Showing posts with label Toby. Show all posts
Showing posts with label Toby. Show all posts

Thursday, February 8, 2018

How Are You? Just Fine, Thanks!

How are you?
There is so much to this question for me-- obviously now, but I have actually always struggled with this greeting.
I don't really know why. I think I have always been a self-reflector (one who self-reflects?), so the question, to me, reads deeper than it should.
I want to tell you of all the assorted ways that I feel, of how I am truly doing. I have learned to embrace this awkwardness about me, but it took a long time to successfully supply the rote and expected response of, "Great, thanks! How are you?"
I do not attribute any sort of callousness to this greeting, though I think there are better ones out there, ones that won't cause people like me (over-thinkers?) to pause, mentally review their life story in its current iteration, and then blather on about how I take the dog, Toby, for walks daily unless it is too cold or possibly rainy, which it has indeed been, and then a barrage of medical updates, also I like when I see this white deer on my walks, oh and I am definitely terrified of catching the flu this season, and I have been watching the show "Riverdale" and it is actually not that bad!, I have had some contract work so that's super cool, oh and also I am rereading A Wrinkle in Time before it hits the theaters... etc. So you get the point, yeah? More odd is that I am not otherwise an over-sharer.
So that was a really long way to get to an update about how I am doing. I am fine, thanks! How are you?

I have two chemo infusions left, scheduled for February 16th and March 7th. This new chemo (adriamycin & cytoxan) is a great deal suckier for me than the previous stuff (taxol & carboplatin). I may not have shared with you already that there is a nickname for adriamycin... the Red Devil. Named so for its color (yep, it really is red) and for the toll it takes on patients. Also because it must be administered very carefully so as not to damage skin or veins-- my nurse actually sits and pushes the red devil in via giant syringe. YEAH. It takes about five minutes total which makes me think of the phrase, "A moment on the lips, a lifetime on the hips," but reimagined as, "A moment in the port, a week on the couch." And a lifetime of no more cancer, right?
Thankfully there are meds to counteract the nausea, which is helpful-- but really what it means for me is major food aversion. Everything sounds disgusting for at least a week. Some advice I received from someone in the Young Survivors Coalition (this is an org for people who have had a breast cancer diagnosis while they were young) was that when the brain and the stomach agree on a food, you eat it. This has resulted in some interesting dinners, such as tater tots (just tater tots, nothing else), just fruit or fruit snacks, just a sweet potato. I have even had some meat, just because it did not repulse me. So we will get through this next month and reconfigure the food situation once more.
For my next infusion, I have called in reinforcements: my mom is coming to visit again!

One more update that I am even less happy to report is that I had to spend a couple nights in the hospital last week for neutropenic fever. LE SIGH. Please do not worry, because it was not something serious. But it could have been, so they keep you for a few days, no matter what. Like cancer jail.
A neutropenic fever means low neutrophils plus a fever. Very low neuts, as they were at .2. My fever was low grade (100.6 at its highest), but they tell you to come in if it is above 100.4. I first called the on-call oncologist, who said to take a Tylenol (you are not supposed to do this unless explicitly told-- they do not want you to mask a fever), go to sleep, and if it spikes again in the night, to come in. It did and we did, at 3:00am (NATCH, because who goes to the ER at a normal hour?). Long story short, they transported me to the hospital, gave me strong antibiotics, and observed the hell out of me. After many a test, they could not find the source of my fever, and really it could just have been my own regular bacteria causing it since my immune system was compromised. My fever went down and stayed down right away, and once my neuts got back up to a safer level (1.4), they let me go. I disliked this entire experience, but was super grateful for John staying the night each night, and for the amazing medical personnel at every step of the way.
Side note: Who are these people with these insane jobs? They work ridiculously long hours and see some horrifying sh&* and I just do not understand it. My EMT works 24 hour shifts! And still volunteers as a volunteer firefighter/EMT on the side! Just... no. But thank you, thank you, thank you, to those who do this work.

Tomorrow I have my first appointment with my plastic surgeon.

Cool story, Hansel.


I asked for a sweet potato, and I got a sweet potato. Thanks, John!


I can relate.


