Liz's Cancer Blog

Weeping and Healing

2022-11-29T21:05:00.000-06:00

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!

2022-11-19T16:59:00.000-06:00

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

2022-11-10T09:51:00.005-06:00

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

2022-10-16T20:13:00.000-05:00

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

2022-10-09T16:06:00.000-05:00

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

2022-09-27T16:05:00.000-05:00

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!

2022-09-19T19:18:00.001-05:00

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

Cancer Truths and Myths

2022-09-11T14:42:00.000-05:00

TRUTH - Cancer sucks and everyone hates it.
Yes.

MYTH - If a cancer patient looks good, they feel good.
Um, no. I put on makeup, a nice outfit, a matching head covering or a cute wig every day and then I smile at people and get things done. That in no way means I feel good. It means that I'm trying not to wallow and give in to the depression that is fighting to claim me.

TRUTH - Chemo can make your eyelashes and eyebrows fall out.
Yup. I avoided this particular sadness for quite some time, but it has reached the point at which putting mascara on does more aesthetic harm than good. I have so few eyelashes that the mascara slips through the gaps and rubs a black smear all over my eyelids. Then I take a q-tip to try to remove it, which just makes my remaining eyelashes stick together into two big, deformed lashes. I quit mascara.

MYTH - Fatigue is the same thing as being tired.
Incorrect. Being tired is what happens when you are short of sleep. Your body needs a little recharge. Being tired can be easily solved by napping or sleeping. Having fatigue is when your body has less energy than normal. You can use that energy reading in bed and occasionally getting up to make a sandwich or by getting dressed, going to work, and attending a few meetings. Either way, the person with fatigue (me) will run out of energy and need to rest. The big difference is that when a person with chemo fatigue wakes up from a nap, they still feel tired and they still have pain and they still feel bummed out that they have cancer. They aren't recharged; they just have a little more energy to try to make it to bed time.
MORAL - Do not ask someone suffering from fatigue if they "feel better" or "feel refreshed" after a nap. They don't.

TRUTH - Paclitaxel (rounds 5-8 drug) causes peripheral neuropathy.
Oh, hell yes it does and it's f-ing horrible. I don't have neuropathy all day long, but when it occurs it interrupts my daily activities and also my ability to feel like there is any happiness left in the world (Harry Potter reference). The pain starts with hundreds of needles poking at my hands or feet, kind of like if your foot was asleep and then blood started flowing regularly to your little piggies. It's bothersome. If I ignore the pain, it goes away in a while. If I continue doing things that exacerbate it then it worsens. Luckily, the types of activities that increase the pain are really unusual and in-frequently encountered. For example: putting lotion on my face, wiping my hands on a towel, holding my steering wheel, feeling something with a lot of texture like a t-shirt or a soft bedsheet, clapping, wearing socks, walking. So, I just avoid doing those things lest the neuropathy move on to the next phase, which is a million mosquitoes biting me at the same time. I can't slap at them, though, or scratch the affected epithelial area or I will move on to the third phase, which is a trillion mosquitoes along with tracker jackers for added pain and the addition of trauma-induced insanity (Hunger Games reference).

MYTH - Wearing ice mittens and ice socks may help prevent peripheral neuropathy.
I have no evidence that there is any validity to this statement. I dutifully and painfully don my ice gear at the beginning of the three-hour infusion, only taking them to swap them for the even colder back-up set we keep in the freezer or if I sense the early signs of frostbite. I still have, as was previously detailed, peripheral neuropathy. So, myth busted. Now that I think about it, though, I did speak with someone whose neuropathy makes his feet numb, making walking difficult and causing several falls. So, maybe my subzero outfit is preventing that?

MYRUTH - The first four treatments are easier than the second four.
This is what they tell you in the oncology office, but it isn't quite black and white so I made it a myruth. It's true that the drugs used in the first half of treatment have worse side effects than the drugs for last four. I have had very little nausea and less-frequent fevers, but the cumulative effects of treatment are no joke. During rounds 1-4, I had:

Chemo
A week of terrible
A couple days of feeling sick, but mostly like myself
A few days of feeling totally healthy
Chemo

During rounds 5-8 it's more like:

Chemo
A week of being wiped out
A week of being slightly less wiped out
Chemo

I never get back to being me or feeling like I'm not sick. Sad face.

(Side note, I accidentally wrote side defects up there instead of side effects. I corrected it, but I feel like I'm probably onto something and it should maybe be absorbed into the medical lexicon. Chemo drugs are designed to kill cancer cells. Anything else they do is a defect. Stupid, defective cyclophosphamide. Try harder.)

Great News

2022-08-24T21:25:00.002-05:00

I have some phenomenal news. I get to go to Denver to take Jesse to school!

During my visit with oncology last week, my doctor and I agreed that the cost of missing out on that rite of passage was just too high.

Her decision might have had to do with the fact that she is also a mother ... or maybe it was the tears. I'm pretty close to tears all the time now, so that part is kind of hard to avoid.

With some precautions and added protections, she feels like me going is a reasonable risk.

On Friday I went back to the oncologist and received a COVID antibody medication called EVUSHELD, which is a pre-exposure prophylaxis. So, I'm super-immune now - not COVID-proof, but definitely more COVID resistant than before. Think of me like a Timex watch. If you splash COVID all over me, I could probably repel it. But if you submerge me in a vat of COVID, my protections would probably fail.

If you want more precise evusheld edification, I'll tell you that it "is an investigational medicine used in adults and adolescents who have moderate to severe immune compromise due to a medical condition or have received immunosuppressive medicines or treatments and may not mount an adequate immune response to COVID-19 vaccination," Administration involves two injections of tixagevimab and cilgavimab. They're really catchy names I think.

Supposedly, my super-powers last for six months after which time I will be eligible for two more really substantial injections into my buttocks. Hopefully, by then I will be back to health and ready to battle the pandemic like the rest of you.

I'm also going in tomorrow for some extra bloodwork to determine if I should have some blood cell producing booster. As I wrote that, I realized that I have no idea what that is. What I've been told is that if my counts are dangerously low, there will be some action taken. I'm not sure if that is some sort of injection, infusion, prescription, or blood transfusion. We shall see.

Anyway, all of this means that I'm not going to be left behind when Jesse moves, which is the best news I've had in a long time. Colorado, here we come!

It's Been a While

2022-08-17T21:12:00.000-05:00

You may have noticed that I haven't blogged in a long time. It hasn't been for lack of thought. I consider writing all the time. Sometimes I even compose paragraphs in my head ... but then I remember that I'm tired of everything. So, then I don't write anything.

Unfortunately, people seem to like my writing and keep mentioning that there hasn't been much of it to read, lately. I know they only say that to be nice and to show their interest in my well being, but it feels like pressure. I don't want to write. I'm sad. Things are heavy.

There is so much to say and yet saying anything seems so hard.

However, I also promised that I would put updates here so that everyone didn't have to incessantly ask me how I'm doing. So, I guess I ought at least do that.

