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Things You Can Learn at the Chemo Clinic

When, on three Wednesdays out of four, I go to the Knight Cancer Institute at the Oregon Health & Science University (OHSU) for my weekly chemotherapy infusion, the view from my chair is this: (Photo credit: Kristian Foden-Vencil-OPB)

KnightCancer2l

On those days, I'm in the building to the right in this photo overlooking the construction project.

This new, state-of-the-art research facility exists thanks to Nike founder Phil Knight. In 2013, he and his wife pledged half a billion dollars to OHSU to fight cancer and to keep OHSU people like Brian Druker, the scientist who discovered the power of the cancer drug Gleevec, around to continue their research.

But, said Knight, he would do this only if OHSU could match the donation. Half a billion is a lot of money.

In what to me seems a lot like some kind of miracle, OHSU topped the goal. As the Kuni Foundation announced in July 2015:

"Gifts came in from all parts of the community, snowballing into an unstoppable movement against cancer...Children held craft sales and collected cans, sending in shoe boxes of change. Local businesses and labor unions [banded] together sending in funds. The state of Oregon agreed to invest $200 million in OHSU facilities needed to support the building expansion."

Twenty-two months later, with a $5 million donation from the Kuni Foundation, OHSU had met Phil Knight's challenge having raised a total of $508 million. Ground was broken for the new $160 million building in June 2016 and completion is scheduled for next summer.

I know this because doctors and nurses and others at the Knight Cancer Institute have told me the story and I'll get back to that in a moment. First, some smaller things I've learned there from the caregivers at OHSU.

WEIGHT LOSS
Following my Whipple procedure surgery for pancreatic cancer in June, I lost nearly 10 pounds. Well – I suppose some of that weight was half my pancreas, my entire gall bladder, all my duodenum and some smaller bits and pieces the surgeon removed. But most of it was a result of the surgery and recovery.

Plus – I hadn't known this before – cancer uses up more energy more quickly than a body without cancer. The same can be said for chemotherapy. A patient is expected to lose weight during treatment and therefore is encouraged to gain.

God knows I've worked at it. Before now, I spent a lifetime trying to keep off the same 10 or 15 pounds I repeatedly gained back. Even so, it was easier to lose that weight than to put it on this time.

Having at last reached my pre-surgery weight recently, I asked the RN at my chemo treatment last week if she could lay off the admonitions to gain more weight.

Apparently she thought I was kidding. She repeated the need to continue gaining to keep ahead of the chemo drugs' predilection to eat away at my weight.

WRINKLES
Unless one is very fat, wrinkles go hand-in-hand with growing old. I don't much mind them, especially since the cancer diagnosis: something like that strongly focuses one's attention on what is really important, and wrinkles are not.

Even so...

The wrinkles I've had until now came on slowly. A smile line. Increasing number of crinkles under my eyes. That sort of thing over time.

Since the surgery? Wow. I lost enough weight that overnight even my knees became wrinkled. My forearms are crepe-y. My belly is rippled with a long row of wrinkles. So is my butt. These are all new. (No, I'm not showing you photos.)

At the same time, however, it's weird that my waist is bigger than before. It bulges out and that brings me back to what the nurse told me.

Most of the weight I have gained is and will continue to be "unfortunately, fat," not muscle. That's just the way it is in this circumstance, she said.

My whole body has gone soft since I hadn't been able to work out for a long time following the surgery. I finally got back to my morning exercise routine two weeks ago and I'm determined to replace some of the lost muscle. We'll see, we'll see.

CANNABIS
I've been smoking weed since high school but not much in recent years because it makes me cough. The state of Oregon has allowed sale of medical marijuana for quite a while and about two years ago, they expanded to allow sale of recreational weed.

Still, as curious as I am about retail versus illegal sale, I haven't gotten around to visiting a dispensary yet. So at my chemo visit to OHSU last week, when I told the doctor that sleep is a sometime thing for me, instead of a prescription drug, I was surprised when he suggested cannabis, particularly CBD which is, apparently, the part of cannabis that, unlike THC, doesn't get you high.

"What fun is that?" I asked him and we both laughed at how strange it still sounds to hear weed recommended by a doctor.

He explained that CBD is an anti-inflammatory and has a calming effect too that could help me sleep.

Is it as weird to you as it is to me to hear a physician recommend weed? I know that Oregon doctors have issued medical marijuana cards to patients for many years but it still felt odd when it happened to me.

OHSU
Getting back to this, a couple of weeks ago, I posted a list of the many things that, even with a diagnosis as frightening as pancreatic cancer, I am grateful for. There is another I didn't mention then.

