that your writings have moved and amused me to the point I can't stop thinking about you and your condition. Your memoirs are solid, moving recollections, which I have enjoyed immensely. My regret is that you have had to stop. But thank you for sharing those memories of Jack White (still shocks me) and the wonderful zoo folk (like our prez who could not read his lines straight) and sharing with us your remembrances of a so-special personal and professional life. It was a task well-done, especially in your weakened condition. Like all your wonderful, caring family and friends (how fortunate to have Doug in your life), Lovae and I are hoping for news of your lessened pain and better days,

We send our sincere love and thanks for sharing highlights of your career and personal life. My best to your dutiful husband.

Bill and Lovae (we tried e-mail but it didn't work.)
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Bill Seaton
By Bill Seaton
Carole, Dear:

I'm only about 30-some pages into the fascinating life story you delightfully penned and so kindly sent us. But I had to stop for a shower and thought I'd let you know I'm reading it and enjoying your remembrances like crazy.

Your recollections are so fun to read and vividly recall for me the
charming,bright, delightful young lady I was associated with in those
never-to-be-forgotten zoodaze. It also makes me regret that I didn't fully realize how talented you were, or knew that much about your interesting past. But I wasn't at all surprised when I first heard that you'd been promoted to PR manager, then went on to success and made a name for yourself in the zoological and PR worlds in subsequent years!

I'll be back in touch after I finish in a few days (I'm still pounding away with my zany novel version of "Love in a Man-Made Jungle.")

But let me conclude by saying, Lovae and I are just depressed over your current relapse with that nasty battle you are going through. We just wish there was something we could say or do...other than: we're counting on you to get well, so we can have that long-overdue reunion! Your brave, painful struggle brings tears to these old eyes.

Thanks again, for sharing your story. I can''t wait to get back to it and see what you say about "Brute," and "Andy" and the other characters in our fascinating past lives! (You didn't have to deal much with Howard Chernoff, did you?)

Love you to pieces brave little lady.

Bill
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Patricia Nutt
By
Hugs and prayers are with both you and Doug! There are miracles out there and I know one of them has your name on it!!!
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Lynn Oberg
By Lynn Oberg
What comes to my mine is that you TWO are amazing couple. This journey that you two have been on you both show so much courage, faith and LOVE for each other and not to many people can say that. God bless you both and my prayers and thoughts will be with you always. Your amazing strength has help many people I am sure and hope the drug will work for you and that your pain is taken away. Prayers to you Carol for that miracle which YES they do happen.
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Cindy Forrester
By Cindy Forrester
I have admired your willingness to share your journey to help not only your friends and family, but others that just might be on the same path. I've used your journals as references to various treatments available for my mom as well. Thank you for that. All I can offer you is prayers of comfort and healing and I will continue to do so.
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Linda Jokela
By Linda Jokela
Hi to both you and Doug,
What a kind and generous woman you are, amidst all your troubles, to take the time and effort to send such a lovely birthday card. Thank you so much! Your thoughtfulness is outdone only by your courage and fearless determination in fighting this nasty cancer. You are truly awesome. Am hoping and praying your numbers continue to go down and chemo side effects are tolerable. Think of you and Doug often; the boys and I send positive energy your way each and every day.
Much Love, Linda, Philleap and Francois
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Patti Brown
By Patti, Ray & Zachary
Thanks for the update. So many prayers right now for you and Doug. We love you!
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nancy ireland
By nancy ireland
...have been wondering where you & doug are at in this vicious fight. Thank you for the update and know I care! with hugs, n
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