Tomorrow is chemo session number 6.
This will be the second round of Paclitaxel, which is a different poison than the first four treatments.
Paclitaxel does not cause as much nausea as the Doxorubicin+Cyclophosphamide.
It also doesn't cause red tears (sorry, Charlotte).
Paclitaxel does still cause decreased white blood cells, platelets, and red blood cells, keeping me at risk for infection, bruising, bleeding, and anemia.
It also causes peripheral neuropathy, which presents as numbness, tingling, or a burning sensation in the hands, feet, and mouth.
The preventative measure to combat peripheral neuropathy is to ice the areas that are likely to be impacted.
I have special ice mittens and ice socks which I have to keep rotating into the freezer to keep my hands and feet cold for the full treatment, which lasts three hours.
I hate it.
The neuropathy is cumulative, which means this weekend will be worse than two weeks ago but not as bad as two weeks from now.
My last chemo appointment will be September 15.
A little over a week later, on September 26, I have my appointment for radiation mapping.
During that appointment, I will get a couple of tattoos and hang out in a CT machine for a while.
A week or two later, I'll start the radiation treatments. They will be five days a week for five weeks.
The anticipated immediate side effects of radiation include rash, blisters, swelling, darkening of the skin, fatigue, and tissue changes.
I don't want it.
To add insult to injury, my darling Jesse (née Laila) leaves for college in less than three weeks and I don't get to go. I will have just gone through round 7, will be feeling terrible, and should not be on an airplane. I hate this more than everything else combined.

Basically, my tolerance for this bullshit has worn thin. It's taking too long and it's taking too much. I'm unhappy most of the time, but I try to keep that inside as much as I can. I'm starting counseling with the oncology therapist on Monday.

What I've learned is that cancer is a very isolating disease. I have a lot of people around me, but everything I'm feeling (except the port and the hair loss) is invisible. The pain, the nausea, the fevers, the fatigue, the digestive issues, the neuropathy, the low blood counts are all weights that I carry alone. The only way for my network to support me through those symptoms is for me to talk about them and that just seems like one more task that I don't have the energy to do.

I'm having a rough time, friends.

Chemo Round 4 for the Pin-Feathered Canary in the Coal Mine

2022-07-21T16:06:00.002-05:00

Well, here I am again. I didn't want to come. I asked my mom to take me to see Jurassic Park instead, but she just said that she will ask to be on the planning committee to see if we can come up with other ideas for Thursdays. Although, since this one was already planned, she felt we should support the team.

Whatever.

So, I sit in the infusion chair - which is (much to my sister's dismay) not the same thing as drink ingredient, like simple sugar infused with rosemary. It's true. This infusion is garbage.

Although my appointment time was an hour ago, I'm not even close to starting the poison. There are a couple reasons. First, there are lots of steps (blood draw, nurse visit, pre-meds) that happen before the bad stuff. Second, and more concerning, my blood pressure was alarmingly low this morning, 87 over 64 to be exact. I tend to run low, but that's really not great. They're giving me I.V. fluids to see if it can go up, but otherwise I might not be able to have treatment today. This day just continues to be stupid ... and there are no dinosaurs.

Update: I've now finished a bag of fluids and I made it up to 99 over 64. I've been given the green light! So, we're off.

Since I have time on my hands, I'll provide you with some other updates, too:

My hair is almost all out, but my head is still spiky. To look at me, you would think I'm bald, but I still have a smattering of hairs that make my head stubbly. It's like the pin feathers of a bird, if you have ever tried to defeather your own bird. I haven't ... because gross ... and also grocery stores. But, my siblings did once when we got a free range turkey for Thanksgiving. I watched from the dining room window. They didn't enjoy it, as I recall. There was a blow torch involved, because Pete was there.
We've been over the genetics report in more detail now. I'm at a higher risk for more breast cancer and colorectal cancer. But, I'm a breast cancer patient right now, so future monitoring and treatment are things we will discuss when this current shitshow is over.

What we know is that one of my parents probably (unless I made it mutate myself?) passed down this Chek2 gene problem and now everyone adjacent to or south of me on the family tree needs to be tested. My siblings and children (once they are 18) must make a visit to the High Risk Oncology Clinic. That's a place everyone wants to go, so I'm pleased that I could make it happen for them.

I'm hopeful that no one else comes back positive, but either way I'm considering myself and my two cancers to be a very useful canary in the coal mine, sounding the alarm for others. I'll probably get an award later, or at least some very special seeds and berries.
We had a good consult last week with Mayo Clinic about the proton vs. photon radiation treatment options. The meeting brought lots of information but no clear decision. So, we had another consult with my local radiation oncologist yesterday. Basically, what we learned is this:

Mayo's proton versus Maplewood's photon will both be five days a week for five weeks.
Both will start with mapping, including the expertise of dosimetrists and physicists.
The photon therapy goes straight through my body, in through the chest and out my back. Therefore, there is a slight increase to my heart. (I'm at a 4.5% risk of heart attack by age 80 without treatment and it goes up to 5.4% with radiation.)
The proton therapy drops off right before the lungs, so it protects my heart more, but I will be at an increase risk for rib fractures.
Skin irritation is worse with proton therapy, which is concerning for me because of the lupus.
There is a greater chance of inflammation and issues with the implant with the proton radiation.
We have a big decision to make.

Okay. That's all. Updates are over. I'm home now and it's time to start watching Netflix.

I Lie Corrected

2022-07-12T18:59:00.004-05:00

How does it feel when your hemoglobin is low?

I can tell you.

It feels like you are the most out of shape person in the world.

It feels like standing for two minutes to brush your teeth is an unmanageable eternity.

It feels like walking up one flight of stairs is an achievement worthy of a medal, but you won't want to wear the medal, because it will be too heavy.

It feels like the ridiculous "Suggestions for Energy Conservation" by MN Oncology have actually become useful after all.

Here are some of the suggestions that made me laugh a few weeks ago. How silly I was.

Use a terry robe instead of drying off with a towel.
Use moderate temperature water instead of hot.
Use a shower bench or lawn chair to sit in while showering.
Use the grocery cart for support.
Use a power scooter if the store has one.
Don't lean forward unsupported.
Sit to transfer clothes from washer to dryer.
Hang clothes on doorknob.
Use mixes or prepackaged food.
Sit while preparing food.
Store frequently used items at chest level to avoid stretching.
Lay out clothes before dressing to avoid extra steps.
Wear loose fitting clothing to allow easier breathing.
Sit, bringing foot to knee when applying shoes and socks to avoid leaning over.
Wear button-front shirts instead of pullovers.
Place chairs strategically to allow rest stops (e.g. along a long hallway).

I hate this. But I have to go now. Scott made smashburgers to try to boost my hemoglobin!

Ask and You Shall Receive

2022-06-30T22:25:00.000-05:00

Okay, I'm unsure how this works. I don't think the Prophets, Apostles, Sages, and whoever else helped write the Bible are on the world wide web. But, maybe they are? We can't ask them. Basically, there is no way to know.