That I am being treated at the Knight Cancer Institute at OHSU. My surgeon is one of the world's leading pancreatic cancer researchers and now, with Phil Knight's donation, he is assured of continued resources.

As Nature reported, Brian Druker, who is now director of the Knight Cancer Institute,

"...aims to rapidly hire up to 30 principal investigators, and to provide researchers with a funding cushion intended to free them from the burden of constantly applying for grants...

"The institute will focus on detecting cancers early in their development, when treatments generally have a better chance of success. Druker also wants the institute to take advantage of emerging technologies to develop better tests that would reduce false diagnoses."

Just last week, the Institute hired

"Dr. Gordon B. Mills to lead precision oncology for the hospital. He will be charged with working with his team to try to figure out what combination of drugs is most effective on different kinds of tumors. And he told KXL that he can’t wait to get started in Portland, 'The opportunity to do this at a center that is innovative, flexible, and is really wanting to make a difference, is the reason why I came to Portland.'"

Toward the end of last year, the first time I visited a doctor at OHSU, I felt a sense of pride and dedication from every person I dealt with that wasn't present or, at least, not as apparent with other physicians I've known as it is at OHSU.

I can't help but think all that energy comes from knowing they are part of something big, something special they have been part of creating and know that it took so many other people who believed it them and their goals to donate all that money to make this new research facility possible.

It also helps explain why from the start all these people have made me feel safe in their hands.

Comments

You haven't spoken much about how the chemo has affected your life. I remember my brother feeling wiped out and lethargic for days after his treatments. You seem to be tolerating it well.

Ronni,
I have used cannabis for forty-nine years and also cough. It was recommended to try a vaporizer but that also produces a milder cough. My preferred method of consumption is high CBD edibles in capsule form to avoid the negative effects on my esophagus and lungs. It helps to reduce joint pain and increases sleep time by about twice what I have without it. Cannabis is an effective tool to use and will probably be legalized as soon as the Fed figures out a way to put a meter on its consumption so they can get a piece of the pie.

You have such a strong spirit! I have been using CBD in CO for the last few months to help control excruciating pain from a failed and infected knee replacement (which has since been removed and I am on the was to getting a new knee). It helps with pain (though I had to use narcotics as well) and definitely with sleep. None of my docs have been as proactive as yours, though. Curious about what form it comes to you in. I use a tincture under my tongue.
Best wishes for your treatment to be successful. Don'the let concerns about fat and body image carry off the energy your body needs to heal itself. As one survivor to another. Love to you.

Glad you are in such good, caring hands, and that you are doing so well with the hand you've been dealt. And that's, finally, the name of the game, I think. Love, blessings.

I take a tincture called “Relief” that is CBD and boy does it work! Half a dose under my tongue for 30 seconds and in less than 15 minutes my aches and pains begin to recede. A full dose makes me sleepy. I don’t like to smoke it any more because it hurts my lungs. This stuff is great. :-)

I am so happy that you are in the right place for your ordeal. Perhaps fate dealt you the correct hand when you moved back to Oregon. At least is must take some of the sting out of having to leave your beloved Big Apple.

We all hope that those dedicated people find a cure for cancer. It is such an insidious disease.

I lost 20 lbs during my chemo, weight I could well afford to lose and wish I had kept off. But it all came back. Not a diet I'd recommend to others! And not one I want to repeat. Most of the loss was due to ongoing GI problems from the chemo.

Have never tried cannabis, but living in CO, I know it will be easily and legally available if I want/need it. It obviously does wonders for some people.

Glad to hear you're doing so well and are in such expert hands.

Awww...I wanted to see pictures. It is wonderful to hear of the good use that a really wealthy person makes in order to help other people. I am so impressed with some of the billionaires - not so much, with others.

Thank you for letting us in on what's happening there in Oregon.

So glad you are in such good hands Ronni. And by all means, try the medical marijuana! I got to try it not too long ago via a friend and it's lovely. Much less harsh than what we were use to when younger, and a gentle high. I don't smoke but the medicinal grade pot is so much nicer than street pot. Enjoy 🤗

Fascinating piece all the way around, Ronni, thanks so much!

I've just recently started using CBD in a tincture. I already take a lot of ibuprofen, plus prescription pain pills. This is all about my generalized arthritis with degenerative scoliosis. I have to admit, I can't tell if the cannabis is having any effect or not. I'm using it . . . but the jury's still out on its efficacy. I was really interested to read about people who are quite clear that it has an effect.

