CultureJunkie

Phase I Complete!

Today I received my last chemotherapy infusion. It was sort of anticlimactic - no spontaneous singing (like Cracker Barrel on your birthday), or confetti falling from the ceiling. But it was a big milestone in my treatment: Phase I is now complete.

It was a long 4 months and while I'll miss seeing the smiling faces of my care team, I am soooo happy to have that phase behind me. And I chatted with a fellow patient today who provided a sobering reminder of how lucky I am to see the light at the end of the tunnel. He is battling multiple myeloma, a terminal case of cancer of the bone marrow. I've been spending 7 or 8 hours at the hospital per treatment knowing that it would end on this day, whereas this poor man spends 12 hours per visit in the latest clinical trial, hoping to get some short term relief.

I still have some occasional bone pain, random ankle swelling, night sweats, cording, and a fair amount of fatigue, but for the most part I feel much stronger than I did at the beginning. I can't say the same for my hair, brows, and lashes - they have finally given up the fight. Here's what they looked like back in February:

...and here's what they look like now:

But the good news is that I should start seeing some new growth on my head in about a month. Word is, it'll be peach fuzz, possibly light or gray because chemo kills the pigment, and maybe even curly. But it'll revert back to my straight, brown locks at some point.

And in the meantime I've poured my cosmetic energy into my nails and did this fun sponge application which I first spotted on Pinterest:

So next up is Phase II: surgery. I go for my breast MRI next Wednesday, followed by a surgical consult on Friday, and surgery on June 13th. I'm currently reading Prepare for Surgery, Heal Faster, as recommended by the social worker at MGH, in hopes that some of the mind-body techniques it teaches will help me get through it without stress.

But for now we'll just celebrate the fact that I made it through chemo!

 

 

 

 

 

 

 

 

 

 

 

Chemo #1 (February 2012) and Chemo #8 (June 2012)

 

Lucky No. 7

This was a very good week! Most of the pain I was experiencing was gone, I started exercising again, and I completed my 7th round of Chemo. So just one more to go.

I started doing some very basic yoga (I've been an active practitioner for years, but have been away from the studio for 4+ months now), but it's been limited by a new side effect: Cording. This can happen after lymph node removal (which I had) and occurs when lymph fluid builds up under the arm and crystallizes around muscles/tendons, creating a thick, hard cord that runs from the armpit down the inside of the arm (attractive, right?). It's sore, feels like a very tight tendon, and has limited my range of motion in that arm. But it is reversible through "aggressive massage" and exercises designed to break down the crystallization, and I will hopefully see the physical therapist about it next week.

I've also been walking - two to three miles every day for the past week - and while I won't set any pace records it has really improved my stamina and all but eliminated the pain in my legs. Plus, I'm getting to enjoy the fresh air and sunshine, and all these Spring flowers in Charlestown:

 

 

 

Happy Mother's Day

Happy Mother's Day to my Mom, who has been my biggest champion (and caregiver) throughout this ordeal. And she's a breast cancer survivor herself!

Round 6

I have now completed 6 of 8 chemotherapy treatments; the end is finally in sight!

The Taxol is proving to be much easier to tolerate than the previous A/C treatments were. I had a rocky start with it last week when it caused terrible neuropathy in my fingers and toes (painful, discolored nails with numbness/tingling in the pads of the fingers) along with joint pain in my ankles, knees, and lower back. But I got a prescription for Neurontin which has all but eliminated those problems (just some lingering soreness in the nails and the ever-present fatigue), and last Saturday night was the first time since this all started that I actually slept through the night.

Which meant that I was feeling good last Sunday when we celebrated my Mom's 79th birthday (via a surprise party at a friend's house) and my Dad's 83rd birthday today.

I also ditched Kristen Wiig for most of this week and wore an assortment of beautiful head scarves in memory of an amazing woman who lost her battle with ovarian cancer one year ago. I was in awe of her grace, humor, and strength then, even when I couldn't personally relate to what she was going through, and I remember it as even more amazing now that I have first hand experience with chemo and all that it entails.