Wednesday, January 17, 2018

Happy New Year & Other Musings

Happy New Year!
I have not been one for keeping you up to date, I know. Holidays and general laziness. Also, despite being from the North, I just really do not enjoy being cold and thus end up bundled up under blankets with a book and a cat as often as possible. As such, I am quite happy that the next five whole days will be noticeably warmer, and Toby the dog will love me once again as we resume our walks in the woods. Also, if I have not told you yet, or you do not follow me on Instagram, there are gorgeous deer in the nearby woods. I love them. One of them is piebald, which means mostly-white but not albino (not the technical definition, but you can look it up). Very rare! and I consider a positive sign for me. Also, we have come to call her my patronus. Which in my head sounds like the song "My Sharona." Are you with me? lulz

Public Service Announcements
It seems that the flu is really terrible and an epidemic this year so please stay home if you are sick. THANKS
Also if you did not get a flu shot, please do so.
THANKS

What's New
I did finish my first phase of chemo-- all 12 TC or Taxol/Carboplatins are complete. That was a lot of chemo, my friends. Yuck.
I also began Phase 2, which is known as AC or Adriamycin/Cytoxan (sounds delicious!). I will have just 4 total of these infusions, every 3 weeks, so cross your fingers that March 2 is the end of chemo for me. Prior to starting the AC, which I did the week after finishing TC, with no breaks, I had to have another Echocardiogram and ECG. Adriamycin is apparently not always great for heart health so they monitor it pretty closely. Additionally, since I only go every 3 weeks, each time is a potential Pembro infusion. John is convinced that I am getting it, and I am not sure, except for a slight rash on my cheeks (attractive, yeah?) I have gotten the last two times of potential Pembro. All I know is that saline solution does not give me a rash. Chemo is definitely testing my beauty limits, and I praise the Sephora goddesses (monetarily).

Chemo Buddy Features! 
In December, my chemo buddies were: Christine (who I unfortunately never did get to see, due to my low neutrophil count-- and I so appreciate her taking the time off work for me! I was sad to not have chemo that day-- because what is worse than chemo? Not having chemo... and not getting to hang out with your chemo buddy), Megan (featured here), Jessie, Barb, and John.
Jessie also brought me a gorgeous quilt that she MADE HERSELF. As I get older, I realize that more and more of my friends have creative talents, and it shocks me every time. How amazing! How did you even make time for that?!
I have known Jessie since 2004, when we met in Vegas on a post-election sad sack trip with a bunch of Dean friends (although she worked for Edwards... blame Courtney 😉).

Jessie is the best. 

My MIL, Barb, who is amazing, was in town for Christmas, and got to be my final chemo buddy! (John will be chemo buddy for the remaining infusions.) Barb is wonderful, and I am very lucky to have married into this family. 

Best MIL ever. 💗

The loml, at my first AC infusion. 

Gratitude
I also want to thank all of you for every single one of your well-wishes: your cards, care packages, tea, gift cards, a free week of food delivery service!, blankets, books, text/social media messages, phone calls, chemo buddies!, in-person visits (Becky! Kate! Matt!), FaceTime chats, flowers, and the *many* other incredible and thoughtful gifts and your different ways of being there for me during this suboptimal period. You get me through the tough parts, which mostly are just feeling as though this will never end... chemo is drudgery, and it can be discouraging on the vanity front... and I can do anything for another month and a half-- so wish me well with tomorrow's labs (let's go neuts!). 

Saturday, October 14, 2017

Camp Chemo Update #3: Third Time is Not Necessarily a Charm

Yesterday was my third chemo infusion. It was a little unfriendly to me, as I had a brief reaction to the Taxol, and we had to stop it for a few minutes before doing a slow ramp back up. My face had suddenly gotten very hot, and Chemo Buddy Lisa said it looked bright red. My chest felt like something was sitting on it, and I felt a little panicky. Nurse S. quickly came over to stop the infusion and sit with me as it subsided. Eh. Life of chemo.

I also had them add a flu shot for me. This, plus not getting enough to eat before going to chemo, was not the smartest of choices, I fully admit (I had a cereal bar and some trail mix... 😳  ).
Yes, I know better than that, and no, I will not do it again. After chemo, Lisa and I got some lunch at District Dumpling, which is delicious, but I made another mistake by getting the fried version. Your food matters, let me tell you. Lisa then drove me home, and as the night wore on I felt increasingly uncomfortable and dehydrated. My stomach ached, my hips(?) ached, to the point of not being able to concentrate on the show I was watching (Orphan Black, now that I have finished The Americans Season 5). Finally I gave in and got physically ill, which finally turned the whole unpleasant ordeal around after about two hours of the unpleasantness. I took some anti-nausea meds, drank some water, and crashed before 8:00 pm.

So apparently cancer is not all bikes and hikes, dear reader. That's okay.

In fact, I had been having semi-crazy thoughts such as, "This is going so well. Is it even working?!" A former colleague of mine who has been through it before said, "You are allowed to look and feel great. Just keep kicking ass!" And that really helped, you know? I had not thought I was actually feeling guilty about feeling so good, but there's a trace of that, sure. So now that I had a moment, does that mean I'm a "real" cancer patient? (Rhetorical questions, no need to respond.)