What I am sure of is that last night I posted that my head hurts and that I'm ready for my hair to fall out. Today, it started falling out. A lot. Less than 12 hours later.

To illustrate, this is my sink after I took to vigorously wiping my head with my hands. Unfortunately, or probably thankfully, those are not ants. They are hundreds, possibly thousands, of my darling hairs. Boo & yay. Sad & happy face emoji.

So, what conclusion can we draw from this rapid turn of events?

It's simple. God, Jesus, and whichever apostle recorded "ask and you shall receive"

a. know about the internet and

b. follow my blog.

I suppose the agnostics among us could claim that Day 8 of Infusion 2 is simply the day my hair called it quits. Sure. That theory certainly has its merits, science being among them.

But I'm clinging to the belief that all the Angels and Saints are up there with my dearly departed getting a heavenly kick out of my writing. It's more fun.

Also, I'd like to point out that I still have my eyebrows and eyelashes and that I really like them.

So, if there is some sort of Pearly Blog Gatekeeper, I hereby state my request that they employ their celestial powers to make my face hairs strong. Make them tenacious enough to withstand the poisoning of Viper (my cancer port). Remember him?

He's a jerk, but he too has eyelashes and should be able to understand their importance.

Sorry for the snake photo. Nick, if you don't want to be my brother anymore I understand.

Hey Mr. Tick

2022-06-29T20:19:00.001-05:00

When the kids were little, they attended a nature preschool. We sent them there because we wanted them to be curious and wild and unencumbered. We also sent them there because I don't like dirt or mud in the house and preschoolers have an impressive ability to bring the outdoors in with them. So, I let them bring it into their reading circle instead of my living room.

They also sang a lot of songs at school and we still enjoy them at home more than a decade later. One of the best was "Hey, Mr. Tick" with verses like "please don't crawl on me," "please don't stick to me," and "please don't suck my blood." The song ends with Mr. Tick getting stuck down to a sheet of paper with a piece of tape. Spoiler: he doesn't make it through craft time.

Why am I telling you this? It seems like a weird connection to a cancer blog, right? Well, it isn't. Last night, I became Mr. Tick. How would that happen, you ask? I'll tell you.

It began two weeks ago when my dear family shaved off all my hair. Remember that? Sure. It was amusing for all.

When the style party happened, I wasn't losing hair, yet. I was just preparing.

All of that has changed now. I'm shedding. It's slow, though. I was expecting more of a simultaneous migration from my scalp to the floor. Instead, I have just noticed that my hair is kind of loose in my head. I can pull it out without any difficulty or pain. I know this, because I was absentmindedly pulling at the back of my head and ended up with a bunch bald spots. I'm not proud. I'm also not delusional. Swiss cheese head is not a good look.

Plus, it hurts now. All the loose little hairs make my head sore and wearing my cute chemo caps uncomfortable. I like my chemo caps. So, what's a girl to do?

Owen had a suggestion:

"I could vacuum your head."

"With what" I asked?

"I'll use the little vacuum," replied he.

"The little vacuum that I use to clean up after the Monarch caterpillars? It's full of Monarch poop. No way!"

"I could sanitize it."

"No."

"How about packaging tape?"

Now, this is the point at which a normal mother would repeat the "no way" response. But I am not a normal mother. I'm exceptional and endlessly fun.

"Sure. Go get it. Tick-Tape my head."

Not in England

2022-06-25T21:13:00.002-05:00

I had my second chemotherapy infusion on Thursday. It went fine, much faster than the first one as they were able to see me right away and we had already gone through all of the education parts two weeks ago.

I went to work yesterday and made it the full day, plus was able to eat regularly.

Today is day three, which was the day that I really started to feel crummy last time. The pattern continues. Today I have a fever, a headache, and am very tired and weak. On the plus side, my oncologist gave me a new medication for nausea this round and it's really helping.

The biggest announcement, I guess, is that we are in Minnesota, which is not the same as London. We were scheduled to leave for our trip yesterday, but decided to cancel everything after meeting with the oncologist last week. My counts are pretty good, but I did need to consult with my care team several times during round one for symptom management and new prescriptions. That, combined with the fact that I'm immunocompromised was enough to tip the scales against travel. Boo.

Luckily, we were able to get refunds for nearly everything. Scott bought the airline tickets with miles, so those were no issue. My sob story to all the tours and VRBO lodgings was successful. Ticketmaster UK even refunded our Ed Sheeran tickets, as I couldn't download the app in the US to resell them. So, we will just push our trip off until 2023 and re-book everything for then.

I do have some news about the genetic testing, but we won't meet with the doctor to go over all the results until July 7. Until then, what we know is I have a pathogenetic mutation of the CHEK2 gene. People with this mutation have an increased chance of developing breast cancer, colorectal cancer, and possibly others such as thyroid, ovarian, or kidney. So, that's part of the problem, apparently. We will learn more later about my future treatment, observation for the development of new cancers, and what this means for my family.

I guess that's all for now. Thank you to everyone who has checked in to see how I'm doing. My family is taking good care of me. Special appreciation to Scott and the kids for being my caregivers and to my parents who brought over about a thousand home-cooked, vacuum-sealed meals for our freezer.

I feel very loved.

Style Party

2022-06-18T00:05:00.001-05:00

I've been really struggling with what to do about my hair. It's going to fall out. Some might stay in. There will certainly be thinning in parts and patches that are empty. But when will it fall out? No one can tell me. Soon, is the best I've been able to determine. Probably within the week is a likely bet. It will start with hair on my pillow or on my shoulders and then it will start to come out in clumps. I do not support clumps.

The chance that I MIGHT keep SOME of my hair is not a soothing qualifier for me.

I already have thin hair. I've been told that my situation is called Female Pattern Baldness. Dumb.

I've been using Rogaine since my 20s and I hate it. It makes my hair crunchy in the morning and it's one more thing that I have to do when I really just want to go to sleep. But, it does help me look like a normal human, which is the whole point.

Losing even 20% of what I have will basically make me look like a wet chihuahua, but with slightly less chin hair. Not NO chin hair, mind you. I'm not delusional. But certainly less.

What I wanted to do was to keep my hair as long as I could. AND I wanted to avoid the clump-scalp evacuation from commencing while I'm washing my hair one morning, getting ready for work. I've heard that this happens to a lot of women. And then you're in the terrible position of determining if you should dry your hair as normal, watching the clumps blow around the bathroom or call in late to work so that you can quickly shave your head. I wanted to be in better control than that. So, I'm bald now. We had fun and made the best of this stupid, shitty situation.

Oh, also, the next time we use our fire pit we may get complaints from neighbors. It's full of hair and it's going to be SMELLY.

Anyway, please enjoy this collection of photos documenting the process. I hope they bring some levity to your weekend.

Bad-Tempered Lethargy

2022-06-12T20:58:00.002-05:00

This is not a cheerful post. I usually try to have an amusing attitude towards my health, but I'm too tired.

I had energy and spunk on Thursday. This was me during one of my wandering adventures with the I.V. pole. Fun, right?

Now, though, I just feel blah. It's day 4 of treatment 1 and supposedly, from what we were told in preparation, days 3-7 are the worst. I must say, if this is the worst, I've really lucked out. I haven't thrown up at all. I haven't had any horrible allergic reactions to the drugs. There were no emergency trips to the hospital. I just feel like I have the flu.

Yesterday, I had an unpleasant headache, but I did talk to the triage nurse and learned which OTC pain relievers are safe for chemo use. It turns out that my migraine pills and Tylenol are both fine to use and I am currently without skull pain.

Since Friday afternoon, I've had a low-grade fever flirting with but not reaching the 100.4 number that would mean consulting the on-call staff. Anyone who has had a fever knows that it makes you tired, irritable, and generally not a lot of fun to be around, which is what I expect for myself for the next 3 days.

The nausea has been persistent since yesterday morning. Following directions, I'm eating small meals, trying to have at least a few oyster crackers pretty regularly so that my stomach isn't empty. I'm still keeping food down.

So, all things considered, it could be worse ... but I can think of lots of ways that it could be better.

Chemotherapy Day 1 - A Timeline

2022-06-09T18:50:00.004-05:00

8:29 - The phone rings. I answer, pretending that I wasn't still asleep. It's my Oncology Nurse reminding me to bring my prescriptions to infusion.

8:45 - Google "What should I wear to Chemotherapy?"
Answer: "The American Cancer Society recommends dressing in layers. Dress comfortably in sweatpants or yoga pants. Choose light materials so if you sweat you won't feel sticky. Wear a low neck or V-neck shirt so nurses can easily reach port to administer chemo. Bring an extra shirt in case you sweat through the first." Gross. I don't sweat.

9:10 - Send a sarcastically complaining text to my sisters-in-law, who helped me clean out my closet this week.
"Oh my gosh! Where are all my clothes? I don't have anything ill-fitted and outdated to wear to chemo!"

9:15 - Apply Lidocaine-Prilocaine Cream to the port site to help decrease the pain from the from the infusion.

9:58 - Make fun of Scott for bringing a wide-brim hat to chemo.
"Do you think it's going to be really sunny in there?"
"It's in case they kick me out and I need to go for a walk."
Acknowledge that it's a real possibility that someone will kick Scott out. Compliment him on his forethought.

10:00 - Arrive in the infusion room and get directed to chair #6. Settle in for the next 4 hours.

10:02 - Notice the lady across from me who is crying and the man to the left of me who looks to be in his early 30's. Get sad.

10:15 - Start sweating.

10:25 - Listen to a nurse trying unsuccessfully to get an I.V. started in the elderly patient next to me. Listen to her telling the woman that she might be a good candidate for a port, so they have better luck with vein sticks. Notice the patient is starting to cry. Get mad. Hear the patient wincing and see her feet twitching from the pain. Get anxious. Offer her my hand to squeeze. "Absolutely not. But thank you." Feel stupid.

10:27 - See Scott offer my elderly neighbor a trash can for her Kleenex and witness the glare of irritation she offers in return.

10:28 - Receive a text from Scott: "She is a real grouch. I don't feel sad for her at all." Laugh. Feel happy that I married him.

10:32 - Scott goes to the bathroom for the second time since we arrived. Fuss a little about him being ridiculous. I think he needs to see a urologist.

10:40 - Have my vitals taken. Blood pressure is106/70. Not too bad for a nervous patient!

10:45 - Learn that the application of Lidocaine I did was insufficient. I just smeared it over the port like skin cream. I was supposed to put a big glob on and then cover it with a bandage to prevent it from wiping off onto my clothes. The nurse asks me if I want to try again and wait another 45 minutes. I do not. I tell her I'll be tough.

10:50 - Injection. I was tough and it was fine.

10:52 - Blood draw. We have to wait for the results before the actual chemo to make sure my white blood cells, platelets, and hemoglobin are at acceptable levels. I think I live here now.

10:58 - Go over the anti-nausea plan. It includes three I.V. medications that I will get before the chemo and then two oral medications to take at home.

11:17 - Go over the medication plan for possible headaches with an oncology nurse. Become anxious, again.

11:32 - Learn about the steroid I'll be receiving today to help prevent hypersensitivity reaction to the chemo. My nurse tells me that medical professionals have a love/hate relationship with it, because it will help minimize the chance I develop severe itching or nausea, but it also can make it hard to sleep and make me irritable.
"Well, I don't care about irritability. That's going to be his problem" I say gesturing to Scott. "But I do like to sleep."

11:41 - Talk to the nurse about the Doxorubicin. This red drug can make my tears, sweat, and urine red. I'm not to be concerned. It also can cause mouth sores and a decrease in ability to taste. So, it is advised that I suck on a popsicle during that part of the treatment to constrict the blood vessels in my mouth. FINE. If I have to have a popsicle, I GUESS, I will.

11:46 - Have a conversation with Scott about how he secretly hopes I get red tears.
"Me too! I don't cry very easily anymore, though. Maybe we'll have to watch a sad movie?"
"I don't want to watch a sad movie."
"Well, how are we going to get me to cry, then?"
"I don't want you to cry."
"Are you paying attention?"
"Yes. You want to cry? Oh! The red tears! I'm with you now."
"You're not good at this."

11:54 - Pre-drugs. I launched a complaint with my nurse about one of the drugs looking like a giant syringe full of chicken fat. She promised that it wasn't and tried to convince me it looked more like a pina colada. I maintain my assessment.
The most notable reaction was a painful, prickly sensation from the steroid. It only lasted about 5 minutes, though. Luckily, the other two (including the chicken fat) were administered without issue.

12:08 - Take my I.V. pole to the bathroom with me. Notice that there is a little uncleanliness on the toilet seat. Wash it and then wash my hands before proceeding with my original purpose. Wonder how I went from cancer patient to scullery maid so quickly.

12:35- Popsicles! 1st chemo drug as a push from two different syringes.

12:58 - 2nd chemo drug as a slow drip.

1:22 - Take my I.V. pole to the bathroom again. Notice that I'm a bit tangled and make the misguided decision to walk a couple of circles around it to unwind the tubing. Get dizzy. Go to the bathroom. It's red already! Despite the forewarning, I was a little surprised.

1:46 - Chemo is over.

1:57 - Neulasta Onpro is applied. It is an on-body injector, meaning it will deliver medication 27 hours after application. There was a small needle poke and then the needle goes back into the device and leaves behind a catheter. Tomorrow evening, the catheter will slowly administer the medication, which reduces the risk of infection and hospitalization. It's pretty cool. You can read about it here.

2:05 - We stop at Costco so Scott can get a bunch of Liquid I.V. for me. The nurse recommended it, because the chemo is good for killing cancer but really bad for me. I have to stay really hydrated to flush it out.

2:50 - We arrive home to beautiful bouquets of flowers picked by Laila (who would like to go by the name Jesse, now). Peonies, Iris, Rhododendron, false indigo, phlox, salvia: they are all over the house and bring lots of joy to an otherwise mostly stupid day.

2:53 - I blew my nose. It wasn't red. Disappointing.

5:30ish - A little nauseous. Not terrible, but certainly noticeable.

6:18 - I ate half of a banana. It tasted weird.

6:44 - I'm bored of taking notes, so I'm stopping now. Plus demain ou peut-être samedi. (I just kind of felt like writing in French. It means "more tomorrow or maybe Saturday.")

PSA: It turns out that Blogger no longer supports email alerts. I have a genius tech friend looking for a solution, but in the meantime, please send an email to lhewitt27@gmail.com if you'd like me to add you to my update list.

Ready as We'll Ever Be

2022-06-08T22:02:00.003-05:00

Well, doesn't the universe have a witty sense of humor? I just tried to publish my post about being ready for tomorrow and the blogosphere deleted it. So, it appears I'm not ready. I have to do it all over again.

Cool.

Tomorrow is the first day of chemo and Scott and I ate a mediocre freezer pizza to commemorate the occasion. It isn't so much that we wanted pizza. It's more that we both used up all of our emotional and physical energy being productive and cheerful employees all day. Now we're drained. And we're scared.

We have done everything that we've been told that we should do to prepare.

The port placement surgery was on Monday.

This is what it looks like from the front. There are two incisions and a big lump.

This is what it looks like from the side. I turned my head so you can see the catheter snaking up into what I believe is my superior vena cava. This photo makes it look a little more exaggerated than it really is, but not by much. So far, we're not friends, my port and I. It's temporary name is Viper for being noodle-shaped and delivering poison.

The "Survivorship Information Session" was yesterday.

There was a lot to cover.

My echocardiogram was this morning. An EKG is not a painful procedure, but it did last almost an hour during which time the ultrasound wand felt like a bunch of slimy leeches slopping all over the left side of my chest. As an upside, though, I got to see all of the atria, ventricles, valves, etc. of my heart. My mitral valve (and probably yours too) looks like a little bird wing when opening and closing. I named it Cheepy, which is the name I give to most birds. There are a few exceptions. Robins are all called Robin Red Breast. Cardinals are called Cardi B. Owls are Hooty. Ducks are Puddleduck, Sasha, Ruben, or Quackeroo. All other birds are Cheepy.

I did not share that information with the tech.

I also did not tell her that squirrels are called Nutkin, chipmunks are called Chippy, and rabbits are all named Peter, Longears, Thumper, or Sir Bounce-a-Lot. I just didn't feel it was pertinent.

I have purchased all the self-care items that my oncologist's office recommended.

Wigs and head coverings for hair loss
Satin pillowcase and baby shampoo for sensitive scalp
IBD brush-on glue for brittle nails
Velcro seatbelt cushion to protect my port
Senokot laxative for constipation
Imodium for diarrhea
Systane drops for dry eyes
Fragrance-free lotion for dry, uncomfortable skin
Baking soda for mouth sores
Ice socks and gloves to prevent peripheral neuropathy
Saltines to keep by my bed for morning nausea
Two prescription medications for nausea
One prescription anesthetic lotion to put on my port before punctures

So, I guess we're ready, now.

We're terrified, but the only way out is through.

PSA: It turns out that Blogger no longer supports email alerts. This means that I am getting a lot of questions from well-meaning friends who didn't know that I already posted an update with all of their answers. I have a genius tech friend looking for a solution, but in the meantime, please send an email to lhewitt27@gmail.com if you'd like me to add you to my update list.

Be Careful What You Wish For

2022-06-01T22:40:00.003-05:00

Well, clearly, I screwed up. And I don't just mean that I ended the title of this post with a preposition. I mean something with much greater consequences, like barfing and cardiac toxicity and additional surgeries and the possible cancelation of our summer trip to England kind of consequences. And that last one really blows, because we have tickets to see Ed Sheeran at Wembley Stadium.

In addition to Teddy and all of the regular tourist destinations, we're also going to see the ancestral home of Scott's family (the Berry Pomeroy Castle), the county in which my grandfather spent his youth (Surrey), Etihad Stadium (Manchester City's home pitch), The Prince's Head Pub (a.k.a. The Crown & Anchor Pub from Ted Lasso), the town of Oxford, the Jurassic Coast, and the Warner Bros. Studio where much of Harry Potter was filmed. In fact, I just received an email today from the Warner Bros. (the studio, not the siblings) letting me know that two new sections have just opened: The Burrow and Professor Sprout's Greenhouse.

But enough of the good news. This is a blog about shitty news. I just swore. My apologies to any nuns, grandparents, or toddlers who are reading this.

So, back to radiation and chemo. Oh, did you not know that's what we were discussing? It is.

The last time I posted I was complaining about not knowing if I'm going to have radiation or chemo or nothing. I know the answer now and it is none of those options. The answer is BOTH. First chemotherapy and then radiation.

How did this happen? It's easy. Everything that has a such a small chance of occurrence that the doctors just tell me about its possibility as an afterthought actually happens to me. Well, not everything. I mean today we heard that there is a 1% chance I could develop heart failure and/or Leukemia. I draw the line there. Blood transfusion? Fine. Scalpel slipping through my skin from the inside? That sounds reasonable. Nipples falling right off? Okay. But heart failure? No thanks. I'll not have that, if you please.

In short, the OncotypeDX study of my cancer cells came back recommending chemo. The second opinion from The Mayo Clinic came back recommending radiation. So, damn.

I just swore again.

If you want to know all the details, they are these:

It is unclear if this is a second primary cancer or a true recurrence. There is no way to tell at this point. Because of the proximity and similarity to the first cancer, we're calling it a recurrence. That said, it could be a recurrence of the Invasive Cancer or of the Ductal Carcinoma in Situ. I guess it doesn't really matter, though, does it?
My Oncotype score is 26. For someone my age with a recurrence, the threshold for chemo consideration is anything above 20 and the threshold for strong recommendation is 25.
My score for distant recurrence within 9 years (meaning metastatic disease in liver, bone, brain, etc.) is 16%.
My score for relative risk reduction by adding chemotherapy is >15%, meaning that my recurrence score drops to <1%. That's what doctors call a very substantial benefit.
We were given two options for chemotherapy treatment plans. One is called TC. It is 4 infusions two weeks apart. The other is ACT for Adriamycin, Cyclophosphamide, Taxol. This is a teaching blog. Soak it in.
The ACT is more aggressive and more effective. It is 8 infusions, two weeks apart and is the one my doctor recommended for me based on the fact that Scott wants me to be around for several more decades of being the most entertaining part of his life. (He didn't say that, but I'm certain he would. I'm lots of fun.)
The chemo will start next week and my hair will fall out sometime in the next three weeks.
Each infusion lasts 3-4 hours.
The worst days will be days 3-7 after each treatment.
I will be given strong anti-nausea medications at the clinic and to take at home.
It's very likely that some foods will not taste the way I expect them to taste. I'm hoping that happens for zucchini. I don't like zucchini, so maybe it will taste like my mom's smoked turkey sandwiches or my dad's chocolate cake? Let's hope.
I will be immunocompromised. Stay back all of you sickies!
I will probably develop neuropathy in my hands during the Taxol portion (also known as Paclitaxel, but still called T chemo). Iced gloves will be provided for my discomfort in an effort to prevent it.
Before I can start the treatment, I will have an echocardiogram (or an ultrasound of my heart), a chemo information session (also unpleasantly named Initial Survivorship Appointment), and surgery to place the port.
The port is a small disk that will be in for the duration of the four months. It will be under the skin right beneath my collar bone with a catheter that feeds straight to my heart. The purpose of this to get the drugs into my bloodstream as quickly as possible so they don't have the chance to cause chemical burns or skin rashes from the inside out. Neat.
I won't know much about radiation until Friday. So, stay tuned for that exciting announcement.

