Filling the Glass

full glassWhen I started down the breast cancer road, I began a rather unhealthy relationship with statistics.  Over and over I googled and searched the breast cancer websites, including the research related ones. What were the survival rates for Stage II cancer?  For triple negative?  In 5 years, and in 10?  Then when my cancer came back, it all got very, very scary.  What was my stage?  What were the survival rates for Stage IV triple negative breast cancer? OMG, I’m gonna die – that was my response when I started seeing, just about everywhere, that the 5 year survival rate for Stage IV breast cancer was 20%.  That’s one woman out of five.

I knew that I was doing everything possible to fight the cancer.  Although it hadn’t actually metastasized to distant points or organs, we went with a treatment plan that assumed that it was spread through my body and just wouldn’t be seen until the tumors had reached a detectable size.  The years of high surveillance with PET scans and brain MRI’s made me feel as if I were still in the 80% bucket.  My glass seemed pretty damn empty.

But recently, I’ve begun to see my glass as full.  I am one of the survivors.  I am one of the 20%.  I am still alive. I mightn’t be the same person I was pre-cancer, but by God I’m still here.

But, and this is a big one, a glass is filled with two things: fluid and air.  When I was recently talking about this transformation in my thinking during a breakout session at a survival event, I was asked if there were any downside to my new way of looking at my cancer. Without a second thought, I replied, “Yes, I know those other 4 women.”  I remember and honor Alaina, Angela, Beverly, and Carol, all from my online support group, all of whom lost their fight with triple negative breast cancer.

I’m glad to be here. This transformation in my thinking is another facet of my guiding principle – get busy living or get busy dying. Oh, and to stay hydrated!

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Chemo Induced Neuropathy Research

I completed phase 2 of the chemo induced neuropathy(CIN) research a few weeks ago.  Although it was a pain in the butt to drive to San Francisco 4 times a week for 2 weeks, I quite enjoyed being out and about doing things.  I also rediscovered the joys of books on tapes and podcasts.

This phase was looking at the effectiveness of a near infrared light device on treating CIN.  It is already approved for diabetic neuropathy, but the physical mechanism for CIN is different so it has to be studied separately. It required 8 visits over 2 weeks, treatment with the light machine every visit, a daily pain/sensation diary, and lots of blood work and testing.

Neither I nor the researchers I met with knew which arm I was randomized into.  Someone came in every day and checked the switch on the machine, then my feet were strapped in and the light show commenced.  Even if I was not getting the treatment, the lights still went on when the machine was turned on. The machine was a custom-built prototype that sat in a framework that was about 1 yard square. There were straps and sensors and a place to put my feet.  The machine ran for about 10 minutes each session.  I was going to try to sneak a photo but decided that perhaps that was indiscreet.

Just about every day I had some sort of testing.  After the 4 poke fiasco at getting blood drawn, I asked if they could draw from my port, which made the next three tests much more smooth.  I had the sensation tests several times, during which I think that I had even less response than the first tests, then the balance tests again.  I think that I did better on those tests because the more I did them, the more I figured out what specific skills I had to draw on to be successful, like standing up very tall during the test on the squishy surface.

Yet again, I found myself inside my head too much during the testing.  This time, I was unsure about what I was supposed to be feeling, and worried about the placebo effect.  Was I not getting treatment and imagining new sensations? Did that make me look stupid? Was I getting treatment and it wasn’t effective? What exactly was I supposed to be feeling? I take a lot of medication to control the pain, so there really wasn’t any way to determine if the machine was lessening any symptoms.  Reduction in numbness?  That was hard for me to determine, and if I did imagine any reduction, it meant pain sensations crept in.  But overall the researchers were very happy with me.  They knew that I was trying hard and that I made a good effort to communicate what was going on.

I won’t ever know whether or not I actually got treatment, but I will get a copy of the final study report. If it turns out to be effective, then it’s something that I will be able to try out when it’s commercialized.  If not, then that’s good information as well.  Being in the study made me feel like I was contributing to important advancement of knowledge, and all it cost me was some time and a few unpleasant sensations.  Well worth it, I think.

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test-tubesAs a survivor of my bouts with breast cancer, it just makes sense to me to participate in any research where I can contribute to the body of knowledge about breast cancer, and hopefully to change the future for the better.

I’ve kind of participated in Kaiser Permanente’s long term survivorship study.  I’m not all that good about filling in all of the paperwork and doing the body measurements, but I do what I can.  I’ve also enrolled as a participant in Dr. Susan Love’s Army of Women.  I’m one of many women who have registered and provided some health information to be contacted for breast cancer research.  One of the studies I did tested for the KRAS variant, which may become a significant marker for breast and ovarian cancers.

I recently found a new study in a local breast cancer support newsletter, looking for women who had Taxanes or platinum chemo regimens and who subsequently developed chemo-induced neuropathy for a study run out of UC San Francisco. Since I qualified on every level (Taxol+Carboplatin=>significant neuropathy), I contacted them and was invited up to San Francisco for a two hour testing session.

The testing was interesting.  There was a lot of poking at my hands, legs and feet, including determining if I could tell the difference between a cold or a room temperature touch, if a sharp object felt sharp or just registered as pressure, if I could register vibrations at various sites, and if I could tell when they touched me with a series of fine to coarse filaments – all with my eyes closed.  I also had to try to walk a straight line, turn in circles, and in one particularly difficult exercise, move my head from right to left to a ticking beat while walking in a straight line.

I failed a lot of the tests.  Or at least, I had difficulty completing the tasks or feeling the stimuli.  At least they were finally able to get some blood out of me after several attempts.

The first phase is comparing women with neuropathy with women without it.  There may be a biological marker.  I’m told that they are still looking for women who have been through these chemos who did not develop neuropathy. They pay $200 if you’re interested!

I’m halfway through phase 2 of the study, where they look at the effectiveness of a treatment on foot neuropathy. I’ll update next week with how that study went.  Maybe they’ll even let me take a picture of the apparatus.  But for now, here’s a photo of the view from the UCSF parking structure on a beautiful California spring day.  If you squint, you can even see the Golden Gate Bridge in the distance.


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Surveillance, Remission, and Moving On

Surveillance after breast cancer treatment is a bit of a fraught topic.  Most women are dismayed when they go from a high degree of medical interaction during their treatment phase to almost being thrown out the door once they conclude the recommended surgery/chemo/radiation plan.  “I’m not ready for this.  Why aren’t they testing me to see if the cancer comes back?  Don’t they care any more about me?”

There are two bodies of research work that explain why our oncologists follow this path:

  1. The research by Dr. Susan Love that shows that finding cancer that has come back does not result in better outcomes (i.e survivability).  It means that the patient has to live with the knowledge that their cancer is now incurable for longer.
  2. The recommendations of the American Society of Clinical Oncology that state (emphasis mine):

Regular history, physical examination, and mammography are recommended for breast cancer follow-up. Physical examinations should be performed every 3 to 6 months for the first 3 years, every 6 to 12 months for years 4 and 5, and annually thereafter. For women who have undergone breast-conserving surgery, a post-treatment mammogram should be obtained 1 year after the initial mammogram and at least 6 months after completion of radiation therapy. Thereafter, unless otherwise indicated, a yearly mammographic evaluation should be performed. The use of complete blood counts, chemistry panels, bone scans, chest radiographs, liver ultrasounds, pelvic ultrasounds, computed tomography scans, 18F fluorodeoxyglucose–positron emission tomography scans, magnetic resonance imaging, and/or tumor markers (carcinoembryonic antigen, CA 15-3, and CA 27.29) is not recommended for routine follow-up in an otherwise asymptomatic patient with no specific findings on clinical examination. – See more here.

I have been on high surveillance for almost 3 years.  It’s meant PET scans and doctor visits every three months, brain scans every six months, and a whole pile of anxiety and false positives that I’ve discussed previously.  However, last week I got great news:  no more high surveillance.  My doctor will still see me every six months and the threshold for having a scan will be very low (e.g. a PET scan if anything at all comes up, or a brain scan if I start having headaches or going loopy(ier)), and I am still on my honor to contact her with anything out of the ordinary. But this is huge to me.  I don’t even know how to feel.  I feel lighter, like something is missing. It’s like how you feel after getting a short haircut when you have long hair, or breaking out of a full body cast. My breathing feels easier.  All psychological, I know, but wow. It’s a great feeling.

So that puts me pretty firmly in remission.  In August, my doctor notified me that I had hit the 2 year remission mark.  She was positively giddy, and had also shared the news with Dr. P, the head of the oncology department whom we’d gone to for a second opinion when the cancer came back the last time.  It seems that for triple negative breast cancer, this milestone was a Great Big Deal: I no longer have a higher risk of recurrence,  just the normal, published rates apply to me now. Three years ago, I asked my oncologist what my prognosis was and her reply was “I’m worried.”  The same question last week got me “I think that it’s pretty good.”  I’ll certainly settle for that.

And that leads me to moving on.  I’m still trying to figure out what happens next.  Maybe back to work.  Maybe volunteering.  I spent several hours last week talking to three separate women with breast cancer, sharing my experience and giving them some answers or places to look up information about their own diagnosis.  I like to think that I helped them through what is a very tough time.

I’m leaving my chemo port in, though.  I’m superstitious about that as the last time I had it removed, I was diagnosed with the new cancer about a week later.  I’m also a bit superstitious about getting through the next month, since last time I had the  goodbye talk with my oncologist I was back in a month with a recurrence. And my good friends neuropathy and fatigue continue as long term side effects of the hurricane of chemo (as my doctor described it), but I can unlink what I’m left with from the cancer that caused it.

So no news here will be good news.  And I want to thank everyone who’s followed this blog, who sent me support and good wishes and prayers.  I firmly believe that my recovery has been on the wings of all of you. Thank you all.


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Side Effects

One of the permanent side effects from chemo that I’ve been left with is neuropathy.  The Taxol in my first round of chemo started it, and before I had a chance to recover, the Carboplatin in my second round firmly nailed it into place.

I’ve been left with numbness in my fingertips and with feet that are pretty much completely numb from my toes to about 2/3rd of the way back to my heel. It almost feels like my feet have been dipped in glue: I can feel the pressure and some of the movement, but when I put my foot into my shoe, I can’t tell if my toes are straight or if they are squished. I still drop things with my hands, and often when I’m knitting I can’t tell if I’m actually holding the yarn or not.  It’s a bummer, all in all.

But beyond the numbness is the associated nerve pain.  I’ve been treating that with medication for a while, but it’s just not doing the trick.  So instead of adding in a second, complementary drug, I’m trying acupuncture.  I had my first appointment this week.

AcupuntureAlbuquerqueWhatIsAcupunctureI went into a clean, comfortable treatment room, and was told that I’d be face up on the table.  We went over my issues, and the practitioner began placing the needles, which were each pulled from sealed packets.  I had several in my head (like a tiara!), a few in my ears, then in the webbing between my fingers and toes, other sites on my feet and arms, and a few around my knees for good measure.  My practitioner then turned out the lights and told me to rest for 25 minutes.  I was pretty comfortable, and I think that there was something going on as my feet started to get itchy all over, which is at least a sign of some activity.  At the end of the time, she came back in and removed all of the needles.  She told me that they often hook up electro-stimulation machines to the needles, but because of my implanted device (the port) that wasn’t an option.

It wasn’t unpleasant at all, and I’m going to go back in a week for my next session.  I’ve also been advised to begin soaking my hands and feet in epsom salts, which is easy enough to do.  I am hopeful that this works, not just for pain management but also for nerve healing.  I am completely open to complementary medicine, and it’s interesting that my huge HMO has begun to support it as well.  Keep your fingers crossed!

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A View from the Other Side

A few months ago, a very close friend was diagnosed with breast cancer. As she’s a single woman with no partner, and because she is in the same health system as I am, I offered to be whatever help I could be, including going with her to some appointments and explaining a lot of how the treatment process is going to work.  I was able to tell her that at her first clinic appointment, she would be meeting three doctors and that she was going to be offered a treatment plan and would likely be making some decisions that day.

I am more than happy to help.  I know firsthand just how important it is to have  someone by your side, and being a resource for her to ask questions of has, I think, made things easier for her.  In some ways it’s weird for me, though.  I’m sitting in the same waiting rooms as I did before, but I have to make sure that it’s all about her.  We are good enough friends that I’m able to say to her that she is in full control:  I’m happy to do the things with her that she wants me to, and I understand perfectly if she wants to do parts of it without me.  Oh, and that she can tell me back the hell off at any point and I won’t be upset in any way.  It seems to be working well so far.

But then I sat for hours in the surgical waiting room with her mother while she had her initial surgery.  I went from sitting with her in pre-op discussing books, to sitting in the waiting room anxiously awaiting news, through to discussions with the surgeon, pushing the recovery nurse to give her more anti-nausea drugs, and getting her into the car for her ride home.  And as much as it sucks going through the surgery, I now know just how much it also sucks to be the one waiting.

Supporting someone through an illness is difficult. I understand better now the fine line between being supportive and being overbearing, how much fear and concern the people in your life have that they hide from you, and how it can be a struggle to be supportive without being pushy and controlling. I’m grateful to my family and other support folks who did a great job of achieving the right balance for me.

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Scan Time Again

I saw my oncologist last week to go over my scan results and the first words out of her mouth were “Are the false positives we keep getting stressing you out too much?”

Yes, this quarter’s PET scan showed something that turned out to be nothing at all.  While there were no signs of the breast cancer in any of the usual suspicious places (lungs, liver, or bones) the results came back with an area of my colon lighting up like a supernova. Since I have a strong family history of colon cancer, this meant an immediate referral for a colonoscopy – hardly my favorite thing to do.  I had to stop the blood thinners I still take for the chemo induced DVT, start up shots in my stomach twice a day, and do the prep.  For those of you who have never had a colonoscopy, this is actually the worst part.  You start a clear liquid diet for a day, then have to get a full gallon of slightly salty (and in my case, slightly lemon flavored) liquid down your throat.  It’s hard to drink all of that fluid in the two sittings 8 hours apart, but I managed to keep it down.  They gave me lots of meds during the procedure so I remember very little of it.  They did find a small polyp, but they rushed the pathology for me and it came back completely benign.  If I ever heard what caused things to light up, it must have been when I was high as a kite medicated during the procedure.

So out of the four PET scans I’ve had since finishing treatment, half of them have shown worrisome things that turned out to be nothing.  My doctor still considers me to be high risk for recurrence, but she’s suggested that I move to scanning every 4 months instead of every 3, which sounds good to me.

The whole thing has brought up the issue of scans in general.  The usual procedure amongst local treatment centers is not to do scans after treatment has ended. Dr. Susan Love, one of the leading breast cancer experts in the US, addresses the issue here, but the essence of her argument is

 If a woman learns her cancer has spread through these tests, it only means she will be living longer with the knowledge that she has metastatic disease, not that she will live longer than she would have if she were not diagnosed until symptoms developed.

While this sounds counter intuitive, in a strange way it’s making sense to me.  I don’t think that I can explain it, but I guess that I am reconciled to cancer’s devious ways and that in some cases, ignorance can be bliss.

While I believe that it’s true that routine scans are unnecessary, it leaves the average cancer patient with anxiety.  Every little ache and pain, every twinge in your surgical area, any little weirdnesses: they all drive the thought that the cancer has come back.  With my scan schedule, I am able to put those fears to rest, but it’s been at the price of too many days of anxiety about what looks real on a scan but which, in my case, have turned out to be non-starters.

One of my online friends put it best:  It’s hard to move on without the scans, and it’s hard to move on with the scans.

PS My doctor said that Metformin, which is a diabetes drug that is being looked at for preventing the recurrence of cancer, can be the cause of a colon lighting up like mine did. I’m not on that drug, but if you are that might be useful to know.

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