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.

COMING BACK ONLINE

I’m doing exceptionally well since coming back home from the hospital three days ago. Appetite is back and bowels are finally online (I mean, not online, ha ha, thank goodness…), functional.

See? I told you not to worry!

I’ve been writing the entire time, but nothing published until now. So, I will begin posting updates from the time in the hospital.

The good news from here is the hospital sent me home in excellent condition, healthy, well, and with a good prognosis on full recovery. Now the baton is in my hands, and Matt’s. At this time, I feel best staying home and clear of that horrid H3N2 flu. Rather than having guests over, Matt and I had our first “visit”, a chat on FaceTime, with his daughter Chloe, and that worked out great!

Stay tuned…

GlassSuds

HAPPY NEW YEAR UPDATE

Hello All!

I haven’t updated publicly on where I am in the cancer treatments in a really long time. Sorry. I’ve been avoiding the FB rabbit hole while maniacally getting Hollarday preparations done. Tee hee.

Trust me, although I’ve had the month off from chemo, I’m still dealing with some medical stuff, nothing serious, just some discomforts and inconveniences!

By all accounts (family, friends, doctors) I am doing really well. I feel well; exercising, healthy appetite, seeing friends and celebrating *most* holiday events. Woohoo!

Right now I’m looking at surgery preps given by my complementary care oncologist – 4 pages of diets, supplements, etc, before and after surgery. Whoa… well it’s all good for me at least! Starting to think about what I will need after surgery.

The surgery is scheduled for Jan 8. No anxiety yet (that should come a day or two prior). Actually, it’s all going according to my plan, so I am very comfortable as things are. Wednesday, the 7th I sit down with the surgeon and finalize things. That’s it! It’s up to him after that! No pressure, Dr. Billngsley!

I’m expecting the very finest surgical work and exemplary follow-up care! I am doing my best, after all.

happy new year

Happy New Year and Ald Lang Syne

MRI DAY – WHAT ARE THOSE STRANGE SOUNDS?

Here we are at Thanksgiving! The weather in Portland, Oregon is pleasantly overcast, mild and dry. I am ALL KINDS OF EXCITED for Thanksgiving weekend’s activities! Seeing the long-lost extended family at dinner tomorrow, then catching up with friends on the weekend, should be enough for the sick lady! Lately, the cache of social activities is pretty anemic, so bring on the holidays!

Matt spent today happily at work in the yard making improvements, building and organizing, his favorite things to do. I had an MRI. And let me tell you about that!

mri-colorectal-cancerIn spite of dropping cancer tumor markers, there is ever more to worry about. Beyond recent CT and blood tests Dr. Look requested that I do an MRI to “get some further definition”, because of a few new, unusual spots in my liver. Although he did not show concern, I decided I’d better go ahead with it. So, we’ll see what those are when the results come back in a few days.

Today was the MRI. MRI stands for Magnetic Resonance Imaging and the nice thing is they use no radiation, but magnetic fields and radiowaves to create the image of my liver! My, how well-documented my body will be after all this.

It was surprisingly easy, when compared to the prep for other more miserable exams. There was a 4-hour fast before the exam, I could wear my street clothes (sans any kind of metal). I was a little nervous that there was some metal implant I’d forgotten about from one of my previous procedures, and I thought back… no, I was ready. An IV was placed in my arm and headphones on for music (I chose the news), the contrast solution was injected and I listened as the live vocal prompts interrupted the news broadcast and the table slid in and out of the tube with me on it. What a crazy experience! It took an hour or so for a sequence of inhale-hold exercises while the MRI machine wailed an impressive variety of short electronic boops and beeps.

Besides that, today there is still some lingering muscle and mental fatigue and an occasional upset stomach. If it gets empty, it gets upset. I’ve noticed something since being on chemotherapy. Taste for food tends to rotate in phases. One problem with chemo is it damages taste buds and skews the flavor of foods. Foods that were my favorite before (like, everything) now make me nauseous just to think about. Not only that, the association of how food tasted while on chemo can haunt a patient long after chemo is finished. So, I guess if I was going to diet, now would be the time because I won’t know what I’m missing!

ON THAT NOTE, HAPPY THANKSGIVING TO EVERYONE! May it be a day to relax, reflect and be grateful.

CHEMO IV

Round IV of Chemo – the lead up and follow up.

11/4/14 Tuesday

I’m anticipating the next chemo round coming up later this week. I feel very good. Not 100%, but I can do anything I need to, I can and want to exercise, I’m productive, and I’m eating healthy portions! On the other hand, I notice less energy, fatigue more easily, phantom nausea 1ce/day or so, and I’m very foggy (losing train of thought in conversations, etc). Photography is coming along as a new hobby. Even though I am fond of my images, I am still trigger shy about ordering any prints. My mind tells me that as soon as they get blown up to actual art piece size, they will turn hideous compared to what’s on my computer screen. But that’s just paranoia.

Marijuana legalized today. This is very good omen for all the dispensaries out there!

11/6/14 Thursday

Chemo Day, Round IV

Yesterday Matt and I used as a fun day! Starting with a noon-time movie at Lloyd Cinema with dear friend Frank, we saw a great movie called “St. Vincent”. Casting was excellent (starring Bill Murray), story excellent, great humor, drama, relationships and unpredictable. I love a good movie, period. Then Matt & I drove Frank downtown, and he left to do his errands, and Matt & I walked around downtown admiring the energy, buying coffees, watching and chatting with people on the street corners. Then on to dinner with my parents. We took a walk after dinner in my old neighborhood to the park to play on some fun, new playground equipment. It was really a wonderful, relaxed day, with little thought for the Chemo session the next morning.

At the chemo session I got my vitals tested and port prepped and visited my oncologist. He could already tell me the results of the blood test, and blood cell counts look low, but safe, so we could continue with chemo. We discussed the changes in the IV to avoid the nausea for this round. He cautioned that at this point (round 4) my bone marrow is getting fatigued and is not producing blood cells, red or white, as quickly as before. This will affect my immunity, so I must be extra cautious about germs in public places. I also learned from my nurse that my exuberant attempts to gain weight when I feel well and hungry are not all necessary, and this is because the IV’s I’m given are chock full of calories to help boost my energy and tolerance of the medicine. No wonder I am gaining weight instead of losing it! …Foiled again!!

11/7/14 Friday

Community Acupuncture Day! I was a bit slow this morning, the day after chemo day. Nausea started last night, but fortunately I was able to get ahead of it with a few vial puffs of the medical marijuana vaporizer pen. It makes my lungs hurt and tastes horrible, but then there wasn’t a nausea problem. Until the toke, I was kind of a waste upstairs in bed. I ate a lovely meal that Matt cooked, and we watched a really good vampire movie. An aside: Aside from the vampire theme, which I’m guessing by now everyone is tired of (at least, I can speak for myself), this movie starred some wonderful, yet lesser known, actors. The movie was surprisingly thrilling, suspenseful and sweet with good relationships; another good one! (Called, “Let Me In”). Because of a vampire/witch novel gifted to me by Bonnie Bennett, a long-time, dear family friend, I could catch Matt up on the background of vampires and witches as I knew it, which gave the movie more depth and understanding. Matt was really pleased that I knew about vampires.

Today I had acupuncture, and I felt very relaxed while there. Afterward, I learned from Dr. Look’s office that my cancer marker is down since last month. A drop from 48 to 19.2 points, so it’s dropped over half in a month! The combination of the chemo, the medical marijuana oil, the nutrient support IV therapy, the cancer-fighting supplements, all must be working! High five! Do you hear that, Mary in New York?

I feel good today, spunky, energetic, yet not up to normal. I came home from the grocery store and did some cleaning, made pancakes (for lunch. Funny cravings during times of crisis!), Matt walked in for a short visit and remarked on the aroma of food and how much he loves that and loves me. I spent some time weeding in the garden for some fresh air. Now I am writing in bed with a cup of strong tea.

No nausea to complain of to this point, but then there’s always tomorrow…

COMPLEMENTARY MEDICINE, HEALING HABITS: Week 3

Complementary medicine and other healing habits I get to try…

complimentary-medicine

The healing power of food

It’s been about three weeks since beginning chemo treatments for this liver metastases I’ve got, and nearly two months since diagnosis. The first two treatments were NOT SEXY. I did not tolerate them so well. Even with making extreme efforts to help each treatment go better, I have not seen any improvements.

It’s the nausea I’m most concerned with. The first two days of a treatment are fine, then when the chemo pump comes off is when the nausea sets in. Then I don’t want to eat or drink, which causes the side effects to be even worse. To start, I began with two prescription anti-nausea meds, plus one that was infused along with the chemo. Then I was prescribed another, I bought two herbal anti-nausea tinctures, fresh ginger, ginger tea and candied ginger. Plus I had the medicinal marijuana oil and vaporizer pen. If any of those don’t work, than the others will, right? None of it seems to work on those nausea days, so then I must wait to be productive until the chemo has settled out of my system.

Starting out, I found it extraordinarily difficult to keep a medication list because it was continually going out of date faster than I could print them out, yet it has been helpful. New symptoms, new supplements, new medications, more symptoms, medications to counteract the symptoms, etc, get it? I surrender! You know when you go to a new doctor office, you fill out patient intake paperwork, which includes a medical history, a list of current medications, etc. My medication list was just too long, so I’ve typed and printed a list of my prescription meds, supplements, how and when I take them, what dose, strength and duration. Now this handy list I print and give to the doctor will help determine which medications will conflict with which.

Also, I was getting stuffed full of pills each day, and how am I to know the ones need, which ones are working? My complimentary care oncologist went over the whole list and marked the ones I could leave out of the regimen for now, and ones that will be most helpful. That took the quantity of supplements down to a far more manageable half quantity, thank goodness.

Other side effects have included extreme fatigue, body aches (flu-like), neuropathy affecting finger tips, lips, teeth, constipation, diarrhea.

Holistic treatments to augment chemotherapy:

support_iv_cancerSupport IV therapy – infusion at Dr. Panutich’s office (my complementary care oncologist), and this contains amino acids, minerals, vitamins. It will do two things: agitate the cancer cells so the chemo acts more effectively, and nourish the healthy cells by protecting digestive lining (which tends to get burnt out from the chemo), muscle strength and soreness, dehydration, immune support.

acupuncture_needles_sticking Out from Feet

Acupuncture & Community Acupuncture

Acupuncture – two sessions per week; one with my naturopathic doctor, Dr. Shaver, and one at a community acupuncture session (Group acupuncture? Really?). After the first treatment, I did not notice a difference. After the second and third, however, I felt very relaxed, pain-free, and I do believe that with the chemo side effects, the acupuncture will work – we’ll see!

Medical Cannabis Oil

Medical Cannabis Oil

Medical Cannabis oil – a really, really potent concentrate of the leaf. Just a dabble of this makes my head spin, and I take it at night when I’m going to sleep.

vaporizer-pen

Vaporizer Pen – Medical Cannabis

The Pen – this is like an e-cigarette, except it is filled with marijuana oil, no nicotine. This should provide relief for nausea almost instantly. Again, we’ll see!

Continued exercise – strengthening, stretching, cardio, meditation. All are keeping my spirits and strength up and allowing me to feel accomplished.

Healing Habits:

I’ve been asked whether I follow any special diet, if I’m taking anything special for treatments, and yes, I am. Mostly, I am pretty moderate, but I do avoid alcohol, caffeine, sugar, grains and dairy. I drink some when at a celebration, I can’t get by without some sugar, because it makes me happy. Grains, pasta, etc, I substitute yams. Matt and I harvest from the garden for most of our food. It’s sort-of a non-strict Paleo diet, the goal is to eat nutrient dense foods. Of course everyone has their food fetishes, their “needs”, but this is a good overall lifestyle. Along with the healing food, getting some creative time, some writing, visiting with friends and family, wearing comfy clothes, “getting out”, taking naps, and…

…just a spoon full of sugar helps the medicine go down!

spoonful_of_sugar

WHAT’S WORSE THAN LOUSY? Week 1

Week 1

Man oh man, I want to eat greasy cheese so badly!! But my challenge today is to successfully keep an anti-nausea pill down, and then, maybe some pretzels! Gourmet bliss…

So, since I got on the fast track chemo plan, here’s what’s happened:

port-insertion

How the port works

Wednesday AM: Port placed under the skin on my upper chest.

Wednesday PM: Chemo Class. Almost two hours (!!)

Thursday AM: Infusion of steroids, fluids, anti-nausea med, and chemotherapy drugs. Portable pump hooked up to my port. All told, about 3 hours, plus 1 hour of oncology consult.

Friday: Did fine, exercised in the AM, some afternoon nausea, then went to dinner with Matt & my parents. Getting used to pump and tube dangling at my side making sounds like an automatic soap dispenser every 60 sec.

Saturday: Vomit, walk, eat some, drive to oncology clinic to get pump removed, fluids infused. Vomit again. Home, anti-nausea pill, vomit, sip water, vomit again, another anti-nausea pill, spoon of applesauce, ginger tea, vomit some more. Ok, what am I doing wrong here!!

Boy, did things change in a hurry! I was told at the clinic that the anti-nausea pills help one to feel not so nauseous, but not help with the vomiting. Huh? Oh great. >:-( I guess this will take a lot of experimentation. This, they remind me, is just the beginning. The meds will have a cumulative effect, then I’ll go from feeling lousy to feeling, what’s worse than lousy? Guess, I will let you know!

Matt is very sensitive and feels so sadly that he sees my misery and cannot protect me from it. I cannot reassure him, but I have to say, he is really showing strength, being gentle, unlike his usual exuberant self. It is not easy for a loving partner to stand by helpless.

In the meantime, I could not be happier than to lay motionless all day long in my bed in silence!! Getting taken care of, and dreaming about foods I miss. The little things!

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

SECOND OPINION FOR SURGERY

Second opinion brought to you by… Barack Obama!?

Wow, oh, wow. That was a reeeeally long week! There was one week scheduled between the first surgeon meeting and the 2nd opinion, and when you’re not having fun, time does NOT fly by.

So, the 2nd opinion meeting was with a specialist in liver surgery at OHSU, Dr. Kevin Billingsley. First impressions told us we like this doctor. He was very easy to be around, inspired security and confidence, had a slightly different approach than the first surgeon, yet it made sense to Matt and I.

~ AND get this ~

President_Barack_Obama

barack-billingsley

You can’t deny, when you talk with him for a few minutes, that he looks, acts and sounds like President Barack Obama. No kidding! The pictures do not show the resemblance like meeting the doctor face to face, but his manor is direct, attention undivided, he expresses himself clearly and thoroughly, and he has a very friendly personality. What do you think? They could be brothers! Just sayin’. Barack Billingsley… or Dr. Billingsley Obama… Heh, a little fun.

The Approach

Dr. Billingsley’s approach was slightly different from Dr. Sheppard in that he prefers starting out with chemotherapy, a FOLFOX systemic chemo for 1 ½ months. This would zap me from head to toe and get all the rogue cancer cells in hiding. Next, surgical resecting of the liver, and finally a follow-up with chemo. This approach will A) shrink the tumors making surgical removal easier and more effective, B) At surgery time he will be able to see how well the tumors responded to the chemo and change to a more effective regimen for the follow-up therapy, if necessary.

Dr. Billingsley was very reassuring and optimistic about the recovery from this procedure being much easier than the colorectal resects I had done 2+ years ago, because that was a much more complicated surgery, more parts of my system were involved, for example, and there was more risk of infection. With this liver procedure, not only will the liver fully regenerate to it’s original size and function, but the odds are better now (compared to the last time, even) that the cancer will be abolished for good. So, that’s good news, too.

Next, I have appointments with two oncologists, in separate offices, set up for two weeks from now. Honestly, I believe we need more doctors because this waiting-around thing is for the dogs. It absolutely does not fit into my plan!

Both Matt & I feel pretty comfortable with this new approach, and the Dream Team is coming together!

Also, an update on the oncologist in California – he received my formal poison pen letter regarding my missing blood test results that would have warned me earlier of the cancer recurrence, and he called me immediately. He was extremely regretful that the error happened, however he explained that the results were nowhere to be found in his office, and upon ordering a copy from the testing lab, there was no doctor specified on the records for return of the test, so it never got sent and it fell into a black hole, nobody noticed. So it looks like more of a slip-up on the lab’s side. *Sigh* again, water under the bridge, and I gotta make sure that everybody is doing their job!

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