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!

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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!

DREAM TEAM

With every diagnosis, there’s a team…

…of specialist practitioners that come together and integrate their expertise. And there is a period after the diagnosis when you helplessly wonder, “Where do I start? What do I need? How do I find the best people who will get me through this?” and so on. Then you start soliciting your doctors, friends and acquaintances for references to find anyone who can “fix this”. You spend hours online looking up doctor names, methods, remedies, terminology, facilities, on and on. You hear tons of stories of other peoples’ experiences, call and schedule appointments, get second opinions, research more, learn more, and decide on the team. Then you put your head down and go!

 

In 2012, was diagnosed with colorectal cancer. Matt and I in LA, and my parents in Portland mined our resources and came up with a team at St. John’s Hospital in California. There was:

1)   A gastroenterologist who did the diagnoses and referrals to the other diagnostic exams and to the medical team

2)   A surgeon who would remove the cancer

3)   The radiology oncologist who formulated the radiation treatment and calibrated the Big Machine

4)   The medical oncologist who formulated the chemotherapy and monitored the blood readings.

 

So, that’s at least four individuals who would get me from diagnosis to remission.

 

The team, in my opinion, was excellent. Their offices were in the same hospital, they knew each other and worked together all the time, they all knew where their part ended and the others’ began, each great people with highly expert credentials in their field – just what I wanted! It was very secure structure for me, a first-time cancer patient who was caught off guard in an unfamiliar town. I felt very lucky.

 

Fast forward a few years to the recent liver metastases diagnosis. I had not bothered to change oncologists when Matt and I relocated to Portland because I only needed someone who could analyze and keep track of quarterly blood test results and alert me if anything alarming appeared in them. I was on a 5-year plan to maintain quarterly blood tests, annual colonoscopies and CT scans. I found a GI doctor who would perform the colonoscopies and order my scans.

 

The medical oncologist in California dropped the ball and did not keep track of me or my tests. I missed an early warning four months ago in May, and was very alarmed with the August test results. Again a cancer diagnosis caught me off guard. Matt and I find ourselves in a very similar place as two years ago, scrambling to find the qualified and capable team of specialists for this particular cancer.

 

The dream team for the current liver cancer episode would include:

1)   A gastroenterologist who diagnosed and ordered the other diagnostic exams

2)   A naturopathic physician who referred me to:

3)   A naturopathic oncologist who is expert in helping my body’s strength and pluck during the chemo and surgical treatments, and ongoing needs afterward

4)   A medical oncologist who will formulate and direct the chemotherapy regimen

5)   A surgeon specializing in the liver who will remove the cancer

 

Tomorrow morning Matt and I will meet with the first of two surgeons for strategies to remove the liver nodules. The second opinion will be next Wednesday. Way too long to wait, in my humble opinion! Hopefully a surgery date will come up within the next two weeks. I’ve met with one medical oncologist, one naturopathic oncologist, and will meet a second medical oncologist later in September.

 

Each day has its ups and downs. We are staying very busy and taking it easy when we need. Although it’s been a lot of work, I feel good about what I’ve accomplished so far.

 

Thank you to everyone for the lovely thoughts and offers of help.

GOOD NEWS OR BAD NEWS FIRST?

Which do you want to hear first, the good news or bad news?

Now that I’ve learned definitively that I have a recurrence of cancer in my liver, that I am not “in remission” anymore, that I’m facing a new episode including surgery, chemotherapy, tests, hospitals, nurses, complications, recoveries… setbacks.

“Oh my God – What the FUCK?… I mean… what the FUCK!!?” Chris, my brother-in-law, echoed the disbelief already in Matt’s and my minds when we told him over the phone of the new diagnosis. We saw him and his daughters off to the airport just yesterday, after a weekend of sunshine and great sunset meals and river playing. Everyone one was healthy and fine yesterday. Today is grim business for just us two.

Matt and I have been through this once before. Getting the diagnosis, calling doctors, family, insurance, researching everything the doctors told us for hours and worrying about what’s ahead. The difference is that this time I have WAY better insurance (thank you Obamacare!), being more familiar with the process, we are better at putting the dysfuctional worry aside. Still, at bedtime the worry and unknown inevitably come back in the dark and worms around in our minds for hours.

I always take THE BAD NEWS first:

So the back story is, per doctor’s orders, I maintain quarterly blood tests, coordinating with my oncologist in Santa Monica whom I have worked with for 2 ½ years. I saw him last in January 2014. I also maintain annual colonoscopies and CT (Computed Tomography) scans per my new gastroenterologist’s orders. All have shown good results, and to my knowledge I have been in remission for over two years. Back with the original 2012 diagnosis for colorectal cancer, I had a CT scan reveal two liver cysts which concerned the doctors that they could be metastases from the rectal tumor, yet they could also be innocuous, a normal liver cysts that lots of people have, a reaction to birth control pills or some other chemical, which are unlikely to become threatening. The 2012 PET scan showed that these spots were of no concern.

