COLONOSCOPY IV

Colonoscopy IV is finished!

For a 2-day prep/recovery, the procedure goes rather quickly. I was in at 8:30am and out by 9:10am.

champagne_toastThe doctor had pleasing news when I woke from twilight: clean as a whistle. No polyps, nothing unusual. Hallelujah! Ever since colon cancer in 2012, part of my maintenance plan is annual colonoscopies and scans. I’m on 4 of 5, so after next year’s exam, I can move out to 1 every 3 years, yet will probably continue the annual scans and quarterly blood tests (also normal maintenance protocol) for five more years.

For a polyp garden (my colon), the crop was bad this year. Nevermind the chemo cleanse I got for 8+ months. So, anyway, I have no worries there.

I feel like an easy patient again!

BUILDING UP RESERVES

My current job is building up reserves…

yoga_with_adriene

“Yoga with Adriene”, I call my “YouTube Yoga” routine.

Some snapshots of cancer recovery:

May

…was great! Chemo finished exactly three months ago from today on April 29. I spent May feeling just exactly as I’d hoped: grateful, rejuvenated, optimistic, gaining energy and ready for summer activities to begin! Of course it did not last beyond that, but I still felt thankful to be done with the bi-weekly routine of going in to the clinic for chemo treatments, the bedraggled energy and sickness and restarting my fitness routine over and over again. Whew! My oncologist was pleased to release me from “maintenance” chemo obligations because of how well the cancer had responded to the treatments.

June

… I’d disappointingly began experiencing some miserable myalgia, a persistent muscle soreness from head to toe, concentrating in my shoulder/neck area, and resulting in numb hands, hot, shooting pains in my wrists, palms and fingers. The only time I could escape it was lying still in bed. It would let up for a while after exercising, especially post-yoga, but would come back in a short time.

cupping-chinese-medicine

“Cupping” – Chinese Medicine

Initially, I thought the pain was lactic acid build-up due to serious dedication to my fitness routine (walking, light biking or yoga). I’d drink more water, and stretch to alleviate the tension. I began taking a day off in between workouts; I restarted acupuncture; I asked my various doctors about it. One told me to drink more electrolytes, one recommended acupuncture, massage, “cupping” (a Chinese medicine treatment of introducing hickeys to the painful spots, which I did try), hot wet towels, supplements… Another suggested a physical therapist, a chiropractor, massage and acupuncture. And still another recommended supplements and gave me additional appropriate minerals in my nutritional IV’s. So I tried (and am still trying) all of these.

Do I get an “A” for effort?

July

I have been letting off of some physical activity, upping supplements and seeing an orthopedic doctor. Gawl! What ever is going to get this pain under control? I can say that I “get” chronic pain now! I was feeling really impatient and fatigued from the pain and stiffness, and frankly discouraged and depressed.

Finally, a recommendation from my naturopathic physician, Dr. Dickinson. She deals with adrenal, neurotransmitter, cancer rehab and PT. I should increase the amino acid supplements (and quite probably what my complimentary oncologist put in my IV as well), the pain is 85% gone! Much MUCH better now at the end of July. My muscles still require extra time to recover from kneeling, getting out of bed, looking over my shoulders, etc, but my days are now tolerable. Apparently, with the fitness, I was “using up all my reserves”. My body, still dealing with a heavy, toxic chemo load in the deep muscle tissues, was having trouble keeping up with supply and demand of aminos and minerals! Dr. Dickinson urged that just because I will start experiencing more energy, not to use it. The idea is to build up the reserves. (Never mind the 20-mile bike ride at the coast last weekend with m’dad… But still I’m feeling ok!)

I also saw a physical therapist, which pointed out a misalignment of ribs near my right shoulder. This could explain why the pain was concentrating there. Muscle myalgia would pull on the ribs and neck and with them out of alignment, would just cause misery. Thinking back, there was a bike accident where I cracked a clavicle. That was 5 years ago. That would do it, I suppose. Now we’ll see what the orthopedist says next week.

