Weeping and Healing

Happy snowy day all. I hope that most of you got to leave your jobs a little early and are now snugly cozied up in your homes with a mug of hot chocolate and your puppies. Everyone should have puppies. Here are mine. 

As for me, the snow doesn't make one iota of difference. I didn't drive today. I wasn't at work today. I haven't, in fact, been at work for over three weeks. I've just been sitting at home coating myself in a variety of ointments and swapping between three different lounge outfits, because everything I wear gets stained from the oil in the ointment. Actually, that's not entirely true. I mean the three outfits part is accurate, but the staying home part is somewhat misleading. It's not that I don't go ANYWHERE. Just yesterday I went out to two different doctor's offices. I have another appointment on Thursday, another on Friday, and one on Monday. It's my hobby. 

Last week, I had my 6 month check-up with the oncology surgeon who took out the tumor. (Not the 2010 tumor, mind you. I'm referring to the 2022 tumor. I've had cancer twice. My chromosomes are stupid). Anyway, at the surgeon's office, I learned that things are looking as good as can be expected for a person at this stage of treatment. I also learned that I have to go to physical therapy to deal with the muscle tightening and scar tissue created by the radiation. This is never going to end. 

Speaking of radiation, how are the burns, you might wonder? I don't care for them. To quote Homer Simpson "they're the suckiest bunch of sucks that ever sucked." I mean, my radiation team is really nice, but boy are they a ever a dirty bunch of hoodwinkers. No one told me that it would be this bad. If they had, I may have just gotten to be better friends with the tumor and invited it to stay for a malignant freeloader vacation. 

To be fair, the burn in my armpit is much better. Almost all of the peeling has finished and in it's place is healthier, although still discolored, skin. The rest of me, though, is another matter. From the bottom of my ribs up to my collar bone is all affected. Some areas are bright red, some are splotchy, some are blistered, some are peeling. It's like a morose Dr. Seuss book. 1 Burn, 2 Burn, Red Burn, Weeping Burn. 

Oh, did I not mention the weeping? SO MUCH WEEPING. It's really quite gross. I thought that being constantly coated in petroleum was disgusting, but this is decidedly worse. It's a form of radiation dermatitis called moist desquamation and if that doesn't title make you want to hurl, the description will: "a consequence of radiation exposure in which the skin thins and then begins to weep because of a loss of integrity of the epithelial barrier. It is a painful result of destruction and sloughing of dermal layers." 

True. I can verify that my epithelial barrier is destroyed. There is almost no integrity to be found anywhere. It's embarrassing, really. Also, each blister is apparently filled with a yellowish goo that dries in crystalline form on my skin. So, along with the slimy part of the weeping, there are cancer crumbs all over me. It's like those parts of my chest have been replaced with unevenly coated, very fine sandpaper made for ruining shirts and self esteem.  

In good news, though, I got a new prescription for the blistering areas at one of my appointments yesterday. It's meant to help dry out the area and prevent bacterial growth, because ... eew. If I started harboring a new bacteria colony on top of everything else, I might really lose it. The new cream seems to be helping and I have hopes that I may actually feel well enough to attend work sometime before 2023. Keep your fingers crossed. 

And if you want to see new photos of how the burns are developing, they are below. If you are grossed out by such things, don't look. No one would blame you. I don't even want to look and it's my own skin. 

Chest burns and beautiful mesh tube tops to hold dressings in place.

Healing armpit.

Gross blisters.

Clavicle burn.

Idiot squirrel eating my birdseed this weekend. 

That last one was just for fun. Except for the birds. They find the squirrel to be disruptive and unseemly. Kind of like cancer. 

Okay, back to your cocoa. I'm going back to the couch and my puppies. 

I DID IT!

8 sessions of chemo and 30 radiation treatments all finished! 

And then there was cake. Obviously.

My suspicion is that for most of you, this sounds like phenomenal news. Treatment is done. Cancer is smushed. Yay Liz. 

Unfortunately, (well, fortunately for you) most of you do not have direct experience with radiation. My situation is markedly less cheery than the completion of daily trips to the oncology office would suggest. As I was warned, the side effects of killing cancer cells with a linear accelerator have been getting progressively worse each day. If my body responds like most, my tissues will continue to become more and more inflamed, blistered, and tender over the next week or two. 

