NOT BACK TO NORMAL – YET

Not back to normal, but can’t complain.

It’s been 2 years since a rectal cancer diagnosis, and nearly two years since accompanying surgeries and following hernia event. Life has seemed more normal at times, and at times less normal. All in all, nothing really to complain about!

Normal days I will go on walks, enjoy a good wine or beer with Matt, keep busy with chores, work on hobby art, etc. Then there are moments when I am concerned with a stubborn sore on my hernia scar that won’t heal, a lumpy and scarred Franken-belly, most uncomfortable diarrhea and gas, night sweats, hot flashes, persistent insomnia, anxiety, foggy brain.

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Hope that doesn’t happen to me! Frankenbelly

Let’s back up. Starting last summer I had a rogue suture from my closed-up ileostomy hole spring out of the skin on my belly. The suture was meant to be permanent, not absorbable. It poked out like a bee stinger, but didn’t give me any problems, really. In the fall, one year after the surgery, it was yanked out by my hernia surgeon. It healed over, and that was that. Until a few weeks later, a pimple formed and opened up, and it refused to go away.

Another month or so and a large pimple formed along the hernia scar. Jeez, what now? I called the hernia surgeon’s office, concerned, and they advised me to apply heat and try to get it to open up. It did not, but the top layer of skin became so stressed that it cracked and peeled off. Over a week, the skin became raw and then the pimple opened up and refused to go away for a month, continually oozing. I kept cleansing it and dressing it, waiting and waiting for my new insurance plan to kick in. Besides that, it was not painful, itchy or a bother, I only worried about it getting infected.

1 ½ months altogether, insurance kicked in, and finally I was able to see my GP, Dr. Yeh. Turns out I had a staph infection which would require  one week of antibiotics, and my hernia surgeon, would have to look at it again. My healthy, fit alter-ego told me, “Oh, no! Not more antibiotics! I’m being punished!!” I sincerely loath medications.

antibiotics

antibiotics

Ok, well now that I have a new insurance policy, my old hernia surgeon, Dr. Reger, is not covered so I had to find a new one, but before I did, his office cautioned that this infection might mean a whole new surgery.

I visited the new surgeon and lo and behold he pulled two gigantic, wiry sutures out of my abdomen, left over from the original hernia repair.

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Sutures in a stuffed bunny.

Side note: Jeezus! What is it about my abdomen that makes people want to poke things into it and dig around?? It’s so creepy! Every doctor I’ve seen within the last two years, it seems, can’t help themselves, they’re almost drooling as they’re hovering over my naked ab. “Hmm, there’s a hole here, let’s see where it goes, what will fit in there, what comes out of it? Fluid? Wires? Innards? Hmm!…” AAAAH! NOT cool! If Matt was there in the exam room with me, he would no doubt hit the ceiling!

When there was nothing left to pull out of that hole, he moved onto another one, but nothing came out of there. I didn’t understand why he was extracting the sutures, but then he explained that bacteria follows foreign bodies, like sutures, mesh, etc. Sometimes antibiotics are disabled by these foreign objects, and bacteria are harbored along side them. That’s bad. So removing the sutures was good (not pretty or comfortable, but good). Then he put a gigantic gauze patch on me and prescribed two more weeks of antibiotics and a two week follow-up visit. Good lord, I hope this ends soon!

No formal complaint, getting back to normal takes a while, but no more surgeries, please!

FOLLOW UP: INSURANCE BILLING

Frustrated-Angry-medical-billingRegarding medical billing, this continues the saga.

This has been a pain in my a** since the diagnosis. I hired a medical billing advocate last year whom I optimistically believed could help me with my crappy insurance plan. Maybe guide me through approaching medical billing offices and my insurance company about unfair billings, and possibly win me back some of the medical costs.

Nope. All the money I won back I did on my own. I was tired of it, too. Wasting time on hold, writing letters of complaint, examining EOB’s, bills, statements… After a while, I just paid the balances, and eventually avoided seeing doctors altogether. Thanks to the broken medical insurance system and my being forced into an inadequate insurance plan years ago, then no hope to change it. I realized I had no control over what would get billed to me. Receiving surprise bills for procedures, doctors, treatments, etc, which should have been covered and having to contest every bill, I was tired. Yep. Not cool at all, especially for a cancer survivor.

This year I was given the hope of starting a new “Cadillac” insurance plan with no regard to pre-existing conditions that was *affordable* because of Obamacare and my insurance broker, and I was going to wait for it to begin before getting anything more done!

Kiss my A**, Assurant Health ~ Hello Moda! 

ARTICLE – Colorectal Cancer and Younger Adults

Colorectal cancer is getting more attention from the science community

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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.

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CARING FOR THE PANCREAS

How to care for the pancreas

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Happy pancreas

Since learning of high blood sugar results from my annual physical, I looked up articles on caring for the pancreas.

The internet says, what pancreases like:

-      Fresh lemon juice first thing in the morning, then throughout the day (acidic fruit, yet the body treats it as alkaline)

-       Lots of fruits and vegetables

-       Lean foods, low fats

-       Beans, brans, fibers, gelatin, pectin, agar

-       Green tea

Dr. Yeh reminded me told me to eat a healthy diet and stay active. The American diet usually means heavy dinners, but this is not always best. Try to spread dinner out to smaller portions over a longer period.

Then, my mother-in-law heard on the news that everyone in America is pre-diabetic (I assume, besides those who are diabetic already). REALLY!? Why don’t you hear about this? And why would I not believe this stat? Even some of the healthiest people I know still include candy in daily diet, sugar drinks, alcohol, refined sugar and carbs. Kids trick-or-treat, have birthday cake, pop, candy with terrible ingredients and are rewarded with doughnuts larger than their heads… no wonder we grow up to be diabetics. frowny-face-high-blood-sugar

And most people aren’t “the healthiest people”, yet they live long, comfortable lives, assuming they don’t die from diabetes or cancer or vehicle accidents… Maybe this news of “high blood sugar” on my annual physical blood test is not so alarming. Maybe I can not panic about it.

So, with that in mind, my revised diet strategy is *less* ice cream, alcohol, sugar at snack time. Less quantity of food per serving with more small snacks. At least to start out, and then move into a more refined diet plan. Then I will live a long, comfortable life, assuming I don’t die from diabetes, cancer or some kind of vehicle accident!scoop-of-ice-cream

The result?

So far, after a week, I feel better! Less gas, less diarrhea and discomfort at night. That’s the biggest difference. I still eat a little too much quantity at dinner (I am quite the cook), yet compared to the previous extravagant meal and dessert routine and glass(es) of wine with accompanying discomfort, I do feel much improved!

Of course, few will argue that food is a culture. It is my culture. Matt & I eat well and we feed people who visit us very well, like *good* food. Anything in moderation, and so that is the key with this new diet plan: moderation.

Pancreas: What say you? I guess I’ll find out at the next annual physical!

ANNUAL PHYSICAL

Meeting the new primary care physician for my annual physical went well, but some discouraging results…

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New primary care physician!

Recently I changed my primary care physician. Matt and I met Dr. Susan Yeh last year when I made an urgent trip to the doctor due to one of many bladder infections I had been getting since the 2012 rectal cancer surgery. My nurse practitioner, Cathi, was not available then, but Dr. Yeh was. I was in amazing discomfort, so we could not afford to be choosy. We learned that Dr. Yeh (pronounced ‘yay’) had a specialty in colon issues (!!), AND she is covered by my insurance plan (!!!). What a jackpot!

I saw Cathi for my physical once again after that, and my feeling was, as a cancer survivor, that I am a vastly more complicated patient this year than last, particularly my colon and rectum. Time for a change. I would miss Cathi, but I needed Susan.

Dr. Yeh performed my latest annual physical, and I felt in good hands. What a relief. I could ask questions about my digestive quirks that I didn’t know who else to ask, and she could give me answers – even more, a whole range of “could be’s” relating to my body since the cancer treatments. Why are my stools runny at night? Why so much gas? What are the lumps on my belly, and what’s with the stitches poking through my skin? Since she understood the procedures used during my surgery and treatments, she could ascertain what was going on in there. Then she spent extra time with me to catch up on everything she should know of my history. 

When she went over my blood test, I scored high on blood sugar, possibly for the 2nd, 3rd year in a row. That’s not a mark you want to score high on. It’s not in the “pre-diabetic” range, but still, it’s high!

What the hell? This sucks! What’s happening to my poor body?

I can’t deny that other people my age and older (even younger) all over the world are going through this same reality check at this time of life that our body parts are wearing down. Things aren’t working ‘like they used to’. Yet my expectations of my own body are high. Higher than high blood sugar! I’m very discouraged! Especially after recovering for the last year from a major illness!!

Dr. Yeh tells me, with age it’s expected that things may not work as well as they did before. For different people some things wear down earlier and some later. Eyesight, hearing, memory, joints, liver, hair gets grey… Things wear out. It depends on family genetics, personal habits, environmental factors, etc. It is the pancreas which processes carbohydrates, fats, proteins, and it produces insulin in response to regulate sugar in the blood. Then, in a matter-of-fact tone, her advice is to keep eating a healthy diet, lots of fiber, but not too much to cause gas, and stay active.

Huh, that’s it?

I drove home slowly, a bit dazed at my new mortal imperfection.

Oh my god! My pancreas is sick!?

I could not stop thinking of it after leaving the appointment. My mind was going over and over all the naughty sugar trysts over my 40 years of living:

ben-jerrys-blood-sugar

- all the trips to the 7-11 candy isle during my babysitting years…

- all the overeating of sugar, cake, ice cream…

- all the alcohol over the years…

Sugar highs, eating till I was ill, movie candy, Ben & Jerry’s by the pint, late night Voodoo Doughnuts… I’m not sure how I am not 300 pounds today! Oh, what have I done?!

What can I do? Will my poor pancreas forgive me?

GUEST BLOG – Finding Beauty in Cancer

Friends of Kimberli – Finding Beauty in Cancer

Kimberli-Finding-Beauty-cancer

Finding Beauty Photo Shoot

This is a blog written by Kimberli Ransom, a professional photographer diagnosed with breast cancer. I met her because of our mutual friend Dan Betenbender. Dan told me I should connect with her, which I did through her blogsite, and possibly offer resources or support from my own experience with rectal cancer.

As with other cancer blogs I follow, Kimberli’s has a beautiful strength and openness and a desire to share her feelings, experiences and how she copes very creatively. I like her blog because she writes about a rich set of friends who share their expertise to help her express her fight. They contribute photography, fashion, poetry and other media. I think she is really giving her immediate community an opportunity to participate and learn, like a large-scale art project. An opportunity where all will come away with deeper connections with each other, and a deeper understanding of their feelings toward life and mortality. Really cool.

This post, The Real Thing Shoot, is a collaboration with her friend Paige, a photographer, shooting one of Kimberli’s chemotherapy sessions, and particularly capturing the tension, emotion and humorous moments between Kimberli and the hospital staff. Paige had had a major illness herself and had lost a family member to cancer, as well, and was particularly astute in capturing the light moments and the anxious moments. It is too big to add here on my blog, but very worth visiting her blog.

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Kimberli with staff

Teamwork very well done.

GUEST BLOG – Living With Chemo For Life

Living With Chemo For Life – Belle Piazza

I signed up on some email lists for cancer blogs after my diagnosis. There are so many stories out there. All of them come from some pretty harsh realities, and some really expose the heart of the writer. I remain on these email lists because I get to continually learn new levels of inspiration and compassion by reading them, yet I would not voluntarily read them had I not had my own story.

Living With Chemo for Life, I learned about today, quoted verbatim in another blog that I follow by Doug 2.0. Belle is a stage 4 rectal cancer survivor. Doug has been following her because she lives close by him, and because she has a beautiful talent for expressing herself through writing.

I wanted to post that blog here because even for me it helps to illustrate the roller coaster of feelings involved in a cancer struggle. She uses poetic analogies that most people can relate to themselves in a down-to-earth tone. I really feel the edge and the optimism that she is riding during her fight, and this is something that inspires my day and my outlook, and I want to pass along here.

By Belle Piazza

walk-each-other-home

“I’m going to run your CEA again to check on it, it’s risen quite a bit.”

“How much did it jump?” I ask my oncologist.

“It’s 70” (up from 19 at the beginning of the summer) Don’t get hung up on a number he tells me, but I know better and I can feel the tears welling up in my eyes. Increases in my CEA have always corresponded with growth of my cancer.

“I frequently hear from friends “I don’t know how you do it?” To which I think to myself, “I don’t either”. It would certainly be nice if there were a handbook for cancer patients telling us how to manage the myriad of emotional challenges we go through. I don’t see the challenges any different based on your staging of 1, 2, 3 or 4; but rather they are amplified as your number gets higher. Not to minimize those dealing with stages 1, 2 or 3; the feelings of fear and anxiety are every bit as real and overwhelming as they are for those of us with stage 4. It’s just that when you hit stage 4 (and there is no stage 5 to progress to or through), you’re pushed further yet.

“When I was first diagnosed my doctors thought I was a stage 1; possibly stage 2. My surgeon always suspected stage 3; but she couldn’t find a diagnostic test to confirm her suspicions; which turned out to be right. After surgery I was deemed cancer free and almost made it 3 years before the spots on my lungs were confirmed to be a recurrence of my original rectal cancer. When I heard the words “recurrence”, “chemo for life” and the dreaded “3 years left” my knees buckled and I fell to the floor. I had to have a nurse call a friend to give me a ride home. And then – silence.

“Tell me where you want to go” my friend said as we drove to the drug store to refill my Lorazepam script. “We’ll go wherever you want – we’ll get a room at the resort and go get massages, we’ll go to the bar – anything – where to?” But again, silence. I just wanted to go home. Caring friends all willing to talk surrounded me – but I was at a complete loss for words. I just wanted to stare at the walls and pretend none of this was happening.

“I’ve almost come to the end of “3 years left” and I’m still here. While not cured, and with my cancer slowly progressing, I’m cautiously optimistic that I still have a year or two left. And while I’m woefully unskilled to write an instruction manual on how to live with stage 4 cancer, I’ll try to offer some help and advice for those who have the misfortune of following in my footsteps.

“When I first joined The Colon Club there were a handful of members I looked up to. Bradyr, Justsing and of course Gaelen. There was Jessica, the young mother who fought so valiantly to live for her newborn daughter. There was Starbuck who just wanted to be a twenty something woman experiencing all life has to offer. Bill Llib – father, husband, Boy Scout troop leader, friend. All fought, all died. But it was their courage and determination that gave me strength – and still does. If they can do this, then so can I; even if “this” meant dying. We all need heroes. None of these beautiful people considered themselves heroes or ever wanted to be heroes. But I needed heroes to light the way for me and this is the role they played.

“For those with stage 1, 2 or 3 you have hope – hope that the disease is gone from your body forever; hope that someday your life will return to what it was pre-cancer. Knowing that life will never be the same, but hope that it can still be good. I have hope too, but hope takes on a different meaning when you’re stage 4, on chemo for life and running out of options.

“I hope that in the end my pain will be managed and when I do become incapacitated that it won’t last for long. I hope I’m not confined to a hospital bed for an extended period of time – that my passing is quick. I hope that my children and husband don’t suffer needlessly and endlessly. I hope that people remember me as a person and not a person who had cancer. I hope and I pray for strength. And somewhere in a deep dark pocket of my mind, I hope for a cure. It’s crazy, I know – but even those of us looking at grim futures still have a glimmer of hope that a miracle will take place. And really, is that any crazier than people who religiously purchase lottery tickets every week – convinced that one day their number will come up? Hope takes on many varied forms.

“While living with stage 4 isn’t where any of us want to be or choose to be – life can still be enjoyed – tremendously – in between chemo treatments and side effects. And while we often feel we are the only people in the world suffering, there is tremendous pain in this world caused by things other than cancer. Hunger, abuse, disease, poverty, oppression – the list goes on. Sometimes we all need a reality check and to acknowledge that many people suffer – daily – to a greater extent than we do. When my surgeon first told me that my pathology report showed cancer in 27 of the 38 lymph nodes she had removed, I completely fell apart and asked her “how could this be any worse?” – to which she softly replied, “there is always someone worse off than you are”.

“And so it goes. Chemo weekly. Scans quarterly; more frequent when trying a new chemo to see if it might work. Managing the myriad of side effects and assaults my body takes from the treatment designed to extend my life. Still, in between it all, there are many opportunities to live life. Granted I don’t live life the way I would have had cancer never entered my world. I’ve been detoured down roads I never would have otherwise traveled. Some of the roads take me to scary places, like the dark forest in The Wizard of Oz with mysterious creatures lurking in the shadows ready to attack. Some of the places have flying monkey’s trying to pull me apart and frightening voices screeching in my head. But other roads take me to wondrous places – like The Emerald City or the beautiful poppy fields. Last year one of the roads even took me to Kansas City!

