POUR SOME CHEMO ON ME*

*Just a little ‘80’s metal mood. 

First of all, let me tell ya –

Don't get sick in the Fall

Don’t get sick in the Fall

Don’t get sick in the Fall. Everyone you need help from is on vacation then. Just FYI.

Gawd. It’s taken way too long since the diagnosis of the cancer recurrence (Aug 25th-ish) to get a surgeon chosen, get an oncologist and to get started on the treatments. Although I was waiting a whole two weeks for appointments with the oncologists I wanted to meet due to lengthy September vacations (and who can blame them?), luck happened and late last Friday afternoon Dr. Look (my original Portland onc) called to make sure I am getting my needs met. Turns out that HE is NOT on vacation and IS available to start my treatments after an appointment the following Monday.

So today I met Dr. Look for the outlay. He says chemo will be the same treatment no matter which oncologist I opt for. He is also open to collaborating with a complimentary care physician (naturopath).

Regimen:

The combination therapy he described is 3-4 different drugs, Oxaliplatin, 5FU pump, Leucovorin, and I think FOLFOX, too. To infuse all of these, they will install a port, a small device set underneath the skin on my upper chest with a catheter that connects to a vein where all intravenous chemicals/fluids can go in and blood samples can be drawn as needed. I will wear a pump for two days after each infusion (talk about a ball-and-chain), then have it removed for the remainder of the two week cycles. At about 2 months, I take a break from the infusions, and have the surgery, then resume chemo after a healing period. The remaining duration of the infusions will be determined by results from CT scans.

Side Effects:

The first treatment is likely to be the worst, and the first few days, especially, for nausea, neuropathy (tingling and cold sensitivity in extremities, mouth), some hair loss (but not necessarily all of it), diarrhea, anemia, other unpleasantness.

When will I begin:

This Wednesday they will install the port at the hospital, I will go home the same day. Wednesday night I take a class on chemotherapy (!!) – and it’s 2 hours! Ugh, I hope they make it fun, especially since it’s the same day I have the port surgery. Then the very next morning, Thursday, I get a pump hooked up and the first of the infusions at the oncology clinic. Saturday I will have it removed for the remaining two weeks until the next infusion.

I am working out a meeting with the complimentary care physician now, and will post an update on that soon.

So, here goes!get-the-ball-rolling

ARTICLE – Colorectal Cancer and Younger Adults

Colorectal cancer is getting more attention from the science community

colorectal-cancer-young-adult

The medical community is shining more light on the causes behind the spike in colorectal cancer diagnoses in younger adults. This article was sent to me by family friend and local surgeon, Dr. Earl Schuman. Because cancer is now a part of my life, as with some of my peers and my generation of family, it’s worth sharing:

Colorectal cancer incidence rising sharply among younger adults

By: SUSAN LONDON, Frontline Medical Communications

SAN FRANCISCO – The incidence of colorectal cancer is rising sharply among younger adults in the United States, a study showed.

Researchers analyzed Surveillance, Epidemiology, and End Results (SEER) data for 383,241 patients in whom colorectal cancer was diagnosed between 1975 and 2010.

The results showed that the age-adjusted incidence rate of colorectal cancer fell steadily among patients aged 50 years and older at diagnosis, lead author Dr. Christina E. Bailey, a surgical oncology fellow at the M.D. Anderson Cancer Center in Houston, reported in a poster session at the annual Gastrointestinal Cancers Symposium. But the rate rose among younger patients.

The annual percentage change in the age-adjusted incidence rate of colorectal cancer during the 35-year period was a significant –0.92 in the cohort overall. In stratified analyses, the annual percentage change fell significantly among patients aged 50-74 at diagnosis (–0.97), and aged 75 years and older at diagnosis (–1.15). But it rose among patients aged 35-49 at diagnosis (0.41) and especially among patients aged 20-34 at diagnosis (1.99).

The findings were similar for colon cancer separately (with strongest results seen for disease that was distant at diagnosis) and for rectal/rectosigmoid cancer separately.

A predictive model suggested that if the observed trends persist between 2010 and 2030, the incidences of colon cancer and of rectal/rectosigmoid cancer will rise by 90% and 124%, respectively, among 20- to 34-year-olds, and by 28% and 46%, respectively, among 35- to 49-year-olds.

Much of the decreasing incidence among older adults “can be attributed to the fact that screening is recommended beginning at the age of 50,” Dr. Bailey commented in an interview.

“We saw dramatic rises in the predicted incidences of both colon and rectal cancer in our younger cohort that point out that further studies need to be done to determine why this is happening and what can we do now to prevent this trajectory from occurring in the future,” she said at the symposium, sponsored by the American Society of Clinical Oncology.

Likely explanations for this sharp uptick, she suggested, include increasing population levels of obesity and physical inactivity, and consumption of a diet high in fat and red meat – factors implicated as risks for colorectal cancer.