This is suboptimal for me, as my daily routine already involves a lot of ointment applications, bandage changes, and sitting around with my left arm raised to avoid friction in my armpit. I'm not sure how much more I can adapt. A medically induced coma sounds like a suitable next step. 

To illustrate, I will show you some photos. If you're the type to be grossed out by things like rashes and extreme sunburns, please stop reading. Luckily for you, it's not as yucky as other things I have posted on this forum. I don't have any photos of surgery scars, draining bodily fluids, or necrotic tissue. You'll have to scurry back to the 2010 blog posts to see those. 

I'll ease you in.

This is my body. The periwinkle oval near the bottom of the screen is where the tumor was. The green outline is the area of radiation treatment. You'll notice that it goes all the way from my collar bone down past the tumor site and from the middle of my torso around to my back. It's a big area for a 5mm already excised tumor, but they have to target all suspicious cells and lymph nodes and whatnot.

You can also see the tube from my port (Viper) snaking (see what I did there?) down into my heart. That Viper is a real interloper.

This is me in the prepping area.

There is lotion in all of the radiation rooms, because the treatment makes skin become dry and peel. One nurse told me "make sure you are putting lotion on 4-5 times a day. You can't over-hydrate. It's your new job now."

This me on the day that I went into the changing room and realized that I got undressed without bringing in a hospital gown. Oops. 

This is me waiting for radiation. I'm a bat. 

This is me in the radiation room. The black thing on my stomach monitors my breathing, as the radiation is dosed to hit my body only when I'm holding in a shallow breath. If I release the air, cough, sneeze, or wiggle, the machine shuts off. The thing on my chest is the bolus, which I have previously referred to as a giant jello jiggler. You' see that it is covered with a thin fabric and is lined up with the green beams for precision each day. 

This photo shows the radiated half of me versus the healthy half.

Internally, I have some muscle tightening and scar tissue forming, which I can feel (but they assure me is not new tumors). Externally, there are basically two areas showing the strongest side effect, my chest and under my arm. Both areas are getting worse by the day. This photo is my chest on November 9. There are a few small, but infuriatingly itchy lesions.  

The same area a day later

And four days after that

Here you can see that a patch of burn (technically called radiation dermatitis) is developing under my arm. This photo was taken on November 11. The early days of the burn made me so uncomfortable that I walked around like Mary Catherine Gallagher all day, in an effort to prevent my arm from repeatedly adhering to and then peeling off the tender skin. It was a cute look, I like to think.

Two days later it had grown larger and developed some blisters and peeling.

Three days after that, it was much bigger, and more layers of skin began sloughing.

So, this is me now. I'm in a lot of pain and there are very few ways to alleviate it. As luck would have it, however, the radiation technicians tell me that it looks "pretty good. It hasn't even split open yet." So there's that.

Time for more cake, I deem.

November 10

It's Thursday morning of Week 5, which means that I have 2 more radiation sessions in the regular schedule and then 5 after that in the boost week. What is a boost week, you ask? Super question. It's a terrifically exciting award that I have earned. The prize is extra energy rays aimed at my already damaged body. Yay! Although I would rather have had a trophy ... or a cake. I think oncology offices should hand out more cake. 

Yesterday, at radiation, the technician asked me what I had planned to celebrate the completion of my treatment. I couldn't think of anything. She suggested that I at least engage in some pampering, get a massage or something while I'm considering what else to do to mark the wonderful cessation of  horrendous events. Yes, perhaps. The thing is though, just like at the end of chemo, it isn't really the end. The side effects of radiation will continue to develop for two more weeks after I'm done. What kind of jubilation does that incite? 

In truth, I will be really pleased to stop going to the oncology office every day. It's hard to feel happy or at all normal with a daily reminder that I've been playing the role of cancer assassin since April Fool's Day. That's seven months. It's long enough for me to have seen the landscaping at the Maplewood Cancer Center go from spring bulbs to summer blooms to mums and pumpkins to spruce tips and birch sticks. That's a lot of flora turnover. Logically, I know that there will be some point in the future at which this will all feel like that year that was, a bygone era of incessant crappiness, but right now I'm still feeling square in the middle of it. 