But as I said, the end (hopefully) of my fight is in sight, and I have surgery (lumpectomy & lymph node removal) tentatively scheduled for mid June. Not looking forward to that (I have to be awake for the initial biopsy part!!) but hopefully by July the toughest part will be behind me.

 

 

 

Round 5

 

Yesterday I completed Round 5 of chemotherapy. It went well, but it was a really long day at MGH, starting with bloodwork at 9:30, meeting with the nurse practitioner to review my lab work at 10 (white blood count was good this time, but red blood count was low, leading to anemia which explains the severe exhaustion and under eye circles I had all last week!). But I got the go-ahead for chemo anyway, and that started at 11. It took about 5 and a half hours all in because with this new drug - Taxol - you have to start with some pre-infusions including saline to prep the veins, Decadron which is used to treat cancer, and Benadryl to prevent a reaction that some people have to the Taxol (red face, itchy throat, and severe lower back pain...thankfully, I didn't experience this). I did fall asleep within about 10 minutes of the Benadryl hitting my bloodstream, however, so I was out of it for the 3-hour Taxol infusion that followed. Aside from being a bit groggy when we left, it was much easier than previous treatments, without the sick hangover feeling.

With just 3 more infusions over the next 7 weeks, the end of chemo is now in sight. But I have to say, the anxiety about my treatment outcomes is growing now as well. It's easy in the beginning to sort of coast along, joining the ranks of the nearly 300K cases of breast cancer in the US this year, follow doctor's orders, and assume you'll "beat" it. It's a difficult diagnosis to swallow of course, but when you're getting treatment at one of the best facilities in the world, with tons of experience and well-established protocols, it's easy to imagine this will just but one tough year out of your life and then things will go back to normal. Until you're in the thick of it.

I'm now 3 months into this journey, and this is what I've learned so far:

• No two cases of breast cancer are alike. Women get it for different reasons, detect it at different times, get varying treatment protocols, and respond differently to them. While there's no shortage of fellow patients and survivors to talk to in person and online, and while it can be comforting to know you're not alone in this, it can be challenging - and even misleading - as well, because their experiences won't necessarily predict your own.
• Information is a double-edged sword. Some stories and data can give you hope, while others just cause unneeded stress. Earlier this week I looked up breast cancer survival rates because someone had asked and I didn't know the answer. I assumed they were high, again because it seems like so many people get this and beat it, and I was shocked at what I found: for Stage IIIB cancer, which is what I have (yes, my original Stage II diagnosis was changed after subsequent testing found a fair amount in my lymph nodes), the 5-year survival rate is only 41%. This is why I don't like to read up on the topic, people! But in all seriosness, it's important to note that the 5-year survival rate (the percenage of people who live at least 5 years beyond diagnosis) is based on people who were treated at least 5 years ago. Improvements in treatment since then can mean more favorable outcomes now, and many people live much longer than 5 years out. More importantly, these numbers don't take into account that some of the deaths are from causes other than breast cancer. That said, survival rates cannot really predict what will happen in any one person's case. It reminds me of an article someone shared early on that discusses all the numbers and choices that cancer patients need to face (and offers up a good reminder: "The 'median survival' number is not fate. It is simply a middle point. Let’s say a doctor tells you that the median survival for your type of cancer is one year. That means half of the patients lived less than 1 year. But half lived longer. Shoot to be part of the latter group."
• You really just have to take things one day at a time. I'm a planner and researcher by nature, but I've found that for my own sanity I've had to cede control on this one, trust that my treatment will work, and just tackle things one day at a time. There are no exact, prescriptive cures for this - it's a lot of trial and error, often with strange side effects and reactions that no one could predict and sometimes can't solve. So you just have to do your best and hope that it all works out in the end.

But for now I'm just looking forward to some nausea free weeks...it's nice to have my appetite back!