The other bit o’ good news I’ll share today:

Cancer tumor markers in my blood (CEA, which show the body’s response to fighting cancer) have been in normal range for months (0-2.5). The better news is that over the months, they continue to drop lower within the normal range (1.7 to 1.3 to 1.1)!

In late August I will meet with Dr. Look, my oncologist, and maybe spread out the tests to every three months; I also get my annual colonoscopy. Although I’ve been healthy and continually improving, each test is a stress to me and my loved ones. But, I’m on the right track.

WOW oh WOW! I feel so amazingly grateful for the gracious attentiveness shown to me by friends and family out in the world and through Facebook during this time. The love is being swallowed up by my gut and heart each day, and is building up my reserves!

CHEMO – FINAL ROUND 12 OF 12

Monday began the final round of chemo. That makes 12 in all! Whew! Remarkable!

champagne_toast

Monday morning I went in to meet with my oncologist, Dr. Look, get bloodwork, take vitals, chemo infusion and IV fluids, like usual. The primary thing I wanted to know, a conundrum we had discussed last meeting, was what the partners said about my case. Dr. Look was confident that my case was unique because of how well the cancer responded to the treatments and surgery. He felt I may not need to go through a maintenance chemo regimen, which would have gone on indefinitely, same routine with fewer chemical ingredients.

To review:

  • My cancer tumor markers (aka Carcinoembryonoic Antogen or CEA for short) came down to normal range before my surgery in early January (hallelujah!)
  • The surgery was a neat success with clear margins (no cancer cells found in the margin of tissue removed along with the tumors)
  • I went through 6 more rounds of chemo post-surgery after I was declared NED (no evidence of disease)

I should be pretty squeaky clean. Therefore there is no baseline disease to monitor new cancer activity, and Dr. Look felt it would be of no benefit and possibly cause more discomfort and harm than good. The partners at Compass Oncology agreed. THAT, dear readers, is the best news all year.

Coming up, I will have a baseline CT scan in three weeks to compare with subsequent scans in the coming years. I will have bloodwork done quarterly, colonoscopies done annually and scans probably annually or maybe 6 months.

So with caution, I will be celebrating in the coming weeks as this final round wears off. I’m not much on celebrating my own achievements. Although I like the idea, I always feel that things could change at any time, so I feel better mushing my celebrations in with other celebrations happening around the same time, ie. holidays, birthdays, housewarming parties… just not my own celebration – I prefer just hitting the hiking trails, the kayaking, making art, just playing for a while. What to do without all those pesky doctor appointments all the time!

Although I was already drinking tiny amounts of wine between treatments (hey, when in Rome, right? And I’m always in proverbial Rome with my family), I felt that a glass would be helpful mentally and do little harm in my already struggling liver. After about a week of no alcohol, I do moderately miss it. But I have to say, I have some simple virgin drinks which I drink at night that I do love. Recipes may be shared! And from my lovely friend Bettina, now in Dusseldorf Germany, mailed some lovely, refreshing tea mixes that I binge on daily. Don’t ask what’s in them unless you want a photograph of the label, because it’s all in German.

The Tempest is over, the laundry list of complaints left over are all annoying ones. Drippy nose; bloody mucous; mild sinus congestion; unpredictable, urgent, frequent bowel movements; constipation (all chemo-driven); shingles are still numb, but only scars now; neuropathy in the souls of my feet; dry skin. What else? It all blends together, but I’m still functional!

I feel I’ve been pretty blessed in spite of this cancer event. I keep telling people that I aught to be sicker than I am, but I’ve had such good complementary care from my naturopathic doctor team, my medical doctors have been so on the ball in my case, I’ve been able to do most anything that I want, with exception of some side effect discomfort, fatigue and so on, I feel pretty energetic most of the time. Life for Matt and I has been on a good track, and we are very happy with what we have and who we hang out with! Can you believe all this can happen in the face of a devastating disease? I absolutely cannot, yet here we are. We are very grateful for the benefits life has for us right now. And I am so truly thankful for my family and friendships and all the love I feel from around the world! Even making new friends and reacquainting with old friends who are going through similar trials as me has given me new resolve to get through my own.

I cannot ask for more after this final round 12, except for a permanent state of NED!

THE TEMPEST

We all experienced a mix of rain and sun here in Portland, Oregon, but my rain was a tempest of illnesses that hit all at once.

Well, I guess I get my comeuppance for having so many “good days” during this cancer process. Why? Because of the phenomenal weather this year and last, and the “feel good” days, as though I’m a thief making off with gold since the diagnosis of metastatic liver cancer last August.

Because I am immunodeficient following three very successful chemo treatments and resulting low red and white blood counts, it should not be surprising, yet is very discouraging, to have contracted three new illnesses at the same time. Each comes with its own misery, and altogether it overwhelms my usual optimism. I’ve earned pouting rights. So, let’s get to it!

Which came first? The sinus infection or shingles?

They both began around the same time two weeks ago. The sinus infection is very painful in the part right behind my forehead. Because, Dear Reader, you and I know each other pretty well, I will tell you this: The shingles is ghastly. I look like my butt is molding.

Peripheral Neuropathy

Velcro-lined slippers

Velcro-lined slippers

I’ve had neuropathy for a long time now, and is positively making my feet puffy, numb and hypersensitive. It’s like wearing nice, cushy slippers lined with Velcro.

Did you get your flu shot?

Finally, a pretty violent flu took over all else with all classic flu symptoms, but intensified by the other ailments. I don’t get flu shots unless I need ’em. ‘Cause if I don’t my immunodeficient butt get spanked with the flu. There were lots of muscle spasms and pain, twitches, tremors, chills, dizziness, projectile vomiting and foggy brain.

I want to complain so badly (and I have), but really, what can you do?

medication-supplements

Taking the nighttime regimen.
Photograph courtesy Matt

Whine and moan! As soon as you realize you are getting sick, you can’t just halt life and choose a different direction to avoid the illness, you can only sit and wait for the sick train to move in and then submit to it. Medicate? Well, yes, there are remedies, or at least relief meds that will take the misery down a notch or two, such as a flu shot, oh, wait, that didn’t really work for ANYBODY this year. In normal health, I refuse medications and supplements. Boy have I succumbed to that rap! Everyone who gets sick has to go through it, fully.

I am pretty good at taking care of my sick body, even before cancer. I have a knack for it. Because I believe the body’s immunity is really pretty amazing, I believe in supporting it every day. Thus, I’ve studied nutrition and fitness for years out of interest. Not that it gives me any real advantages because even if I follow a pretty strict health protocol, I still have to go through any illness I do get, fully.

The good news: I’m no longer at death’s door. Friday I was more vertical. Today, Saturday, I feel in good humor and know the worst is behind me. The neuropathy is getting better. When I couldn’t keep anything down for three days, I had to stop all meds, including anti-neuropathy supplements for a while. Even ginger beer, a known nausea remedy, failed me. I was malnourished and dehydrated – perfect conditions for an illness to go from zero to sixty in no time flat. I got up to over 103 degree temp, now down to… what? 93 degrees F? Ugh, really? Am I dead? I’m the last to know, always!! HA! Let’s try that again… That’s better. 98.2, more normal.

The sinus infection was really silent, but at its worst I had a headache of shooting pains which refused to submit to all pain relievers I could tolerate taking, for 3 days. I don’t know what migraines are like, I’ve never had one. That’s how I imagine them to feel, but do not want to offend any chronic migraine sufferers. No sleep and debilitating pain with no control. Kind of like that? I don’t know. Can I amputate my head? Please?

Shingles, I’m getting test results back early next week, but treating them now, started as a sore, painful spot on my nether regions, then spread up to my gluteus maximus, now is making it’s way toward my brain!! Not really, but spots are appearing on my back, neck and arm, all on the left side. And the welts are swollen and massively sore because I sit on them!! Can I get a butt transplant?!

boneless_chicken_ranch

I was NOT IN A GOOD MOOD, as my husband will attest! I laid in bed like a boneless chicken. Matt felt so helpless, as did I, but I was just too miserable to care about anything!

I know this is a very self-indulgent post, and I’m sorry for that. I don’t ever complain, so I am taking the stage. I guess I had to celebrate this occasion with a long rant. Since yesterday I am feeling so much better. I’m quite fatigued, and possibly contagious, so I’m going back to my nest for a few more days.

So I will close with a little entertainment: The Eurythmics’ “Here Comes The Rain Again”. It’s such a timeless song, and Annie Lennox is my muse.

Banishing the Tempest! Yay for recuperation!!

ROUND 9 OF 12

Finishing up chemo round 9 of 12.

nutritional_iv_therapy

Nutritional IV Therapy

The chemo pump came off yesterday. Round 9 of 12 means that I am half way through the post-op “just-in-case” chemo.

Today I feel slowed down a bit, and a few other discomforts like neuropathy in my feet and hands, and a new rash, but nowhere you can see! I will be low energy for a few days as the medicine works its way through the system, then expect to feel pretty good after that. I’ve been able to cook, clean, help Matt with the taxes, plant some seeds for the greenhouse, and repot a few new plants from the nursery in celebration of spring! Always mood brightening activities for a sunny day!

One week off!

At the beginning of the week in my oncology meeting, Dr. Look noted my low blood count numbers and postponed my next chemo treatment by one week. By that time, my marrow will have caught up on blood cell production, and I should make it cleanly through the subsequent treatments. Apparently, this is about the time most patients on this same regimen need a break for the same reason. While I am thankful for this move, I’m also eager to get the dang things done! But there you go, so I will enjoy the extra chemo-free week.

The gratitude!

All in all, I am very thankful for treatments to be going so smoothly, that I have rather mild side effects and a lot of energy in between treatments. I owe this mainly to two things: the wonderful support of my friends and family! Yahoo! The lovely calls and comments on social media fill my energy and healing reservoir up! Also, my nutritional IV therapy which I get from my naturopathic oncologist, Dr. Panutich, a few days prior to my chemo treatments. The link is a Dr. Oz article, it is cautionary, and rightfully so, however I feel I have a good reason to be using nutritional IVs. Without these, I doubt I would be upright, and I certainly won’t feel so energetic in between chemotherapies. This is no placebo, this therapy works reliably for my condition.

The nutrients mixed in with this IV, as it is explained to me, are minerals and amino acids which protect healthy cells in the body and agitate the cancer cells for more vulnerability to the chemo treatments. Prior to surgery, the cancer tumor markers in my blood samples responded strongly to the chemo and other therapies I am doing. The IV is formulated based on the side effects I experienced with the previous treatment, such as nausea, neuropathy, fatigue, etc.

The rest is pure mysterious magic! That’s the update, and thanks to great friends and family connections!

MY HUSBAND, MY WIFE

I awoke this afternoon to a call from Matt at the grocery store, asking what else I wanted besides the items on the grocery list he had. He went down the list and told me what they had, what they were out of, and how the quality was. What he couldn’t find he asked a nearby produce clerk while I listened. Shop completed, he thanked the clerk and told me he’d see me at home soon.

It was just so cute!! I felt so proud and happy. He’s taken my role with grace and no complaints. And it’s hard work, I know, I’ve done it for 6 years in various living arrangements.

This is the job I do for Matt regularly, but in my absence, my husband makes it happen!

obscured_sunset

DISCHARGED!

Yesterday I was discharged from the hospital around 1pm.