Finally giving in to something I probably should have done months ago, I've taken a leave from work. Partially, it's the result of lingering chemo brain, fatigue, and my radiation schedule. Also, it's in response to the fact that I am really uncomfortable. My muscles feel like I've done entirely too many one-armed push-ups, when in reality I've done zero push-ups of any sort.* My skin is various shades of pink from the bottom of my ribs up to my clavicle and from my sternum around to my back. I have a very itchy rash on my chest and another in my arm pit that causes pain each time I move my arm. 

But, not all is lost. I have some very good news and that is that my hair, eyebrows, and eyelashes have started to come back. It will certainly be a long time before I have flowing locks, but it's definitely cause for celebration. And maybe cake. 

*Footnote: I once did 52 push-ups in a minute, earning me a prize at my Tae Kwon Do class. That was a long time ago, though. It was before I had muscles moved from my back to my front and before I learned that my body was working against me at a chromosomal level. Also, I used both my arms. I think the correct number of one-armed push-ups is probably none. 

Radiation Week 1

I started radiation this week and I didn't love it. 
As a matter of fact, it caused a lot of anxiety --- which came with a lot of nausea. 

Which is maybe why I am seeing words like "barf" in word-finds,
even when they aren't in the list. 

On Monday, I cried during treatment.

On Tuesday, I hyperventilated.

On Wednesday, they started me on sedative.

On Thursday and Friday, things went a little better. 

Tomorrow, we start again. 

That's my poem.

Preparing for Baymax

Tomorrow I will start radiation. I don't want to go. From everything I have heard, radiation is generally tolerated much better than chemotherapy, but still. I'm disinterested. 

On Friday, I went in for the practice round, which they call a "simulation" to pretend that it isn't terrifying. Or maybe that is the point? To simulate the terror that you will feel once the actual treatment starts? Well, it worked. I was properly terror-stricken. 

I won't go so far as to say I had a panic attack, but I was panicked. I wanted to sit up and say "hey, all you strangers. How about we just stop for a bit and talk about this and/or does anyone have a spare bit of Ativan they'd like to share with me?" But I didn't, because:

1. I would have hit my head on one of the robot arms of the linear accelerator machine.

2. My movement would have caused the sharpie marks they had drawn all over me to become mis-aligned with the grid of scary, green lines emitted therefrom. (To clarify, I mean that the green lines were being emitted from the robot arms, not from the no-fun dot to dot on my chest. If my body could shine green lines out of it, I suspect that we might be past the point at which radiation could help.)

3. My hospital gown would have fallen down to my waist and I felt like baring one breast and a doughy abdomen was enough exhibition for everyone already. It certainly was enough for me and I wasn't even looking. 

4. It takes at least 40 minutes for Ativan to kick in so I don't know what I was thinking, anyway.

Instead, I just stayed on the table and tried (mostly successfully) not to cry. It's not their fault, though. Everyone was very nice to me, it's just that the chasm created by my fear was too difficult to cross. 

In an attempt to put me at ease, all of the therapy nurses introduced themselves and (probably by accident) had very kind faces. They gave me a warm blanket and asked me what kind of music I'd like to hear. The answer was "I don't care," because why would I want to permanently associate any of my favorite songs with radiation? 

The ceiling had those pleasing landscape images covering the lights, which was enjoyable except for the fact that there was a dead tree in the middle of one of the pictures and I couldn't stop staring at it. I don't suppose it was purposefully representing morbidity, but you never know.

The most considerate thing that they did, though, was to model the machine after Baymax from the movie Big Hero 6.

Do you think that was intentional? Probably not. Maybe, though? I'll ask tomorrow. 

Baymax notwithstanding, the whole procedure was not my favorite. Based on the mapping appointment, I was prepared for the hospital gown and the lying with my arms above my head part and the disembodied voice giving me instructions from another room bit. I didn't know about the zillions of measurements that they would take while standing over my inert self, though. I didn't know about the bolus (sticky, gel pad) that it would take three nurses to place on me like a cold, gluey, crappy Jello jiggler. I also didn't know that they would come at me from two different directions to trim the bolus with scissors working alarmingly near my skin. 