In closing, here are some photos for your additional edification.

This is a port.
Isn't it tiny and cute?

This is zucchini.
It is yucky.

This is Professor Sprout with a Mandrake.
Mandrakes are tiny, but decidedly not cute.

This is the Jurassic Coast.
I think it's more magnificent than cute, but you may draw your own conclusions.

These are metastatic cancer cells.

They are beautiful, but I still don't like them.

No News is the Worst News

2022-05-25T19:45:00.003-05:00

I keep waiting to post an update until I have something to share, but it appears that may never happen. I guess I better just go with what I know ... which is frustratingly little. I'll put the inadequacies of my cancer knowledge acquisition into categories for your convenience.

Medication:
I've been taking Arimidex for two and a half weeks now, so only 4 years and 50 weeks to go! (Although, they have warned me that by the time we get to the five-year mark, it's probable that the recommendation will be a course of 10 years instead of a mere 5.) Apparently early results of several studies show that an additional 260 weeks may be beneficial. We shall see.

I'm managing it fairly well at the moment. The first week was tough. I was so weak and tired that I had a hard time walking down the hall to the copy machine. During a team meeting one day I started upright but became progressively slumpier (it's a word. I just coined it.) as the discussion progressed. By the 40-minute mark, I had morphed into a sea cucumber sporting business casual and testing the limits of my ergonomic chair. They sent me home. It was probably a good choice.

DEXA Scan:
Monday, I had a dual energy X-ray absorptiometry test to get a base line for my bone density. It was no big deal, unlike some of the other scans I have had involving contrast dye or I.V. radioisotopes. I was not told that I could not fly after my DEXA scan for fear of setting off metal detectors with my very self. So, that's good, I guess.

What wasn't good was that the technician seemed to be a non-sensical mixture of an adult and a hyperactive toddler. She threw her arms up to accentuate a loud "YAY" upon learning that I had not accidentally swallowed any calcium or antacids in the last few hours. I was startled.

Then, after I was changed and ready to go, she inquired with entirely too much excitement for the occasion: "Are you ready to play?"

I wasn't, but it seemed rude and possibly ill-advised to say so.

The test was fine, but I didn't really have fun, which is the point of play as far as I understand it. So, I guess she isn't really that good at her job.

Radiation:
To radiate or not to radiate, that is the question. The answer remains elusive. We haven't heard back from radiation since my last post. As a review, it's up in the air, based on several things but mostly a second opinion from the Mayo Clinic. Hopefully that feedback will come soon.

Genetics:
We met with a genetic counselor on the 12th. She was very nice and spent a long time explaining genetic code, mutations, variants, sequencing, chromosomes, and all other things I have forgotten since high school. Genetic testing on cancer cells can help determine why cancer occurs and if it poses a risk to others in the family. There is a high chance that we will learn something really helpful, like I was born with a predisposition for cancer or I have an acquired gene mutation that caused my cancer and may continue to encourage abnormal cell growth. I'm pretty curious to see a report card on my cells' delinquencies.

Unfortunately, there is a lot of paperwork and arranging before the test can take place. So, although we spoke to her two weeks ago, I don't go in until this Friday to have the blood drawn for the testing. Once that is done, the sample will be sent to Utah visit a lab and possibly go on a hike in Zion National Park. We won't hear anything back for about a month ... presumably because climbing to the top of Angels Landing is terrifying and my blood might need a couple of tries to work up the courage.

Chemo:
I hate this part of the story. I still don't know if I'm having chemo. We're waiting on the results of a test called Oncotype DX. This report will tell us both the likelihood of recurrence of my specific cancer as well as the extent to which that recurrence percentage would be affected by chemotherapy. I was supposed to get this information last week. Then I was supposed to hear yesterday. Spoiler alert: I do not have the oncotype results.

To be fair, I did talk to the oncology office yesterday. Unfortunately, what they told me was not the results of the test. Instead, they shared that there had been a snag between the lab and the insurance company. This resulted in a three-week lag during which time nothing had been accomplished at all. Naturally, I was delighted.

I have been assured (and I obviously trust every medical detail that I'm told) that it shouldn't be another three week wait and that answers are imminent. I remain unconvinced.

A Quick Radiation Update

2022-05-06T15:22:00.000-05:00

Scott and I met with the radiation oncologist today. He was awesome.

We conversed. We laughed. I cried ... twice.

Once again, there is a lot to report, but the short version is this:

Radiation is the standard treatment for a recurrence of breast cancer.
If we do radiation, he recommends 25 sessions, plus a 5 session boost at the end.
If we do radiation, the sessions would be 5 days a week for 6 weeks.
If we do radiation, we would start this summer, because of timing. It takes 1-2 weeks for the mapping/planning phase and you can't have any breaks in treatment. We have a vacation planned for June, so the planning would happen before the trip and the treatments would start as soon as we get back.
If we do radiation, I can expect to be tired, sore, maybe swollen, feel sunburned, maybe blister, probably have skin discoloration across my chest, into my armpit, and up on my neck. Also, about 30% of the patients have constricting around the implant that would require surgery.
Because of the lupus, all of these side effects, particularly the blistering and the likelihood of surgery, are increased.
Because my cancer in 2010 was a stage 1 and the cancer this time is a stage 1, the need for radiation isn't so clear. Both times it was a small, slow-growing, early discovered tumor.
Because I was so young with my first cancer, this indicates that radiation could be important.
Because I'm still young now, this indicates that radiation could have late-developing side effects many years down the road and should be avoided.

So, it's all debatable. It's ultimately up to me, but the doctor said there is both a good reason to do radiation and good rationale for skipping it.

I'm VERY uncomfortable with doing nothing. As much as I'm unhappy about the potential side-effects of both radiation and chemotherapy, I feel like doing neither will leave me incessantly anxious, waiting for the cancer to return.

As a result, today's doctor put in a request for the Mayo Clinic to review my case. They will look at both the pathology from 2010 as well as that from 2022. They will look at the oncotyping of both tumors. And, since it was at the Mayo Clinic that the initial lupus diagnosis was made, they will be able to review all of that lab work, as well. Within the next few weeks, we should hear back from them.

