Buh-Bye Chemo Port

Isn’t it time to bid that chemo port buh-bye?

It’s just over two years since ending the chemo regimen from the liver cancer metastasis. Today I am alive and thriving!

 

It wasn’t all easy, those two years. It’s amazing because one would think that finishing chemo would mean life can go back to normal, a healthy and productive life, free of disease, medications, doctor appointments, worry and fear, just like that. Well, on the surface I have those things now, more or less. I do see the doctor less, I am in better shape than I’ve been in years, there is a more predictable schedule and fewer emergencies than while treatments were ongoing.

Still, because of the “cancer club membership” I now have, I am married to the medical system. I’m dependent on doctors, on healthcare, and on insurance. Of course I am getting older… so there’s that, too, but before cancer I was an easy patient and pretty smug about it. I liked that I could see my doctor once per year or less! I liked the bod being solid and reliable. Now if I go more than two months without seeing a doctor, I feel insecure and usually have saved up a million concerns to discuss overwhelming the appointment.

That’s life in the fast lane! But I’ll take it. Gratefully.

 

As for having more time to myself:

Yeah, I have that too, but jeez, something happened since cancer: a rather extensive daily routine of taking care of myself! I credit graduation from cancer for starting some really good habits, like:

  • Spending 10 minutes on my teeth every night because my gums have receded so much, I’m just trying to keep my teeth! I have dental cleanings quarterly.
  • I exercise twice a day, and I like that, but I also feel obligated to stay strong to combat bone loss from the radiation and chemo. Incidentally, the osteoporosis diagnosis a year and a half ago (thinning bones) has been downgraded to osteopenia (less critical), I believe from a combination of supplements and exercise. Thank goodness my bones are rebuilding themselves as I was told they may not.
  • I have supplements to take at various times of the day.
  • I make a daily concoction of juices to cleanse my liver of all the supplements residues.
  • Clean my glasses, which recently became necessary.
  • I cook all meals and they are nutrition that Matt and I need specifically.
  • Then paying, scanning, and filing the medical bills for financial fitness as well.

That makes a full day just spent on myself!

 

Longer term:

There are maintenance blood tests, colonoscopies, and scans (oh my!). The results have been mostly routine, but each, more than ever, are followed by a period of nervous introspection. A nagging fear that the test will not come out normal, and I will have to start over again; breaking the news of a whole new diagnosis to my family and community, interviewing doctors, filling out health questionnaires, filling my schedule with doctors, therapies, new uncertainties, waiting for never-ending test results, and worrying about insurance eligibility! My imagination takes over and goes to the worst places. This never happened before my second occurrence of cancer, but darn it if the second occurrence has really changed my view of mortality.

i-have-this-nagging-feeling_LRG

Fighting cancer ages people. Not only the bone deterioration, receding gums, spiraling hormones, it also makes you look older. I think I’ve aged visibly and maybe look 14 years older than I did 3-4 years ago, which puts me in the same era as my husband! While I generally applaud age and the success of achieving a “ripe old age”, I’m mixed about it happening rapidly and unnaturally from medical treatments. Ok, so the new lines in my face are battle scars. They are for the naturally aging people, too, but I’m not used to seeing them on my face when 3-4 years ago I looked much younger. Also, age is a state of mind. True, and I feel older in the sense that I am wiser, I have more boundaries than I used to, and maybe a little more cynical. But the things that I love, I love so much more, have so much more sincere gratitude for kind acts, friendships, noticing the colors and relationships in the world around me.

Although emergencies haven’t entirely stopped, they are fewer and less consequential. I had a surprise root canal a few days ago. That was a first, and there will be more firsts, but at least I know that whatever it is, it will be an easy fix! I believe that given time my anxiety will decrease, I won’t even remember this worrisome era.

 

Finally, yesterday I had my chemo port removed!

It was a rather short, uneventful procedure in-office, rather than in the hospital. I could have chosen the hospital where they would put me under, but it really is a simple procedure in the clinic, cheaper, takes a fraction of the time, and I didn’t have to trouble anyone to drive me.

Power.Port.patient.shoulderPower.Port.diagram

Some people keep their port in long after the disease is gone. I guess ports can stay in indefinitely, and people may go four years, five years, nine years before taking them out. I never intended to keep it in for two years, but I just never had time to get it removed, and one more surgical procedure was just unappealing. My blood cancer level did jump a bit, and for a month I played it really conservative with diet, supplements and rest. That did the trick, because the levels fell again on their own.

I’ve got this. It’s time. I am ready to be free of the port. I no longer need to harbor the symbol that connects me to the disease I beat twice. Onward!

 

Buh-buy chemo port!

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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!

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!

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

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!

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.

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