Cancer Truths and Myths

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:

1. Chemo 
2. A week of terrible 
3. A couple days of feeling sick, but mostly like myself
4. A few days of feeling totally healthy
5. Chemo

During rounds 5-8 it's more like:

1. Chemo
2. A week of being wiped out
3. A week of being slightly less wiped out
4. 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

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

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

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:

1. 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.
   
   
2. 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. 
   
   
3. 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

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

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

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."