Another possibility is that primary care physicians are now more alert for this cancer in young patients with symptoms such as rectal bleeding, which previously may have been attributed to conditions such as hemorrhoids, delaying diagnosis until an older age.

Recommendations still call for routine colorectal cancer screening only in those patients younger than age 50 who have risk factors such as familial adenomatous polyposis and Lynch syndrome, Dr. Bailey noted. And even though the incidence is rising in the younger age groups, it is still considerably lower than it is among people aged 50 years and older.

Dr. Bailey said she had no relevant financial disclosures.

seer-logo

MAINTENANCE

maintenance-cancer“Your annual exam sounds like taking the car in for maintenance.  They “flush the lines” and “blow the pipes”, then do some diagnostics.  The mechanic then tells you that your car may have a few dings and scars on the outside but still looks pretty darn good.  The engine is running well after their “tune-up”.  It may backfire once in a while and is a little slower going up a long hill, but it gets there.”

– Dr. Earl Schuman

I love this analogy because:

the human body = mechanics = plumbing = gardening, etc…

All systems are like, and can be used to explain each other. By making analogies like this, our great fears, such as mortality or failure, can be put into a familiar framework and therefore seem less scary.

I’ve mentioned Dr. Earl Schuman in previous posts. He is the family friend who has coached me through major life medical decisions, physical and emotional changes, throughout my 2012 colorectal cancer episode. He has regularly kept up with my writings and offered encouragement and advice, even with a busy work and home life.

Since I have earned good health marks and moved on to a more routine existence, I mistakenly assume that I must be far from Dr. Earl Schuman’s mind. Our original connection is through my dad’s cousin Bonnie’s college roommate and lifelong friend, Tammy, who married Earl (what, do you want a diagram?). Aunt Bonnie lives in California, and when I was diagnosed, word traveled to Bonnie who referred us to Tammy, a retired nurse, and Earl, a general surgeon in Portland, to advise me on how I should proceed. He did not have to help. But I came with no expectations and no clue! That’s where Earl shined!

I don’t know where to begin to thank Earl. Over the course of my treatments, Matt and I called in panic once or twice, plus a few times to run our research past him to see if we were on track making decisions about my treatment. I would email him updates. And then at times he would just check in. It was truly like having a guardian angel sitting by somewhere in the ethosphere.

Since achieving wellness, and even before, I have followed Tammy Schuman’s blog, Scooter Saga. She writes about life with Spinocerebellar Ataxia (SCA), from which she began suffering in her 40’s and which forced her to retire early from her nursing career because of loss of muscle control, balance, fine motor coordination. Tammy’s blog is a portal into a world where adapting to every-day surroundings with an ever-changing muscle control is the new normal. And then to do it with grace, gratitude and laughter makes it a true inspiration. Tammy makes her experience so easy to digest, everyone should read along with Scooter Saga! I’ve been able to connect with Tammy through her blog, and feel that I’ve become friends not only with Earl, but also with Tammy.

Daily, and in their own way, the two are making the world a better place, and reminding the rest of us to keep the scary stuff in perspective!

1 YEAR REVIEW: HOW DID IT GO?

Health Check: 1 Year Review

I went in to do my 1-year maintenance colonoscopy at Providence Milwaukie Hospital about two weeks ago (well, it was more like a 1-1/4 year colonoscopy after  scheduling/insurance reviews, etc. Heck!). So I finally got in to do it. Hell-upon-hell, I can’t wait until I can spread these out to three years instead of annually (after about a 5-year maintenance period). The prep is just so dang uncomfortable. It was the kind where you have to fast from morning, then drink 1-1/2 gallon of terrible tasting solution over a 5-hour period, ten ounces at a time. I was so waterlogged, I felt sick and didn’t finish the whole bottle. But by that time nothing was coming out of me but clear water, so heck with it.

The good news came right away. After the exam Dr. Poorman said that there were no masses or concerning features, although he mentioned seeing some diverticulosis, an asymptomatic irritation of the lining of the lower bowel, typical of people my age and older. It is nothing to be alarmed about, and he recommended eating more fiber. Good grief, I how much more fiber can I possibly eat given my high-fiber diet?

Then he recommended a CT scan to look into surrounding tissue and organs, also just a maintenance exam. So I went through the scheduling and insurance review rigamaroll, fortunately I could schedule for the following week.

The CT scan requires a fast for four hours, ok, and then an hour before the procedure a liquid prep of 16 ounces of contrast solution, which I remember tasting worse the last time than this time. I guess I was really hungry?

The actual procedure is pretty quick, and the radiology technician was awesome at explaining the whole process so patiently, professionally and thoroughly. Everything went smoothly, including the IV. I think only one before this has ever been so painless, woohoo! So then a few days later, the office called to reconfirm the earlier test results that there was nothing outstanding shown in the scans. Double WOOHOO!

