Month: October 2017

Cold Caps — the details

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While I have highlighted that I was going to try this new-old-fangled technique to attempt to save my hair, I didn’t really provide details about how the process works or why in the hell it might be effective.

Not that I followed cancer innovations super carefully pre-diagnosis, but I really hadn’t heard of this technique. To me, and probably most of you, and to everyone who has seen a cancer movie or real life with someone who has had to go through chemo, hair loss is not only a side effect but in many cases, a sure thing. My own oncologist told me essentially “yup, everyone who has AC chemo loses heir hair at about day 14-17.”

It was actually my doctor who flagged cold capping as a solution. He has had a handful of patients do it in the last 18 months, all with good effect. I’m am the 5th patient he has had, and he had another right now who is going through it, but his previous four patients were 4/4 in keeping their hair. There are a few companies who sell the caps and there are a couple of ways they can be used — one gives you caps you chill in a cooler filled with dry ice and the other uses a machine that kind of looks like the hair dryers in a salon — except it is blowing cold air, not hot, onto the head. I have the former, which means that every other Tuesday, Mark is going to an ice company and picking up 70 pounds of dry ice so that I have enough for the next day.

Dry ice exists in its frozen state at a temperature of -109.3 degrees Fahrenheit. Did you know that? I didn’t. Point is, it’s a lot colder than regular ice, which is critical because the caps I put on my head need to be -28 degrees Fahrenheit for the treatment to be effective. We have four caps, all chilled in the cooler and all eventually put onto my head to keep it cold. The caps need to be changed every 25 minutes for several hours, with the first one going on an hour before chemo starts, and the last one coming off 5 hours after chemo has ended. The idea is that the scalp gets so cold that the hair follicles go into a sleep-like state and don’t absorb the toxins in the chemo. If the hair follicles don’t absorb the toxins, they don’t die. If they don’t die, the hair doesn’t want to fall out.

People have asked if it hurts, and it does, the way cold ice cream hurts when you eat it or your bare hands hurt when you touch snow. I take a couple of Tylenol and a muscle relaxer as part of my chemo regimen and the pain goes away after about ten minutes and then I am numb for the day. My sister said my scalp is actually frosty when she changes the caps. So weird.

Chemo is pretty mellow and quiet — I’m just essentially sitting there with an IV in my arm, but the capping process ensures that things stay pretty busy throughout the day around me. I am eternally grateful for my sisters and close friends who have signed on to help me — if I do keep my hair, it will completely alter this experience and really be an enormous gift to me and my children.

It is now day 27.

I still have ALL my hair.

For more information about the caps, or to tell a friend who might be interested in using them, go here.

Two Down

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You guys, I am okay! Everyone has been checking in and so I wanted to thank you and let you know that I am, in fact, doing well after my second round of chemo. I have some side effects and feel a little tired but honestly, compared to what is outlined in the side-effect list, I have had made it out okay.

Before the chemo started, the patient (moi) got a chance to sit down with the super busy MGH Medical Oncologist for thirty minutes to outline the side effects I noticed during Round 1. He summarily countered each and every thing with either a suggestion for how to pre-empt and hopefully prevent said effect, or a recommendation for a diet change or medication to resolve the side effect immediately. Amazing! He also assured me that the Pu-Pu platter of side effects served to me during Round 1 will likely be my “set” of things to deal with, so there shouldn’t be too many surprises. I am extremely comforted by this and feel prepared to handle these side effects, and get really good doing so.

I also made progress with the stupid Neulasta shot that had to be administered 24 hours after the chemo by taking Tylenol and Claritin (not sure why, but it helps with the side-effect list from THIS drug) early in the day before the scheduled injection. Also, insultingly, the needle must be injected somewhere I can “pinch an inch” so I actually iced my tummy fat for a few minutes before actually getting the shot. And I didn’t cry! Winning!

Chemo itself will likely be a set of (surprisingly good) memories I’ll never forget. I have a set of pals and family members who never fail to entertain and often humiliate me with the hospital staff. When I approach the chemo desk with these people and my giant-ass cold cap cooler and ask for a private room, the staff takes one look at us and gets us the damn private room. This past time I told them, while wearing my cap already, that I was checking in for a perm. They responded that they only do extensions and weaves. Ah, perhaps later.