Finally, according to my surgeon, my health was stable, I was mobile, eating, pee-ing, and just waiting. He said (and think Barack Obama‘s voice),

“At this point, you’re gonna do better at home… You see, we’re in a hospital where there are lots of people coming in and out all day long. Each person that comes in, raises the risk of infection. At home, you will be more comfortable, you’ll get more rest. Just get on home.”

Did you hear it? Obama’s voice? I did!

Matt took a few detours for groceries and medications on the way home, then he excitedly got to work on chicken soup in the pressure cooker. Remembering a prior conversation about what I really need and want, he made this soup extra brothy for me, and chunky for him, and we could dial our own chicken soup consistency to perfection. And it was soooo gooood! We can’t find that soup anywhere but The End of the Road Café (us).

I overdid it unpacking and helping clean things, but we exhaustedly sat and watched a movie before succumbing to the night. Oh, yes, and then I had a physical, emotional breakdown. Very unpleasant. It actually started in the hospital the day before. Crying, lots of crying, frustration that things weren’t going my way, fear that I wasn’t recovering properly. At home, it just boiled over, and I was overwhelmed with tears for a few hours, for no reason. That must be the pain pills.

Over night I slept like a rock until 3am. I woke and felt like a spayed cat, unable to move but laboriously, and I felt every inch of that incision. I got up and took 3 Ibuprofen to take the edge off, and fell asleep. At 5:30am I told Matt to get me a couple of the prescription pain pills. By the pain scale, I was 8 or 9. Fortunately, that’s all it took and I was asleep again. That is pain you don’t want to meet face to face. It steals your soul.

But the darned narcotics; no sign of a bowel movement!

portland_ohsu_hospital

POST-OP DAY 3: Sleeping Bowels

Today, Sunday, I began feeling alert, Post-op Day 3.

Ah, wellness! I’m starting to come out of the fog; anesthesia flushing from my brain and system! No more IV fluids. More tests passed, more tubes removed. Right now, for example, I’m only hooked up to my iPhone. More and more, the hospital staff are leaving me alone (not that they weren’t all lovely people, I just wasn’t in the mindspace to make friends), and I will probably be free to go home tomorrow, the 12th. Poor Matt went home with a terrible cold which cropped up after his flu shot, so we are currently ambulating in different places. Boy did he miss me!

So, why am I still in the hospital? There is one last thing that I hope will not turn into a major complication. My bowels are still not passing anything, liquid or solid. In 2012 this same thing happened a couple of times after surgeries. My sleeping bowels took an incredibly long time to wake up, from days to weeks, and it is frightfully uncomfortable. I was ill-advised at that time to start eating “whatever I want” immediately following surgery, and that resulted in lockdown of my bowels.

This time I knew better, so I stuck with a liquid diet for the first three days.

The staff has advanced me to solids foods, but while I could use the nutrition, I’m afraid of compaction!cactus on rock wall

D-DAY: Down to Business

OHSU-Kohler-Pavilion

OHSU-Kohler-Pavilion

Matt got us to the hospital on time for D-Day,

…in spite of OHSU’s confusing, hilltop campus. It’s astounding; can you believe they built a hospital up here? It was quiet, dark and cold at 5:30am. I arrived clean (inside and out, thanks to that special body soap) and dressed simply and purposefully. Matt & I were a team, at times a comical duo, and in spite of the D-Day reality of the procedure, it was little worry to us as we bustled to gather belongings we would need at the hospital for about 5 days.

wet_dog_nose

Wet dog nose

After admitting, the nurse took me back to the pre-op waiting room and gave me moist, medicated towels that I was supposed to meticulously rub over my whole body. It felt like dog nose on the skin because when it dried, there was still an invisible tacky residue. “I’ve never, ever been this clean,” I thought.

Cancer_Institute_Team

Knight Cancer Institute Team

Each one of the surgical team came in at different times to introduce themselves, describe course of action for this procedure, the potential complications and answer questions. The procedure would last 5 hours, including:

1) Resection of two tumors on the outer tips of two lobes of the liver

2) Visual exam and surgical fondling of the whole liver to check for unusual masses or spots.