*Positron Emission Tomography (PET) is a test where a radioactive isotope introduced in the blood stream shows thermal “hot spots” where active cells appear illuminated in the results, whereas CT, or CAT, scans use a large number of 2-D radiographic images to create a 3-D image of the inside of the body.

Last week, during my second annual colonoscopy check-up, I had a precancerous polyp removed from my colon. Nothing unusual or concerning, these are common and easily removed with no further action needed. The CT scan, a few days later, showed two “nodules”, or solid masses, which were new since last year. This result combined with the most recent blood test revealed elevated CEA levels (a cancer marker), caused my GI concern. He ordered a PET scan and recommended an oncologist appointment to discuss the results. Anxiety!

The scan was on Friday afternoon. When Matt and I showed up for the exam, we were surprised to find that it was a full-body scan. Was this a mistake? The spots were on my liver, after all. But it made sense even before it was explained; of course, if the cancer could spread to my liver, then it could also spread to the lungs, the brain, the bones, anywhere. I happily did the PET, then went home thinking, this is all a big joke and they’ll see that it’s nothing! Just the same old cysts, maybe they haven’t looked at this year’s and last year’s scans side by side? I’m healthy and happy in my life now.

Then there was a bleeping holiday weekend and most offices were closed on Friday, and all offices were closed on Monday, and it was hard to get a hold of any doctors or staff to ask questions, even to make appointments. Ok, so I got an appointment with the oncologist for Tuesday, thank goodness. All we wanted to know now was what the PET results were.

liver

The PET showed very clearly hot spots where the two liver nodules were (meaning activity, meaning cancer!!). Do you know how big a liver is? I really had no idea. It’s pretty huge! Anyway, there’s one nodule on the left and one on the right. The one on the left (or my right) is 3x3x4 cm, and the other is 2.5cm.

Holy lordy lord! That sounds really big to me. Considering we are talking one year ago that there was nothing but the cysts, and the CEA level in the blood was not alarming until now, either, these nodules sound really unreasonably large. Listening to what the doctor was telling me, all the worries I’d had during the night over the past weekend were coming back, and as I tried to focus on his words, I was intensely aware of my heart rate and how sharp my awareness was. Especially for Matt, who I knew was sitting next to me sweating outwardly and panicking inwardly.

THE GOOD NEWS IS:

frowny-face-high-blood-sugarThe nodules are compact and “localized” meaning they will be easily removed with surgery, and I will “still have a lot of liver left”, said the doctor. “Oh good!” I thought, although I like my whole liver, ayayay… frowny face.

There are no other occurrences than the two liver nodules.

The cancer has not proliferated throughout the liver, in which case they wouldn’t even attempt surgery, just attack with lots and lots of chemo.

So, I guess for a bad scenario, it could be worse! The recommendation of Dr. Look, the oncologist is to operate immediately to get the cancer out, and then they will know exactly what kind of cancer they are dealing with and will design a chemotherapy for it. This one will likely be systemic rather than targeted, so I’ll be shopping for wigs and warm headwear.

Now, I do have a second opinion with another oncologist scheduled for later this week, so, more to come.

Oh, my poor Matt. When we met I was the perfect picture of health and vitality. I had few needs, was a great friend, partner, lover, playmate, I added value to his life by being his foundation, loving unconditionally and taking care of anything he needed the best way I could. Now I feel like a real bummer! A disappointment. I expected that I would be healthy and strong into old age, take care of my darling husband, my parents, anyone else who needed me, and I’m being taken care of, now, in my 40s. Although I am staying positive, it’s hard not to not go to the dark places.

What the heck is my body doing? This is completely out of the plan! Not that there was a “plan” per se. I feel alienated from my body, like it’s letting me down, mysteriously letting illnesses get in, getting weak. But it’s my body. It’s life. And just when I was getting everything back in sync, seeing a NP, a Naturopathic Physician, who is helping me reestablish an equilibrium with diet and lifestyle, peace of mind, etc. Sometimes, she said during a recent appointment, these diseases are not caused by immediate environment, or just the previous generation or two. These diseases can go back 3-4 generations to the conditions our ancestors experienced and telegraphed through the generations. Also, as was brought to my attention,that the ancient Egyptian remains show evidence of cancer.

Makes sense to me, because how could some of the healthiest people still get terminal illnesses? The answer is, it’s beyond them. This notion, at least, allows me to believe I really didn’t do anything “wrong”, and I can blame my ancestors. Hee hee. Small comfort.

Good news and bad news aside, ONWARD! A new chapter begins.

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