Peritoneal Mesothelioma

Hello “Krow”

As a Peritoneal Carcinomatosis/Ovarian Cancer Stage IV patient I can relate to how Dave is feeling and faring.  We do have similarities having to do with Cytoreductive Surgery.  Administering HIPEC treatments have been the practice at UPMC for quite a few years now.  I wanted the HIPEC treatment, but my surgeon ruled that out, and I just have to trust his judgment.  My surgery was performed by Dr. David Bartlett at the University of Pittsburgh Medical Center July 1, 2013. 

I will address some of your questions in no particular order.  As for as the abdomen goes, personally I feel like I have 3 stomachs where one used to be.  There is a feeling of “heaviness” that comes from scar tissue no doubt.  I’ve had to alter many of my clothes and expand the waist band.  For me a girdle would be too much pressure on my abdomen.  I tried a band that is recommended for pregnant women.  It did me no good.  So I have just had to give away many of my clothes because they no longer “fit.”  One thing for sure, no more “holding my stomach in” to appear thinner.  So where do the organs go without the Peritoneum and the Omentum?  Obviously anywhere they want to go.  They have more room to move around with some of those “non-essential organs” gone.  That’s what they called them.  I said, “Are you sure?  God did put them in there you know.”  But sure enough, I am faring well without them.  At age 36, I had my Uterus removed, but left my fallopian tubes and ovaries intact.  So when I had CRS, I had my ovaries, fallopian tubes, spleen, gallbladder, omentum removed and my bowels resected.                    

Sections of my intestines were removed.  Since then, I never have been able to experience “consistent regularity with the bowels”.  My oncologist always reminds me that I had major surgery and there are natural consequences to having a portion of my intestines removed.  So for me,”diarrhea and constipation” are all “friends.”  They “take turns” making me uncomfortable.  So I have both “stool softeners” and “anti-diarrheal” pills handy.  Now some days are okay, but regularity is unpredictable.  But don’t get me wrong, I am blessed to be alive, and "irregularity" is a small price to pay for life after Peritoneal Carcinomatosis.  I was diagnosed in November of 2012—Pre-op Chemo—then Cytoreductive Surgery July 1, 2013.  And God has given me many more years than I first anticipated.  I’m enjoying a good level of quality life even now although my tumor markers are increasing incrementally. 

As for Dave’s energy level, if you visited your two and a half year old twin grandsons and went grocery shopping in the same day, I wouldn’t rule out the goal of going scuba diving in the future! J  I would say it took me a good 3 months to walk two blocks, so if you went shopping this early, Dave is doing great! 

However, I am now 77.  I was 76 when I started this letter but the clock struck 12 and now I am 77, and being alive is really a “Happy Birthday.”   Just strolling along a sandy beach at sunset is my idea of exercise.  And speaking of the sun, just the other day I had an early doctor’s appointment.  The sun was shining so brightly that I had to shield my eyes.  And it occurred to me, that there are so many things we take for granted in life.  For one thing what if I were never able to see a sunrise or a sunset?  Since first my husband’s Esophageal Cancer diagnosis, and now my own, life has taken on an even deeper meaning and the beauty of God’s creation is just one of those things.  Even more precious is the bond of love for my family and friends and God.  I am truly blessed and I thank Him every day for letting me live another day.   I've read the statistics.

I’ve never returned to my “normal high-energy level” but I still have more energy than some of my friends.  I won’t name them here.  Some are just “low-energy” mixed with “laid back” or perhaps just plain “lazy” but I love all of them.    

I can relate to Dave’s extreme pain of bowel blockage, but I’ve never heard of vomiting to alleviate the pain.  I’ve had two episodes of extreme pain and abdominal swelling akin to the pain of childbirth.  I wound up in the ER two weeks in a row.  My stomach was as tight as a basketball.  My doctor said, this was indicative of an impending bowel blockage.  And indeed, a CT scan indicated “increased nodularity along the intestinal wall.”  My doctor recommended a repeat treatment of Carboplatin & Taxol.  While chemotherapy isn’t a “cure-all”, I decided to “go for it”.  Other than those two episodes, life was good.  So I finished a second round of chemo on 9/25/15.  I haven’t had one of those episodes since then.  So far—so good even though my tumor markers are showing a rapid increase of late.    

As for appetite, I didn’t have much of an appetite to begin with.  Extreme weakness was my constant companion, and at times I wondered if I would ever see another “normal day.”  But I have recovered, and even though I am terminal, I am happy to still be here.  Dave has had a major and I do mean major surgery, so don’t be discouraged.  You’re doing all the right things, and as he regains strength, he will begin to feel like himself again.  I don’t have a list of “do’s and don’ts”, it’s doing whatever I feel like doing.    My advice, "Don't put off doing the things you've dreamed of."  If you feel like doing it, do it!

But in the early days of my hospitalization, I remember the physical therapists coming in twice a day, saying “Ready to go for a walk?”  I would groan and say “Nooooo!”   “Do you have steps at home?  Okay today we’re going to practice going up and down steps.”  My body said, “Noooo”.  But each day I became a little stronger. I forced myself to do what I knew I should and made “feeling like it” ride in the back seat.   Eating ice chips basically for the first 10 days till my bowels “woke up” was an ordeal. 

What am I trying to relay to you?  Just this, Dave has “just been operated on about 5 and ½ weeks ago, so he shouldn’t be scuba diving for a while.  As for me, I developed a serious infection during the first week of surgery.  My incision broke open from the navel down.  I was on a “wound vac” for several months.  I was in the hospital for 42 days. 

I don’t know about how Dave feels when he rides in a car, but it took a long time for me to be able to ride in a car and be comfortable.  I sat on a pillow and I held one over my stomach.  Every little bump in the road hurt.  I couldn’t sit or stand for long periods of time.  But “little by little”, my strength returned.  As for sleeping, it took a long time for me to sleep all night.  Finding a comfortable sleeping position with a body full of stitches and a wound vac besides, was difficult.  I woke up several times during the night.

It is obvious that you have left no stone unturned to find the best possible treatment for Peritoneal Mesothelioma.  All that I read indicates that Cytoreductive Surgery and the HIPEC treatment prove to be the most effective treatments.  By your statement, “So few people have gone through this operation, and so few have survived peritoneal mesothelioma that there are a lot of unanswered questions about life ahead.” lets me know that you are being realistic in your approach. Living with uncertainty gives added stress when you have a rare cancer like this.

This link (http://www.mesotheliomagroup.com/mesothelioma/peritoneal) states: “…However, multiple studies have shown that patients who have cytoreduction with HIPEC experience significantly longer survival times. Some patients have survived to 5 years and a few have even lived beyond 7 years. According to a study on its clinical results, most medical centers typically report a median survival rate ranging from 30 to 90 months after a cytoreduction with HIPEC.  Ultimately, a peritoneal mesothelioma patient’s prognosis will always be unique because it’s based on a number of factors that are individually specific. These factors include:  Overall health, Cancer stage, Mesothelioma cell type.  If you’ve been diagnosed with peritoneal mesothelioma, you can take charge of your diagnosis and improve your prognosis. Living a healthy lifestyle, including eating healthy foods and getting plenty of exercise, can improve your overall health. If you’re healthy, you have a stronger immune system that can help fight mesothelioma…”

So Krow, you and Dave are doing all the right things.  May God bless you for being such a great caregiver.  It’s great to know there can be long-term survivors, so I will “hang my hat on that star” and pray God will let both Dave and me, live longer than our wildest dreams.

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV