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Photo by Jason DeVarennes

Tuesday, January 19, 2016

Time Flies

Light at the end of the tunnel - or is it another oncoming train? 

I started writing this post in October... Time got away from me!
 
John and I got up early on September 8, and walked the four miles down the Charles River Path from our house in Watertown to Mt Auburn Hospital. I knew I wouldn't be able to get much in the way of exercise in the coming days, so I wanted to squeeze in this one last walk.

Upon arrival, I checked into the surgical clinic where I had my killer boobs replaced with some tiny silicone ones. For those just tuning in, on March 24, I was diagnosed with HER2+ breast cancer. Because HER2+ is such an aggressive breast cancer, I underwent 6 rounds of chemo and other targeted therapies (every three weeks) before surgery. I will continue receiving Herceptin, the miracle drug for treating HER2+ breast cancer, until March 3.



We had scheduled a bilateral mastectomy and reconstruction for about 6 weeks after the last chemo treatment to give me some time to recover from the chemo and to take a mini-vacation. After surgery, I stayed in the hospital just one night and went home to Watertown the next day. It may come as a surprise to some that I actually took a taxi home! I was just that tired. Hospitals are simply not a good place to get any rest!

Over the next two days, I spent a lot of time lounging around, dozing and reading or playing mindless games on the computer. Normally lack of proper activity would be torture for me, but I was quite happy to rest. I did manage to get out for a couple of short walks around the block, but I just didn't have the energy or desire for anything more. In retrospect, I think I'd been looking to September 8th as the finish line. In my head, I knew that I'd still have a month of recovery after the surgery, but in my heart, I must have believed that once the cancer was out of my body, it would be all rainbows and unicorns!

The reality was that I just felt blah.

And itchy.

I'd been having problems with itchiness for about a month prior to the surgery. I had tried various OTC and prescription creams and medications, but nothing was working and after the surgery it was even worse. The oncologist said that it was rare to have a side effect like this come on after chemo stopped, so she didn't think it was chemo related. But I was still crawling out of my skin, especially at night. She ordered some blood tests to rule out an allergic reaction. She then sent me to my primary care physician, who thought it was likely a neuropathic itching. Armed with yet another prescription, I headed to the pharmacy. 

John's sister, Daphne, had arranged to fly over from Ireland shortly after my surgery. Daphne possesses the very useful skill, like most Europeans, of being able to operate a car with a manual transmission! Despite being old enough to race with the masters, John has never bothered getting a driving license. Fresh off the plane, Daphne's first order of business was to drive us all out to our place in Greenfield.

Aside from all the chauffeuring, we did plan some fun touristy activities, mostly involving hiking up mountains in search of nice views.

For our first adventure, the three of us took a walk from our house to nearby Poet's Seat Tower where we then managed to find miles and miles of trails that we previously didn't even know existed. Unfortunately, as we tried to find our way back along the miles and miles of new trails, we could hear the rumble of not too distant thunder. Luckily, we made it back into town and into our favorite pizza restaurant just before the heavens opened!

The following day we all headed down to the Sugarloaf where we found miles and miles of new trails and again found ourselves on a slightly longer hike than planned. Over the next few days, Daphne must have come to the conclusion that either I can't read a trail map or that I am just a glutton for punishment. I also managed to get us hopelessly lost trying to hike up Mt. Toby, never actually finding the trail to the summit. Finally, though, I redeemed myself after conferring frequently with Daphne, the map and the GPS, as we successfully found our way around the trails at High Ledges.

Then it was back to Watertown for a few doctors' appointments. I had been doing all these hikes with drains still in place from the surgery. The first order of business was to see the plastic surgeon and get them removed. Daphne and I proceeded to celebrate my new found freedom by walking over to George Howell's for coffee and then strolling back along the river. It was ferociously hot, and the shade along the river was welcome.

On Thursday we sent Daphne off to Boston to do some real touristy things. I walked down the path to Mt Auburn Hospital for my every-three-week infusion of Herceptin. When asked how I was feeling, I said I was tired but I had walked there. The nurse then told me she wasn't surprised that I was tired as my hematocrit was at 23%, which is pretty darn low. The oncologist said for anyone else with those numbers, she'd give a blood transfusion, but since I was so fit and had actually walked there, she'd hold off and see how I was next time. She did suggest I add more iron to my diet.

Armed with the hematocrit results, I took the bus home.

The next day I had my followup with the cancer surgeon.

She read from the Pathology report: No Residual Invasive Carcinoma is identified!! Davros had been exterminated!

Let the celebrations begin!

But then she chastised me for walking too much! I had a bit of fluid buildup that the plastic surgeon would need to drain. She blamed the walking and told me I had to take it easy.

I really didn't think my hikes were excessive. Prior to surgery I had been riding 60 miles a day.  Walking 5 or 6 miles seemed pretty tame to me. The only problem was that lifting my left foot had started to feel a bit awkward.  I initially thought this was just from the uneven footing on trails, but I had started to notice things didn't feel quite right walking around town on the smooth sidewalks and paths. 

In fact I had stumbled walking home from dinner the evening before. I blamed this on a hard chair and figured since I'd lost so much weight and no longer had any padding on my bum that the sciatic nerve had gotten pinched a bit. 

Good thing that my next appointment was for a massage - that should help. However as I tried to walk there, I found myself having even more trouble dragging my left foot. And rather than helping, after the massage it seemed worse. I phoned the oncologist, who decided to order an MRI of my spine. 

My next appointment was with the plastic surgeon who drained the small amount of fluid and told me it was due to what I was wearing or more to the point - not wearing. I needed more compression around the surgical site. She said I could walk as much as I felt like. Sadly it was becoming apparent that walking was presenting problems of another type.

My phone rang just as we were leaving. The earliest MRI appointment I could get was over a week away and the oncologist didn't want me to wait that long. She said to go to the ER, since they could get me in for an MRI that night. 

I really was OK with waiting a week rather than spending hours the ER, but the doctor didn't want me to wait that long. Sadly the ER is all about waiting! First I spent hours in the ER waiting room. Then I finally got to see a doctor, who determined that I couldn't raise my big toe and all along the shin and the top of my foot was numb. He said they would get me in the queue for an MRI. The MRI machine is booked 24 hours a day, with a few slots left open for the ER. There were two people in the ER already waiting for an MRI, so it would be a while. But he wanted the MRI to rule out cancer in my back as the cause of the foot drop.

Whoa! What? 

I thought we were just looking for a pinched nerve in my back. The surgeon had just told me that morning that there was no cancer! 

What?

Then I was left alone with my computer and the whole freaking world wide web, which is a darn scary place to be when you google cancer

An agonizing 12 hours later I finally got the MRI and then the report that there was nothing in the spine causing the foot drop and no signs of cancer in the back.

A few days later, the oncologist told me my initial impression was right. She had sent me for the MRI to rule out nerve compression in the back. She never had any concern about more cancer. 

The next few months were spent trying to figure out what caused the foot drop and to fix it, as well as getting the itching under control. If you've ever watched the TV show, House, you may have thought it was purely for dramatic purposes that the team would hypothesize what might be wrong and propose a treatment based on that. When that didn't work, they'd come up with a new theory and treatment. Then at the end of the hour, after almost killing the patient, House would show his brilliance and solve the case.

Well there was no near-death experience, but there was a lot of "let's try this."

One test showed there was damage to a nerve just below my knee - possibly due to anti-clot booties worn during surgery. A few months of physical therapy later and I can finally lift my big toe again and walk normally. Big sigh of relief!

The itching got worse before it got better. While the oncologist still doesn't think it's related to Herceptin, other women I've encountered in online support groups have reported similar issues when on Herceptin. Right now I'm taking way more drugs than I'd like to keep the itching at bay, but for now I seem to have found the right combination. I'm really hoping once I am no longer getting Herceptin that the itching goes away and I can stop taking all these pills that leave me so groggy.

The hematocrit numbers did not improve with OTC iron, but did get better after a series of IV iron infusions. I asked about EPO, but as we all know EPO has all sorts of risks for blood clots and such, and really I just needed to get my iron level up.

Anyway with all this going on, I somehow left this blog entry half written. 

And then I started to feel better and I was too busy riding my bike to finish the blog post. 

Yes, I have been riding the bike. I was off the bike for a month after surgery, but once I was given the green light, I wasted no time trying to rebuild some strength. I've got a long way to go still, but I've got some big plans for this year. I hope to produce lots of content for the blog. I'll even try to make some time to write about those rides.

For 12 hours one awful evening back in September, the light at the end of the tunnel appeared to be yet another oncoming train. Thankfully it wasn't. Superstition will keep me from saying anything more than that. And in fact, superstition demands that I now say this: "Bad Harvest! Bad Harvest! Bad Harvest!"***


*** If you're a Downton Abbey fan in the U.S., do not look up this reference because you might find a spoiler!


8 comments:

  1. Hi Pamela

    Great to hear you're making progress! I knew this from Facebook but nicer to get the longer view/perspective.

    Interesting about the foot drop episode. I work with a corrective exercise specialist (with support from a sports masseur), with one recurring problem being a tight (as in locked solid) anterior tibialis muscle following spraining my ankle in November 2014 and then stupidly respraining it just 5 weeks later.

    Turns out, problems with that muscle is the most common cause of foot drop, see e.g. http://www.triggerpointtherapist.com/blog/tibialis-anterior-pain/tibialis-anterior-trigger-point-foot-drop/

    Trigger point therapy helps me a lot in dealing with tension and pain, while I work on gaining strength and re-aligning my body.

    Rebecca

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    1. Thanks for the info/link. I think what I had was different. No actual pain to accompany the weakness, numbness along the shin and top of foot down to big toe. The nerve test showed definitive damage just below/outside the knee. The good news is time healed it. I have equal strength in both feet now and have done several long walks and hikes recently with no noticeable foot drop. One of the docs blamed leg crossing, but I've done this my whole life and do not favor one leg over the other. Still I am extremely conscious now of when I cross my legs and try to avoid it.

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  2. Yikes - you've been through way too much! Glad to hear that the delayed update meant you were too busy having fun after all the scary stuff passed. Looking forward to following along on some adventures this year!

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    1. It is amazing how as things get delayed, it gets harder to catch up. Working on the Festive 500 post now and once that's done, I'll get to the August vacation ;-) Winter should be good for this, except, it's been relatively pleasant so far.

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  3. Thank you for sharing Pamela, great to hear your progress. I must say I was concerned when posting stopped. (Not that it is any of my business, but concerned.) my wife and I ride a tandem and you have been an inspiration to us starting with your cold weather dress series back in 2012. Know you've been missed. Paul and Rachel

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    1. Thanks for the kind words. I had hoped that the instagram and strava updates (visible on the web version of the blog) would at least let folks know I was still around. I hope to be a bit more regular with postings now.

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  4. Hey Pamela you are one of my big biking heroes and I just wanted to say Hooray it is so great to hear you're on a solid path to recovery and good health! We'll be sending prayers your way!

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    1. Thanks so much for the thoughtful note.

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