And I certainly didn't know that I would have such a strong mental reaction. And the fact that I didn't predict it is why I drove myself to the appointment and had planned to go back to work afterwards. I did not account for the fact that it may become difficult to breathe and that I would want to vomit all over the side of Highway 36. Luckily for me, I have a whole medicine cabinet full of anti-nausea medications. So, I was well-equipped. 

Anyway, that's all I have to say about that. I haven't had a super-great weekend and tomorrow starts 5-6 more weeks of treatment. I'm having a sad time. 

Frustration and Radiation

I’ll tell you what sucks: running out of energy to do the things that are normal part of my day.

Every single day I get up and I get dressed and ready so that I look as much as I can like a normal Liz. And every single day I hit a wall and I have to go home and take a rest.

Sometimes it’s at noon and sometimes it’s at four but it happens every day. I thought that I would be feeling better by now. I thought the peripheral neuropathy would be better. It isn’t better. It’s actually spreading. I don’t even call it peripheral neuropathy anymore because it isn’t only in my extremities. I feel it in my arms and sometimes on my legs and I even can feel it on my side. So it’s just neuropathy in general.

Chemo ended on the 15th and yet I often need to excuse myself from work, leaving in the middle of a project or a meeting. Every single day I need to tell my team that I’m sorry, but I don’t have the energy to continue whatever it is that we’re working on or whatever project they were expecting I was going to finish. It feels horrible. I don’t want to have to say I’m tired. I don’t want to have to say I ran out of energy. I don’t want to have to say I can’t do something. And yet I need to do that every single day.

Fatigue sucks and chemo brain sucks and I'm pretty sure radiation us going to suck.

Yesterday, I went to oncology again and met with my radiation oncologist. Afterwards, I was introduced to the team and then had the mapping done. It wasn't terrible, but I wouldn't recommend it if you're just lying around bored. There were lots of people looking at my nakedness and commenting with many numbers that were probably some sort of cancer-busting code. Oh, also, I got my tattoos! They're the very first tattoos I have and I don't like any of them. Such a shame.

Congratulations to Me!

I have successfully completed all eight rounds of chemotherapy!

No more ice mittens!

No more guilting Scott into going to get coffee and donuts. 

No, actually I'll probably still do that for a while.

No more port?
Sadly, I've been advised to keep stupid Viper in there at least for the next two months.
During radiation, there will be lots of blood draws and there may be the need for I.V. fluids.
So, it just makes the best sense to keep the port for now. Boo, hiss.

But focusing on the silver lining, much celebration was had last week. My family and I went out to a fantastic dinner on Thursday to commemorate the end of chemo. Jesse, we missed you. I hope that Denver's dining hall treated you well.

On Friday, I showed up to work to find my very own parking space, marked "Former Chemo Patients Parking Only."

The way into the building was decorated with signs reading "Liz Fights Cancer Like a Boss." My whole team was inside the doors clapping for me as I entered. 

My office door even was treated to an upgrade!

Once inside, there were more surprises: gorgeous flowers, a princess torte, and a cookie bouquet.

Even as I write this, four days later, I can't stop smiling.
I am certainly surrounded by love. 

Thank you to everyone who has been part of this dumb, dumb journey. Some days, sadness engulfs me and then I receive an amusing GIF or an offensive greeting card and my spirits are lifted. I appreciate all of you more than I have the mental capacity to say. 

I know that I'm woefully behind on thank you notes. I'll get to them soon; I promise. For now, I'm spending all my daily energy on necessary human tasks and waging a cellular war. Oh, I'm also reading A LOT. Please send book recommendations. 

So what's next?

1. Recover from chemo. I spent the weekend on the couch with fatigue, bone pain, and a fever. The first part of this week I'll be be working from home, taking naps when needed. 

2. Return to work and get a bunch of stuff done, because:

3. Radiation mapping starts on Monday.

Xoxo, Liz