In the mean time, he also got me in to see a different medical oncologist. I explained my displeasure about Wednesday's visit and he just took care of it. So, that gives me relief.

I wish that I knew what lies ahead, but at least now we have a partial plan for a DEXA scan, genetic counseling, another medical oncologist, and oncotype dx testing. Oh, and we picked up my prescription for the oral chemotherapy drug, too.

So, that's my Friday.

A Visit to Oncology: The Good, The Bad, and the Ugly

2022-05-04T22:03:00.008-05:00

We met with the medical oncologist today. It was okay. It was SUPER frustrating. It was sad. There is much to report, but also much that remains unknown. I am trying to process everything and writing it all down seems as cathartic a response as any. So, without further ado - my Wednesday in evaluative thirds:

Good:
My current cancer is strongly responsive to estrogen (97%) and moderately to progesterone (64%).

Good:
I'm post-menopausal, thanks to the hysterectomy and oophorectomy of 2010. Therefore, I'm eligible for a course of Arimidex. Depending on if you prefer scientific or generalized internet writing, Arimidex can either be considered an aromatase inhibitor or hormonal chemotherapy. It's an oral medication to prevent the cancer from spreading and I'll take it for 5 years as an initial treatment and then a possible 5 years more after that.

Bad:
The Arimidex won't make me lose my hair, but the main side effect is joint and bone pain. It can cause bone loss, which I learned is called osteopenia. Disappointingly, it's not the result of the spell that Gilderoy Lockhart casts to mend Harry Potter's broken forearm after a particularly nasty quidditch spill. That's something else entirely and it requires a medication called Skele-gro which no one even offered to me.

I'm scheduled for a DEXA Scan, which stands for dual-energy X-ray absorptiometry. It will give us a base line for how strong my bones are or aren't so that we can monitor their porosity. Bones are supposed to look like honeycomb under the microscope. If mine look more like nerve synapses then we become concerned (or kind of impressed)? If I start breaking bones from sneezing or sitting down too aggressively, then I guess we have a problem.

Ugly:
My oncologist told me that I should institute a low carb diet for the next five years, as Arimidex has a tendency to make women gain weight.

"How much?" I asked.
"Do you really want to know?" he answered with a grimace.
"Yes."
"10% is the average. It could be less ... but it could be 20%."

Come on! I don't want to tell you my weight, but I will say that 10% is not a negligible 5 pounds. It's significant. I told the doctor that I wasn't interested in gaining 10% of my body weight. He didn't seem to think that my objection would make a difference to the medication.

Good:
The invasive ductal carcinoma is grade 1. That is the slowest growing type of cancer.

Bad/Good:
There was also some DCIS (ductal carcinoma in situ) in the sample. DCIS is considered a grade 0 and is sometimes called pre-cancer. If left untreated, it will become invasive cancer. Some of that was found and was removed during the surgery. Is there more still hanging out in there? Unknown.

Ugly:
The pathology report says that the "gross description" of the sample is "4 Fibrofatty core biopsies." That's just mean. I like French fries. I can't help it. Don't pick on me.

Ugly:
I don't want to be rude, but the lab report says that my case was "seen in consultation with Dr. Lundberg." I didn't meet Lundberg, but her/his name sounds suspiciously like Lumberg, who is the villain from the movie Office Space. I'm concerned.

Bad:
The oncologist I saw today is not the doctor that I had in 2010. I loved that doctor, but he moved out of MN, I think back to his native country of Germany. For the last several years I have been seeing this other oncologist who is fine, but not the same as the guy who held my hand through the misery of Cancer 1. I see him once a year for follow-up and have always considered him to be acceptable. Today, he was notably sub-par.

He asked me if I just had a mastectomy. "No. I had that 12 years ago."

He asked me about the lymphadenopathy and lymph surgery that I had in 2014. "That's when Dr. Petryk thought I had lymphoma, but it was later determined to be lupus."

He asked me if I am post menopausal. This was the killer.
"I had a mastectomy in 2010." (I pointed to the medical-gibberish on the computer that I have learned to decode.)
"A mastectomy doesn't mean that you are post-menopausal."
"An oophorectomy does. I had an oophorectomy in March of 2010. It's right here on the screen."
"Ooh. You're right. That's exactly what it's called when they take out your ovaries."
Me (in my head): "I KNOW! I'M NOT AN IDIOT. SHOW ME THAT YOU ARE NOT AN IDIOT OR WE ARE GOING TO SEE IF I STILL KNOW HOW TO DO TAE KWON DO."

I do, by the way. I have nun chucks and am not afraid to use them on anyone ... or on cancer.

Good:
Because I have had cancer twice and am young (medically speaking), it is concerning. My oncologist wants to do genetic testing on my healthy cells to see if there are any answers hidden in my DNA. The tests will tell us if there is possibly a genetic mutation with which I was born or some other reason that this is happening. His exact words were: "You're too young to have already had a cancer and a recurrence. Something is not right."
I agree.

Good:
The oncologist also ordered oncotype DX testing. This is a detailed look at the cells of the cancer tumor to determine several things, most importantly among them is the benefit that chemotherapy would offer to my specific cancer. I had this done in 2010 and the result fell into the intermediate category. In 2010, it was determined that chemo wouldn't be beneficial. This time, we will see. I won't learn that until early June when I go for a follow-up appointment.

What else? Oh, right. Laila and Owen got hit by a semi truck this morning on their way to school. It was a low speed impact. They are both okay. The car is likely totaled.

I guess that's it. I'm going to finish the trashy reality tv show I'm half-watching and go to bed. Tomorrow is a regular work day and then Friday is 2 hours with radiology. So, more to come I guess.

Thanks for your support.

Liz

Conversations with Liz - The Paparazzi Version

2022-04-28T14:54:00.000-05:00

When I started this blog in 2010, the main objective was to share the details of my cancer while I was home recovering. Friends, co-workers, and geographically distant family said that they wanted to be able to keep tabs on my progress without calling all the time and interrupting my naps. This was a wise plan, as a nap-deprived Liz is a cantankerous Liz. It's best to be avoided.

I had the initial surgery and was out for five weeks. Then I went back to work for a week of feeling human before I went back under the knife and was out for another six. During all of that time, it was really helpful to employ this digital format for medical information dissemination.

In 2022, things are different. We all text more than we talk in person. Texting provides an easy, unobtrusive way to check in on each other and allows the recipient the ability to respond whenever it's convenient. (Although, to most of us "convenient" had better mean within 42 seconds ... or else a subsequent, slightly more irritable message will be deployed).

Texting is great for me as a patient, because I can see all of the love that you are sending without having to pause my Netflix binge to answer the phone or the doorbell. P.S. Ozark finale is being released tomorrow, so don't even bother trying to call. I'll send you right to voicemail.