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We put my first cap on before entering the infusion center. I’m like a walking advertisement!

Each one of my sessions will be a motley crew of my folks, some cold capping snarky remarks, and smelly food that will surely continue to put off the nursing staff. Who turns up the treatment room temp to 80 and then proceeds to order a tuna sandwich and some Anna’s Tacqueria to go? Team Amanda does!!!

With two treatments under my belt, my focus is beginning to shift from recovery/coping to going back to work. My company and team have been amazing during my absence and I’m ready to get back into it in the next couple of weeks. Thanks to short-term disability and vacation time, my paycheck hasn’t taken too much of a hit, but it will soon. Plus, I truly would like to think about something else other than this idiotic cancer detour for once. I’ll continue chemo, taking time off for and after each treatment, and then Ill get back to work when I can. As if things weren’t busy before… the name of this blog, may I remind you, is “I DIDN’T HAVE TIME FOR THIS”, remember?

I’ve started to catalogue some ideas about how to survive…

Lake Crappyshores

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Lake Crappyshores

The bus dropped me off here a couple of weeks ago and told me they’d pick me up in a few months. During my first chemo appointment I waded in and stopped. I was told at today’s appointment that I need to get in and swim. I have no choice. I’m only up to my ankles so far and it doesn’t seem too bad but from what I can see of this red, toxic lake, and from what I have heard, swimming will make me tired and sick, run-down, with dry and itchy skin and eyes. It’ll make my hair, eyebrows and eyelashes fall out and I’ll get mouth and lip sores. And my toenails might even turn black.

I can’t recall a time in my life where I have stood at the edge of an experience with the knowledge that it’ll hurt me and make me sick, with very little I can do to help it. Childbirth brought with it the promise of a new, healthy baby. Surgery had the promise of ridding me of cancer and post-operative medication.

But this seems different, and more overwhelming. My fear of the unknown, mixed with an unrelenting frustration that this is EVEN happening with a dose of anger tossed in for good measure makes this nearly unbearable. For those of you reading my entries up until this point who have wondered how I have this optimistic, happy outlook on life in the face of this diagnosis, fear not: I do not have a heart of stone. I was a blubbering, sobbing, snorting, wheezing blob of anxiety yesterday. It wasn’t pretty. But it was necessary, and it made me feel better, actually. Especially when paired with one of my husband’s big, strong, hugs.

So, I showed up. Dry ice in cooler, cold caps and two goofball friends in tow, to ensure my hair follicles are icy and sleepy and I get lots of laughs. And then, with my cold cap on, I dove in.

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The kids are alright

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The kids are alright

It’s been about eight weeks since we told our kids the unexpected news. Thinking back on that evening, they each seemed a little bit excited, as though we were about to tell them we won a trip to Disney World or were getting a new puppy or (shit!) Mom’s going to have another baby! Considering these were likely the top candidates for reasons we would sit them down in the living room with stern faces and no TV on, they took the news that their seemingly-invincible mom had breast cancer remarkably well. Note: Disney and/or puppy may be coming later as a consolation prize. Mom will not be having another baby, however.

People have always told me that children process as much information as they are capable of handling. Our discussion ended up being a really remarkable observation in developmental childhood psychology and a real lesson for Mark and me, as these special little creatures’ parents. From that night, we’ve taken our cues from them and have sworn to ourselves that we’d remain true to the advice given to us before that first discussion. And it’s worked, so far. (I keep saying so far because when you tell the planet how well your kids are doing in the face of this bullshit scenario you might suspect the Gods will go and mess it up. So here’s hoping, again.)

Since my pre-op appointment with the plastic surgeon, John has periodically checked in on the boobs. “How are your boobs?”, “Can I see your boobs?”, “Can your boobs get wet?”, that kind of thing. General concern and feigned curiosity, and not much more. He’s much more interested in whether he will get a blind bag in the morning for not peeing in the bed or if he can have just. one. more. snack. He is full of cuddles and love, though, and has been very understanding (and gentle (!)) if I can’t do something fast enough or pick him up or need a nap. I’ve been proud of him and appreciate his what-you-see-is-what-you-get attitude with this whole cancer thing.

