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's on to a new chemo drug in November 2014.

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

Latest Journal Update

Still waiting.

Been on tenterhooks awaiting the first CA125 results from my new chemo drug, Gemzar. We were warned not to look for too much, that I probably need at least a couple more infusions before results would be meaningful. That’s good to know—because results are not spectacular so far. Blood drawn this week, after 2 Gemzar treatments, shows a slight decrease in the benchmark CA125 number, from the last reading of 543 in Feb to 518 this week.

There won’t be another CA125 measurement for 4 more weeks. I was in the habit of getting a new CA125 number each time blood was drawn, as often as every week, & in the past it’s been encouraging to see the number decrease regularly. But my new oncologist, Dr. Hallum, says testing that frequently is a waste of money. He orders CA125 tests only once a month. He says after a few more infusions, if the CA125 number is remaining stable even if it is not sinking to normal range, he’ll consider the Gemzar treatment successful.

The little bobbles at Hallum’s office continue. I’d been told with my new chemo schedule of every other week, I’d see the doc every 4th week. Yesterday was the 4th week, & Doug went along to lend moral support in the face of the brusque nurses and to hear what Dr. Hallum said about my many questions. But when we arrived we were ushered straight into the chemo room. “Am I not going to see the doctor today?” I asked. The nurse looked at me blankly, consulted her records, & then said, “Oh, yeah, Carole IS supposed to see the doctor today. Have a seat here while we figure it out.” At the office of my previous oncologist, Dr. Brooks, there was NEVER any confusion about whom I’d see.

Wait…wait…wait. After a bit another nurse type said, “OK, you can see the doctor, but we don’t have any labs for you.” I explained I had just come from there & reiterated to the lab they were to fax results over right away. What more am I expected to do?

As I wrote earlier, the doctor told me over a month ago he was sending my saved tumor samples for DNA sequencing. He said the process takes “a couple of weeks.” So yesterday I asked if results were back yet—and Hallum obviously had forgot all about it. Brooks always had any of my unresolved issues in mind & typically brought them up before I did, anticipating my questions.

Hallum looked for DNA results but couldn’t find any. I guess it doesn’t matter. He said, “No matter what the DNA results are, I wouldn’t change your treatment right now.” He did say, contrary to what has been reported, that DNA results will be useful no matter what they are. Some sources have said that DNA results might not be useful because no drug may be available to treat what the DNA results point to. To the contrary, Hallum said results are sure to point to which drug should be most effective. Even if it’s a drug I’ve been on before which appeared to become ineffective over time, I might go back to the drug if DNA results indicate it should work again for me, Hallum said.

This week I read the obituary of Lisa Boncheck Adams, http://parenting.blogs.nytimes.com/2015/03/09/lisa-boncheck-adams-she-did-as-much-as-she-could-for-a...  She was a young mother who died this week of metastasized breast cancer. Hadn’t heard of her before, but apparently she was well known for blogging frequently and in detail about her illness. More importantly, what I hadn’t heard about before was the judgment she suffered for her blogging. Apparently someone I previously admired—Bill Keller, former executive editor of the NY Times—found her blogging objectionable, and so did his wife. http://nymag.com/daily/intelligencer/2014/01/bill-emma-keller-matching-cancer-columns.html

They both seemed to think she should have died quietly, keeping her suffering and her fears to herself. Well, I’m with Lisa. Whatever the future holds, I intend to continue recording my thoughts. If others consider it oversharing or undignified, so be it. I started this effort for selfish reasons—to avoid having to repeat again & again to anyone who might want to know the current state of my illness. I’m finding it useful for other selfish reasons. I’m building a record of what’s happened for a far longer period than I expected to be alive upon my diagnosis nearly 3 years ago. And I find the effort therapeutic. So there, Bill & Emma Keller. 

It has occurred to me that my carers might very well read this blog, since it appears under my real name, & may not care for the criticisms I’ve leveled at them. And to them I also say: so there. You’ve earned it.

Must be the 2nd Friday the 13th in 4 weeks that has me on my high horse. OK, now I’m calm.

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Comments

8 Comments

Grace Ehlers
By Grace Ehlers
Keep writing, Carole, your thoughts and fears are there for many who cannot verbalize them as well as you do. We are all people who care about you and want to hear of your progress and frustrations and disappointments. How thankful we are that the advancement in cancer treatment is at the point that it is even if there is much more to achieve. So keep plugging away and holding those to task who are to have their patients best interest at heart. You are the important one in this picture. Love hearing of all the sideline events of your life also. It keeps you sane having more than just a medical agenda.
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Jeff Jouett
By
Keep 'em coming, Carole!

Illegitimis non carborundum!

Your faithful reader,
--jj
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Cindy Forrester
By Cindy Forrester
Good for you for posting how you really feel. I've never had the misfortune of being treated by a doctor or nurse that appear to be uncaring and unsympathetic. I went to my mom's appointments in order to be the person that kept notes and asked questions that she might not think to ask. I always found her caregivers to be considerate, helpful and extremely compassionate. I hope your complaints are read and make a difference.

Prayers continue for you.
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Carol Haywood
By Carol Haywood
I already posted my comment(s)!! And once is enough!!
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Carol Haywood
By Carol Haywood
Calm is good!! And yesterday was Friday the 13th and nothing bad happened!! Keep the faith!! And trust Doug ... he knows!! My best to you both
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Judy Meyer
By Judy Meyer
You have to keep this journal going, and if the doctors read it,so be it. There just aren't many "caring" doctors left. Those who are "too busy" to show care and understanding should go back to medical school and remember why they became doctors in the first place. Was it for riches, or because they truly want to help people. I've had a little experience with both kinds, and would gladly keep those who care, and wouldn't go back to those that don't! I have walked out of at least 2 doctors offices; possibly more. :-) You have many friends who all read and comment on your posts. Like V says...call them like you see them.
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Virginia Towne
By V
Keep your chin up and find something to laugh at. Anyone who doesn't care enough to want to keep track of where you are at can stop reading! I want to know because I think you are a fantastic person and hope I am half as strong as you.

By the way, after my heart attack my kids started calling the doctor numb nuts as he seemed to be disconnected from reality when dealing with me. Now I can't remember his real name. Feel free to call them as you see them.
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nancy ireland
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From a multitude of past personal experiences, I cringe at the thought of anyone in today's healthcare system who is unable to advocate for themselves and/or has no one to advocate for them! It's frightening! So go get 'em, report and that way the rest of us will learn. hugs, n
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