3) Finally, an ultrasound of the liver to look closer and deeper into the tissue than the hand and eye can.

And then I would wait in the recovery room for an hour or more for monitoring before I could see anybody, then I will see Matt and my parents before getting moved to my recovery unit. After that I will either go to the ICU (intensive care unit) for over-night observation (pretty routine in liver cases, but not always necessary), or I will go to a regular old room. IV’s placed, then the Anesthesiologist, a big teddy bear with jovial grin, went over his whole procedure.

All set to go

Matt & I said our goodbyes, and I was wheeled gently back to the OR (operating room) where the whole team was bustling about confidently getting ready for this complicated surgery. Some were familiar from the prep room, and others were introduced to me as they helped me shimmy to the operating table, and I faded out.

Again, both Matt and I have been through this more than we care to discuss, so a whole lot of mystery has been cleared up by our personal experience. We knew what to ask, and to some extent, what decisions to make.

Later on

I learned that the procedure was simplified because there was nothing new and unusual found in the liver, the chemo and complimentary treatments shrank the tumors down so he could remove the tumors with “good margins” (tissue surrounding the tumor is taken in case cancer cells traveled outside the tumors, and still leave large portion of my liver!

OHSU-Kohler-Pavilion-terrace

Many walks along this terrace

From Recovery, I was moved into a regular old room! But I guess it was not in the cancer ward, so the second night I was moved up to be among my kin. Not a stellar view, but where this hospital is situated, all kinds of cool weather effects happen all the time. I saw a double rainbow, lots of rolling fog banks between the trees and buildings, what a great place for pictures! The food is pretty good (!!), my expectations were low, so I am very impressed. Matt stayed one more night, and the lack of privacy drove him nuts, he couldn’t sleep, and he felt a cold coming on. But he was so gung ho to be my personal caretaker! Jeez, really, there will be plenty of time for that at home, Sweetie. So, we decided the hospital could take care of me, and my husband could be his own wife and recuperate at home.

A successful D-Day down and behind me! Each day is easier, and I can see progress. As long as I can pass gas by tomorrow, I can go home.

Tee hee. Truly, that’s what I’m waiting on.

POST-HOLIDAY PRE-OP

Finally, the Post-holiday pre-op I’ve been waiting for!

Although the whole month of December was my month off of any heavy-duty treatments, the month flew by! I made sure to participate in everything I could during that month, including a showing of my art photography, a final round of chemo, lots of family events, a spontaneous Christmas dinner and New Year dinner at my house. Inevitably, I was way too stressed out.

cancer-supplements-spreadsheet

Keeping track of supplements!

Then, about two weeks before surgery,Dr. Elena Panutich, my complementary care oncologist, gave me a diet and supplement order to help me tolerate the surgery, and to help with recovery afterward. I was able to find most supplements that I needed through the medicinary staff at NCNM (National College of Naturopathic Medicine), and created a spreadsheet to keep track of them. I joined a gym and started yoga once per week and had a personal trainer consultation. With surgery day advancing, I did a 2-day colon cleanse diet, then a 2-day low residue diet, then a clear liquid diet the day before surgery. The holidays were just a near memory, but I still had holiday obligations, so no time to sit around! I felt good and strong and ready.national college of naturopathic medicine

Then on Sunday before D-Day, I caught a cold. Could I avoid the cold, or could I at least be completely over it before Thursday? Fortunately, Monday and Tuesday were the worst of it, Wednesday I probably wasn’t contagious any more, and by Thursday morning I felt ready again!

Wednesday January 7th, Matt & I went into the OHSU clinic for pre-op testing and meet with the surgeon, Dr. Billingsley. I passed all the physical tests (EKG included). The doctor seemed quite confident in the success of the procedure.

So long as we got to the hospital the next day, I could relinquish responsibility for my self-care to the surgical and hospital teams knowing I did MY best.

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