Our middley one is our enthusiastic spectator that has provided companionship, general support and entertainment, and comfort, with the pure, easy confidence that comes oozing out of only a fourth grade girl. She’s been a JOY and a CHEER to be around and has even found the ability to laugh at herself when she starts to cop a ‘tude and I groan, “but come on….. I can’t…..” pathetically enough. She heard us when we told her that we have the best team in the world, with the best treatment, at the best hospital, and she believed us. When I got my drains out after surgery, she ran into the room when I got home and gave me a huge grin, high five and a fist pump and said “Mom! No drains! Nice!”. She has celebrated my wins with me and has cuddled in bed with me when I am feeling low. I am so grateful.

Our oldest gal understandably has had the hardest time with everything. Part smarts, part media (not just social, but breast cancer is EVERYWHERE), part chatter with friends, she knows this isn’t always as black and white as it appears. Add to my diagnosis two already life-altering circumstances: 1) She was moved to another soccer team and OH MY GOD ALL HER FRIENDS WERE ON THE OTHER ONE AND WHAT IS SHE GOING TO DO and 2) she started the sixth grade. Sixth grade is exciting, don’t get me wrong! But she went from her cocoon of elementary school to a totally new (awesome) school with kids from all over town and she has a HOMEROOM and she SWITCHES CLASSES and TAKES THE BUS and all of these new terrifying things and THEN SHE FOUND OUT NONE OF HER FRIENDS WERE IN HER CLUSTER.

The night before my surgery, as she processed all of these things, she joined me in my bed and sobbed to me, “First, you get breast cancer, then I get moved off my soccer team and now I won’t know anyone in my whole cluster”. I paused, hugged her, and then I burst into tears. I knew how she felt — sometimes enough is just ENOUGH, already. This totally freaked her out and she exclaimed, “Oh wait, I didn’t mean to make YOU cry!” to which I snorted back, “I WANT to cry. Middle school is scary. Missing your friends is hard. And I have breast cancer. Breast cancer sucks. Surgery sucks!” I hugged her and we cried a little more. And then, once we had wiped away the snot and tears, we made a deal: we would regroup one week from that night and do a pulse check on how things were going. I had to explain to her what a pulse check was and realized I was deploying my employee management tactics on my 11-year-old, but whatever. Desperate times call for desperate measures.

We forgot to have the pulse check. She reminded me the following Thursday night before bed and shrugged and said, “Eh, we can do it in the morning.” Which we did, over cereal and coffee. Mom feeling after surgery: 4.3/5 stars. New soccer team: 5/5 stars. Middle school: 4.5/5 stars.

And counting.

 

One down

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One down

The absurdity of this situation continues to catch me off guard on a daily basis. Just when I think I’ve shifted my mindset to okay, let’s just get this over with and do this thing, I get stopped in my tracks by the littlest non-events. Like a shot. I just had a double mastectomy for chrissakes! I can do anything! Right? No.

The smaller moments are like insulting punctuations, and they have become the ones that sting the most somehow.

Last week was chemo morning round 1, and the actual administration of it was really a non-event. The exhaustive listing of side-effects, blood work-prepping, hospital-bedding, paperwork-making parts of it it took the cake, and the buildup was dreadful. In the end though, my morning was basically an IV and then some stuff pushed into it including some stuff to make me sleepy and relaxed.

The drugs were put into the iv with a bag for the (C) and with a syringe for the (A). The A is red and so can make my pee red. Awesome again!

I was sleepy and relaxed though so the whole ordeal was less painful (emotionally and physically) than I expected. I think my sister and Mark had the harder job which was the cold caps, which were cooled to -28C and then put on my head every 20-25 minutes. For about 7 hours.

That sucks. For everyone involved but if we keep it up for the whole regimen, I may be able to keep most of my hair. Everyone loses some hair, but the effects should be much less noticeable. Fingers crossed, okay??

The after effects- I feel high and tired, mostly. I had to have my friend administer a shot of Neulasta the day after (it was this moment I chosen to use to burst into tears) to help with my white-blood cell count, and unfortunately the main side effect from that is that it causes bone pain. I feel like I had the flu shot all over my arms, it seems hard to lift them. But I have (surprisingly?) no nausea, thanks to the medication cocktail I was provided, instead I did feel flu-ish at first.

With a new day, plus one or two now, I feel good. Everyone around me (and us) continues to be so thoughtful and kind and I already haven’t done enough to say thank you. So please know we are thinking and saying it.

7 to go.