2022 is also different because my surgery was much easier and the recuperation much faster. As a result, I went back to work yesterday. I'm only managing half-days, but that is enough to get my mind focused on fundraising and communication for a few hours before I come home to nap and think about cancer some more. Half-days are also enough time for lots of people to come to my office to offer support and ask questions. So, I thought I'd use this archaic blog forum to answer some of the most popular for you.

Friend, "How are you feeling?"
Me, "I feel okay."

This is true. I do feel okay. But things are all relative. I like to think of the surgery I just had as a bee sting and the one from 2010 as a shark bite. Bee stings are annoying. They don't feel good and you wish they didn't happen. But, you take some Advil, ice the site, maybe have a glass of wine and then move on with your life. Shark bites, though, involve hundreds of stitches, blood loss, skin grafting, and muscle atrophy. That's basically what I went through when I was 34. In comparison, this is okay.

Friend, "How did the surgery go?"
Me, "It went well."

This is true, too. The wound is small and seems to be healing perfectly. The anesthesia was manageable and I don't think I threw up on anyone when I woke. I don't really remember, but I assume that I asked clever and medically appropriate questions about the details of the procedure and the cellular structure of a cancer tumor, but right now all I remember is that they told me I wouldn't be able shower for two days. Incidentally, this is why I now have a sizable collection of surgical hair nets in my possession. Apparently, I was concerned about how I would look - to my family and dogs - going without a shower. My semi-lucid brain thought that wearing a hair net around the house would be less conspicuous than bed-head. I was incorrect, for the record.
Scott and I went to see the oncology surgeon on Tuesday. I was prepared for the worst, which doesn't mean I'm a pessimist. It just means I have a memory. My minimal Google research told me that 25% of lumpectomies result in the need for a secondary surgery and my first bout with cancer was within that stupid quartile. So, I expected it would be again. Not so! The dissected part of Liz that made a trip to pathology was rolled around in some dye and shockingly - to me at least - the tumor cells were within the obligatory 1mm margin from the dye. So, that is what we call a success. It is also what I call suspicious, because my history doesn't involve a lot of success, but I'm trying to be cheerful about it.

Friend, "What is the next step?"
Me, "I go to see the medical oncologist on Wednesday and then the radiology oncologist on Friday."

Accurate. I do have those appointments. I also don't know much more than that. The Wednesday appointment will address medications, hormone blockers, and chemotherapy (which I don't expect to need, but am bracing for). The Friday appointment will address radiation treatment (which I have been told is the standard of care for a breast cancer recurrence and I do expect).

How much? How long? How often? I don't know. Will I feel okay or need to take time away from work? I don't know. Will there be more scans or will I start treatment right away? I don't know. Will I be well enough to go to Laila's graduation? I had better be or else I would advise everyone in the vicinity invest in ear muffs to drown out my incessant swearing.

Friend, "How are you doing?"
Me, "I'm fine."

Nope. This one is pretty much a lie. Sure, I'm technically fine in the literal sense of the word. I'm not inconsolable and unable to get out of bed. I'm not so weak and enfeebled that I can't care for myself. I haven't come down with a post-surgical infection necessitating a hospital stay. But, I'm really sad. I don't know what is coming and I do much better when I can plan. I don't understand how one wayward cell could have the power to make this happen again and what could possibly prevent me from feeling like it's just going to keep happening forever. Cancer blows.

I Don't Even Know What to Say

2022-04-23T18:59:00.008-05:00

I can't believe I'm doing this. It's been so long since I've posted on here that I've completely forgotten how to do it. I wish that I didn't need to re-learn. I wish that I didn't have anything to report. I wish that I wasn't sitting here reliving the nightmare that I survived 12 years ago, but I'm clearly not in charge. I have had a recurrence. It's the same cancer in the same spot. It's still stage 1. It's still estrogen-receptor positive. And apparently, it's completely and totally resistant to a bi-lateral mastectomy, a hysterectomy, and five years of Tamoxifen. What a stubborn, tenacious, cellular jerk.

Things have moved faster this time. In 2010, I found the lump myself and then it took six months, 3 ultrasounds, 2 mammograms, 2 gamma scans, 1 MRI, and 1 biopsy for the doctors to confirm what I already knew. It was a lot of waiting, a lot of confusion, and a lot of inconclusive results. My 2022 cancer experience has been markedly different. Here is a run-down:

March 26 - I noticed a lump in my left breast that felt like it maybe had aspirations to kill me.

March 28 - I called my oncologist (because I have one on speed dial. Doesn't everyone?) It was determined that the lump was likely scar tissue and the best course of action was to see my plastic surgeon.

March 29 - I went to see my plastic surgeon (because I also have one of those on speed dial). He felt the lump and right away agreed that we should treat it seriously and swiftly. He is one of my favorite physicians in the history of healthcare, by the way. If you need a referral, do let me know.

April 1 - I went to have an ultrasound, during which the radiologist recommended a biopsy that could go one of three ways:

1. Needle in, biopsy out. Easy-peasy. Lemon squeasy

2. Needle in, implant punctured. Oopsies all around.

3. Needle in, tumor is at an angle that is too hard to reach. Mission aborted.

I decided to go ahead with the procedure, hoping for scenario 1, but knowing that we could easily encounter 2 or 3. Six biopsies each the size of a grain of rice were taken. The implant was not damaged.

April 4 - I waited ALL DAY for results and finally decided that I didn't want to relive the 2010 diagnosis experience that occurred in my office cubicle. So, I went home. That evening, I got the call that it was not scar tissue and was, instead, a recurrence. SHIT. I screamed that into phone to my doctor. I swore ... out loud ... to a medical professional who was trying to help me. Then I apologized. Then he said, "it's okay. I swore, too."

April 5 - We went to see the oncology surgeon and learned that the best-case scenario was that I would have surgery and 4-6 weeks of radiation. Awesome. Super. I'm so glad to be here again. Worst-case scenario was that the cancer had spread to other parts of my body and was now incurable. Oh. That's less awesome. I see the difference, now.

April 8 - I went in for a PET scan. It showed that the cancer is contained to my breast which is news that caused waves of jubilation from all of those around me but I just kept thinking ... so what? I still have cancer.

April 20 - Surgery. My surgical oncologist took out the 6 mm tumor encased in 14 mm of my tissue that was not supposed to be inhabitable to cancer. And now you're up to date. I'm waiting for the appointment with my surgeon to tell me if we have clean margins. I'm waiting for the appointment with my medical oncologist to tell me if I will have radiation or chemo or both. I have cancer again. I did EVERYTHING I could to punch it in it's stupid little cancer face the first time and now ... I HAVE IT AGAIN.

It's unfair. It's infuriating. It's demoralizing. I am consumed with sadness and anxiety and guilt and fear. How many times am I going to be expected to do this? I took it the first time, understanding that statistically 1 in 8 women will have breast cancer in their lifetimes. Me having cancer means that 7 women in my family and friend circles won't. So, I took it. I shouldered it. I attacked it and did everything in my power to eradicate it. And, now, I'm sitting on the couch with an ice pack in my bra again.

What the hell? I mean, seriously. WHAT THE ACTUAL HELL?