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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

Janet Huls
By Janet Huls
prayers, hope the pain will be less and that you gain strength
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Jeff Jouett
By
Out of the blue, started thinking about the time you took us all on a way cool private, behind-the-scenes tour of the “Flip Ship”, the Navy research vessel docked at Point Loma naval yard. Now for a medical or miracle flip-ship to turn your pain and ill health in the other direction! My thoughts and admiration are with you, boss. And love surrounding……
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Judy Shea
By
I continue to marvel at your stamina and ability to continue with your fighting spirit. I think of you often and will continue to keep both you and Doug in my prayers. On the other hand I don't have to many good things to say about some of the doctors our there. May they someday have to be at each other's mercy!
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Gina Librano
By Gina Lubrano — last edited
Dear Carole, I wish all of us who love you could take some of your pain away. Keep fighting, my beautiful friend.
And, on a much lighter note, I KNOW why no one else will play Words With Friends with you!
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Georgeanne Irvine
By Georgeanne Irvine
Carole, I know you will continue fighting--and please know that all of us who love you are with you in spirit! Miracles can happen--I truly believe that! You are so very brave!!! Sending you lots of love and healing energy!
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JoEllen Cron
By jo Cron
You are such a fighter and that is good considering your current "foes". I think of you so often and am amazed with your determination. By now I am sure I would have thrown the towel in and just said..."to hell with it." By what is most upsetting for me is why in the world does your present situation need to so PAINFUL as well!!! So sorry that all of this. :(
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Michael Kirk
By Michael Kirk
Dear Carole, Thank you so much for sharing your life's journey with us, through your DVD memoir and also with CaringBridge through your difficult and courageous struggle against cancer. Cancer probably will strike some of those among your friends and relatives, too. Knowing something of your story might help them find their way through difficult times, someday. You have been strong, smart and so articulate throughout this ordeal, and I am pleased to be related to such a capable cousin. Keep your spirits up, and remember that hope is the best of things. If there is a way for you to beat this disease, I believe you will be the one to find it. Best Wishes and Love,
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Judy Meyer
By Judy Meyer
I am so sorry you had to spend that week in Tucson! I know it was really hard on you...and if they ever try to send you there again...GRRRR. Follow your head and heart on the future. Your attitude (positive) will keep you going in the right direction; I know. I think of you daily, as do all your friends. Think of all of us as your team-mates, standing next to you and cheering you onward. Bless Doug, I know this is hard for him too.
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Virginia Towne
By Virginia
Love dear friend. Being sick is the pits! Can you get books on line? TV is so bad (except football) and can be depressing. I hope you get to get up and look out at least. Make the dogs entertain you.

I understand a little squeamishness, I have watched doctors cut on me, have done surgery on my left hand, been stitched up, worked in a hospital helping the doctor administer and remove stitches. It never bothered me until I watched the doctor stitch up Rick's head. If you love someone, it upsets you to watch.
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