“Whatever road you find yourself on, always look ahead. Identify heroes to help guide you, walk with you and show you the way. While hope may take on different forms, always have hope. Live life to the fullest extent possible. Surround yourself with people who support you, love you and inspire you. Life is short and for some of us it will be shorter than others. Coming to terms with that doesn’t happen over night, but in time, we adjust to our new reality. It’s not what we wanted, it’s not what we chose, but it’s the cards we’ve been dealt. Sometimes we just have to put on our poker face and make the best of a lousy hand. It doesn’t mean the game is over, it just means it’s a little more challenging.

“When my kids were little and it was time for a play date to come to an end, I always gave them the “5 minutes” heads up to let them know it was almost time to go. They acknowledged the 5-minute warning but when 5 minutes was up and it was time to go, my son would usually have a melt down. He didn’t want to leave the party – he wanted to stay and have fun. At times I have the guilty feeling of behaving like a two year old myself. I know that soon it will be my turn to leave the party and go home. It will be time to go – plain and simple. I’ll kick and scream and fight and throw a tantrum and do all I can to stay just a little longer. But even two year olds tire of this routine and eventually succumb to their destiny, pack up their toys and go home.

“When I was in my 20’s I was an avid hiker, backpacker and long distance cyclist. I taught aerobics for a couple of years and I went through a period where I was obsessed with West Coast Swing and Country Western Dancing. It was always something. Friends who were less active marveled at how I could decide on a moments notice that it was a good time to join a group of friends and backpack through The Grand Canyon. What they didn’t realize was that I didn’t achieve that fitness level over night – it took many months of training and ongoing work to maintain that fitness level. The benefits were great, but it took commitment and hard work.

“I like to think of stage 4 survivors in the same light. I didn’t reach this level of acceptance or coping overnight. I could behave like a two year old and have a complete melt down every time I get bad test results; but really, that just takes too much energy, which I don’t have. So I cry a bit, spend some time alone soaking it all up and processing it and then I do my best to move on. Some days are harder than others. It’s like hiking through the Grand Canyon. You find yourself halfway down the trail, tired, hot, sweaty and running low on water. You can sit there and cry and hope a donkey passes your way without a rider – or you can pick yourself up, dust yourself off and begin putting one foot in front of the other towards the river – where you can take off your shoes, rinse the dust off your face and replenish your water supply. Since donkeys don’t travel on most of the trails we hiked, I just kept putting one foot in front of the other until I reached my journeys end. I hope I can find the strength now that I found back then – on the trails and on the remote bike rides. And I hope that when I reach my final destination I find the relief, the peace and the comfort that each of my former travels blessed me with.”

COLLABORATION: To Blog or Not To Blog

To Blog or Not To Blog

A collaboration with Tammy Schuman of Scooter Saga

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Scooter Saga – by Tammy Schuman

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Cancer4Me – by Michelle Dennis Lattanzi

I’ve reblogged posts from Tammy Schuman before, and I have followed Tammy’s Scooter Saga for a long time. She blogs from the perspective of someone living with Spinocerebellar Ataxia (SCA), and she does a marvelous job of bringing her readers into her world of ups and downs living with ataxia, and the day-to-day challenges she faces as her disease progresses. Tammy and I have become friends through our blogs, reading about our own life journeys.

Recently Tammy approached me to do a collaborative post about two bloggers’ perspectives on what blogging is and what it does for us. Each of us wrote our own essays on the topic, and Tammy brought them together. Below is an excerpt:

To Blog or Not To Blog

TAMMY – I enjoy blogging, but never appreciated the varied ways it could be used. As I mentioned earlier, I started journaling on my sister–in–law’s recommendation and my musings morphed into a blog* (web log). Getting Skeeter changed my perspective and provided all sorts of laughable moments. It was a compatible context for serendipity, my smart mouth, and learning to deal with a disability… Read more.

MICHELLE – Since I was very young, I enjoyed writing. I have always found it a comfortable and easy way to express my thoughts. I’ve journaled off and on for most of my life, with no other goal than to think on paper. Writing is a great way to work out problems. By writing down my stream of consciousness, I can order my thoughts and analyze them, then sometimes a solution will miraculously appear!.. Read more.

It was incredibly fun, and a first attempt at a collaboration for both Tammy and me. Enjoy, and please let us know what you think.

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!

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