Happy news. So that will do me for another year.

Wow, I’ve passed all my 1-year anniversaries

–      Diagnosis (Feb 23)

–      Colon resect/j-pouch/ileostomy (May 23)

–      Ileostomy take-down (Jul 11).

One more anniversary coming up:  The hernia surgery (Oct 15).

Now, here I am

It is all a memory, and getting more distant. Just some lingering reminders like the scars on my abdomen (battle wounds), some extra diarrhea (punishment for eating the wrong things), more gas (hmm, endearing), some shortage of energy (compared to BC – before cancer), and being initiated as a statistic in the ever-growing colorectal cancer club!

Well, it could be worse!

SUPPORTING MY BIGGEST SUPPORT

3/10/12 Sat PM

How’s Matt Feeling?

Thank goodness for George Carlin. When things are low, it’s George Carlin therapy.

Because Matt is my support, wonderfully loving and extraordinarily protective, he takes on lots of stress due to my new illness. He puts in a lot of energy driving me to appointments, being my friend, cooking for me, keeping neighbors updated, and thus sacrificing his projects and obligations, etc.

I try to remind him to be easy on himself because we’ve had a big change with my diagnosis added to the stresses that existed already. With so much on his plate, I completely understand being easily frustrated and tense. he always seems to rebound back to my darling man. He was open when I told him of a counselor available at St Johns for free. That way, at least I can learn what I can do to support my mate, after all, we are a team in this game together.

2 days of chemo, and 3 days of radiation. I get weekends off of radiation. I feel like I should feel ‘poisoned‘ today because of the chemo pill regimen, but I don’t. Not sure what accounts for that, but I’m grateful!

My mom forwards me positive messages from friends in Portland. It’s very nice to be in touch, even indirectly. They appreciate my updates and humor. I think it goes a long way to making people comfortable about such a journey, which is very mysterious, in most cases. I have to say, my influences are Lance Armstrong, Olivia Newton-John, and others who are open and reach out to help people understand their condition, feelings around a bad diagnosis.

HA HA! P.E.T. & ULTRASOUND

Testing Day!

Today I am radioactive! Perfect way to spend the Leap Year. I went for a PET scan, where I spend 30 minutes in a tube. I fell asleep while in there. Guess I was not too stressed about this, but it goes to show, it can be a very relaxing experience, as at a spa.

Also got an ultrasound and I had to FORCE myself to not laugh, because it tickles! I could NOT get the tech to join my ha ha’s, she had important work to do! These tests should clarify the stage and possible metastases (spreading).

TODAY’S A DIFFERENT DAY

2/27/12 Mon. AM

This morning as early as a 4am bathroom trip, I felt different. I noticed very clearly an ‘elevated’ feeling. I felt the energy of dozens (?) of people praying for and thinking of me since the diagnosis 3 days ago. I imagined myself wearing a loose, flowing wrap billowing in a breeze. Just the spirit form of my self. I felt my journey was to begin now.

Then, upon wake-up this morning, I imagined myself a soldier marching into gunfire. Suddenly I felt scared; an anxious unease in my gut. I started to cry, then I told myself to put it out of my mind. All my community, friends and family, looking out for me; Matt constantly covering me, holding me, feeling for me… I must head straight into my battle.

Today is different.

Today Matt and I will drive in to the GI follow-up where time will speed up, where I will choose to get my care in Portland or in LA. I will send an announcement to my list. I will research surgeon recommendations, medical facilities, insurance guides, and either start packing for Portland or not?

NOTIFYING KIN

2/25/12 Sat. am

Yesterday I spent the day talking with friends and family, by email and phone, discussing my thoughts and feelings, and the hard facts about my diagnosis of colon cancer. This will take a lot of time, I can tell. I sent an email out to a list of people who I felt should know. Of course there were a lot of people I missed, so had to keep resending the same message to individuals.

Immediately I got a lot of responses, a few phone calls, probably more messages will be on my cell. I talked to my parents separately in the morning. My parents must be feeling disconnected by the distance (Portland vs LA). What can they do? They took the news pretty well. Matt has been the spokesperson because he greatly skilled at and accustomed to explaining very detailed topics and recalling technical info. He & I presented the news in a way that my parents would feel comfortable that we were handling the next steps as well as possible. Understandably concerned and with a lot of questions, they would have a lot of thinking to do.

All other responses came back eager to help out any way they could, were very surprised by the diagnosis and shared much compassion. That’s where my energy was most spent, and I felt it important to connect with my community to provide reassurance. Matt spent a great deal of time researching all he could find about my diagnosis and the medical system. This is one of his great strengths, as well as a form of coping for him.

By the end of the day, Matt & I were exhausted, emotionally drained. Looking ahead to 2 more days of anticipating the follow-up GI appointment, could time go any slower?

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