Today is much, much better. Aches and nausea are totally gone. I will take Toby the dog for a walk and check my energy for a run or something later. John and my BIL, D., are biking the first day of the MS150 in Pennsylvania today. I woke up early (that happens when you are asleep by 8:00pm) so I got to see them head out, and John made me a bowl of oatmeal ("Perfect consistency," he said as he proudly showed me the oats on a spoon... he has high oat cooking standards. It shouldn't surprise you, if you know him). Sorry that I do not have a pic of that. I do, however, have a lovely photo of Chemo Buddy Lisa and me from yesterday's infusion (where she lovingly and mercilessly laughed at me as the Benadryl set in).

Chemo Buddy Feature: Lisa! 
Lisa and I met while working at the NEA, so that means we have nine years of friendship under our belt. When I told Lisa that I have cancer, she immediately said, "WE are going to get through this." Meaning she will be right there with me. Which is an incredible thing to hear.
The next time I saw her, about a week or so later for dinner, she came armed with a giant gift bag filled to the brim with a comfy and stylish tunic (Lisa is known for her chic style), socks, an entire Sephora store's worth of hydrating facial masks, and a great book called Pretty Sick: The Beauty Guide for Women with Cancer by Caitlin M. Kiernan. I love beauty products (I am a proud Sephora Rouge member) and this book was very informative about what to consider purchasing and she offers up several suggestions at different price points, and also has a lot of great advice from some of her famous friends who have had cancer. (TL;DR The name of the game is to moisturize). If you know someone else who has cancer, this could be a great gift, and you can order it here.

Lisa is an incredible woman and I am lucky to count her as one of my BFFs.


Lisa and I brought our pixie-cut chic fabulousness yesterday. 




Here's the book!





Friday, September 29, 2017

So, How Was Camp Chemo?

Dear friends & family,
My first day of Camp Chemo was pretty breezy, and while I can't say that I would have chosen this camp of my own free will, the people are pretty nice, and they give you a fairly comfortable chair to use during your stay. There is a kitchenette, a TV that was unfortunately turned on during the last hour (now I can watch my stories), and wifi. Plus the added benefit of starting treatment that will get rid of this cancer.
Thank you for all of your thoughtful texts, Snapchats, FB messages, etc. It definitely helped brighten this big day by knowing you are supporting me. 😍

My morning began very smoothly, always a plus:

  • Good night's sleep ✅
  • Wake up on first alarm ✅
  • Shower/get ready ✅
  • Light breakfast (my standard warm water with lemon, smoothie, matcha tea) ✅
  • Remembered to apply lidocaine cream to Power Port location ✅
  • Only slightly overpacked my backpack with comfort items, laptop, books, and magazines ✅
  • Arrive on time, with five minutes to spare ✅

Since it was my first day, I was informed that it would take a little longer, so they could assess whether or not I have allergies to one of the drugs called Taxol (I do not). I met the two nurses (Sofia and Jennifer), met with Researcher S., met with the Physicians's Assistant (PA) J., and another woman whose name I cannot remember but brought me a tablet with some surveys that I needed to complete for participation in the clinical trial.
I also had some additional blood drawn for mystery reasons (also part of the clinical trial, and is just a fact of life. The nurses don't know what it is for, either), my vitals checked, and completed a biopsychosocial assessment (just a Likert scale of how I am doing in terms of well-being, quality of life, anxiety, depression, pain, etc.). I feel mostly great, in case you are wondering.

Researcher S. stopped by to ask if I had brought my anti-nausea medications, and to say that I should not try to push through feelings of nausea or pain. She added, "Not that I think that you are one of those people," which shows that she does not know me at all, or is a great psychological device for getting "those people" to agree that they will not try to push through and will in fact take those medications when the need arises.

I got to use my Power Port for the first time! We began with a saline solution, then 30 minutes of the Pembro (immunotherapy drug) OR placebo saline solution LET US ALL TAKE A MOMENT TO HOPE/PRAY/SEND GOOD VIBES THAT IT IS THE PEMBRO THANK YOU, some "pre-meds" that included Benadryl and steroids in preparation for the Taxol, which was administered in a ramping-up fashion taking a little over an hour that we will not need to do in future appointments given that I am not allergic, and capping it off with Carbo for 30 minutes and one final saline solution flush.

This is a double-blind study, so I will never know whether or not I am one of the lucky recipients. It is a 2:1 chance that I will, though, so I have some okay odds.

Three or four hours later, I am feeling mostly normal. I had a snooze with Jax, one of the kitties I live with, on my stomach (Benadryl is the culprit for fatigue here), I took the dog (Toby) for a walk in this most gorgeous fall weather, and now it is time for dinner. I am told that it may be tougher on day three or four, so we will cross that bridge when we get there.

Here is a picture of Jax and me taken a few weeks ago. He loves to snuggle. Ignore my bedhead.

What's Up (Some Tough News)

Over the past couple of weeks, I have slowly been sharing my tough news with individual family members and friends. It can be exhausting, s...