CBDs have gotten me off opiods and Advil. No buzz (which is sad!) but no pain either. I can function without feeling high or feeling pain. Every time I see an ad for a pill to fight "opioid induced constipation" I find myself yelling Cannabis@the TV.
Hugs to you.
a/b

Ronni--I have been reading your blog for over a decade, and lived in Oregon (Salem) for 8 of those years.

I am curious about the new OHSU building. Is that on the "upper" part of the campus or the "lower" part (as the tram travels)? I can hardly believe it's been two years since we moved away.

I do know what you mean about the wrinkles. One day they're just .... there.

Hugs to you, and keep on keeping on!

Paula...
The new Knight Cancer Institute is being built on the riverfront campus. The building out my room window at OHSU Hospital after the Whipple surgery was named Knight Cancer Institute but I'm pretty sure that's temporary until the new building is finished next year.

Far out, man! Wish Kansas had medical marijuana, but they'll have to be dragged, kicking and screaming, into the current century...

I'm sure I could get off the opioids if we had the medical grass...

Again, your ability to share your experiences with us is wonderful. Thank you.

Sounds like you’re in an optimum situation for this treatment regimen you’re having which can only be positive. Your cannabis experience/effectiveness, plus that of readers here, relating oral intake vs smoking of interest as never know when a need for use could develop for myself or others. I would think intake other than by smoking would be best so as to not add respiratory problems to existing medical issues. Hope you’re continuing to have instances of healing humor and laughter in your life!

I've come across more senior folks using CBD products here in Maine. I use CBD Body Butter, tinctures, roll on..each has different mgs. It has made all the difference in my lower back pain. We have medical marijuana dispensers here where you can get CBD products and if you have a medical card, the real deal. I will say the CBD products are not particularly inexpensive, but they work for me...how I really don't totally know. I do know there are many small business that supply products and they do well $dollar wise. Lolly pops for anxiety helped a friend of mine.. continued blessings Ronni on your journey ♡♡

Many kudos to Phil Knight (also Bill Gates and Warren Buffett) for using their immense wealth to serve the common good. SO unlike others I can think of, such as The Orange Apparition, also members of his administration who seem to think it's their right to use taxpayers' money to travel on military jets. Deplorables, all!

Now that I've read comments by you, Kate G., Classof65 and others on cannabis, I might just give it a try. It's legal in WA State as well. Kate and I share what may be pretty similar back problems: spinal degeneration, scoliosis and arthritis--and they are no fun at all. I just started some new exercises from physical therapy, so maybe those + cannabis will help with the pain and make life more enjoyable. Unlike cancer, what I have isn't life-threatening, which I usually appreciate, but there are times when it can be "life-dampening".

I come late in the day to your post, but am heartened to read your post and all the comments. Like Liz I so admire the generosity of some wealthy folks. If only, it was contagious among their peers.

Ronni
By all means, go to a marijuana dispensary and tell them what you need. They will help you choose a variety that will work for you. I, too, have trouble sleeping and have arthritis, etc. I also cough and sneeze when I try to smoke street weed--it isn't worth it to me, so I quit. Then, while on a visit, I went to a dispensary in Seattle, and the kind folks there helped me choose a variety that was perfect--smooth, no cough, and I had the best night's sleep in years. Too bad it's not legal in my home state, so I have no access to it now.
For heavens sake, if it's available, legal, and prescribed by your doc, why NOT use it? I wish I could!

Linda...
To be clear, in Oregon a physician does not "prescribe" weed. Here, it is legal to buy for any reason - medical or recreational. My doctor just suggested it without need of a prescription.

Very comforting news, Ronni.

My senior friend at the ILR could probably benefit from using MM, but I believe she is way old school to even consider it.

Her arthritis is so bad she is sleeping on her couch. It's easier for her to roll off her couch than her bed.

Frustrating.

Glad that you are in, as others have noted, what sounds like an optimal environment for dealing with pancreatic cancer, receiving such stellar treatment and responding so well.

I've gotten somewhat hooked on a new program this season, which kind of surprised me, because I don't watch much television, and don't usually choose medical shows when I do. But I'm finding The Good Doctor riveting. An autistic young man who is a savant in understanding how things work, including the human body, he is an extraordinary diagnostician and his manner, which you might think would be heavy-handed from someone who doesn't like being touched himself, appears to be very light and comfortable. However, his struggle with autism provides weekly challenges. The show was filmed in Vancouver, so maybe there's something about the Pacific Northwest and a more progressive practice of medicine. If only it weren't so horribly expensive.

As far as cannabis goes, I've never been a user because I couldn't get beyond its effects on my eyes and throat. However, I would be interested in trying some of the new forms described here, especially for better sleep.

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