Weeping and Healing

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

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

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

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

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

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

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

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

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

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

Healing armpit.

Gross blisters.

Clavicle burn.

Idiot squirrel eating my birdseed this weekend. 

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

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

I DID IT!

8 sessions of chemo and 30 radiation treatments all finished! 

And then there was cake. Obviously.

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

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

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

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

I'll ease you in.

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

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

This is me in the prepping area.

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

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

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

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

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

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

The same area a day later

And four days after that

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

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

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

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

Time for more cake, I deem.

November 10

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

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

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

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

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

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

Radiation Week 1

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

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

On Monday, I cried during treatment.

On Tuesday, I hyperventilated.

On Wednesday, they started me on sedative.

On Thursday and Friday, things went a little better. 

Tomorrow, we start again. 

That's my poem.

Preparing for Baymax

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Frustration and Radiation

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

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

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

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

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

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

Congratulations to Me!

I have successfully completed all eight rounds of chemotherapy!

No more ice mittens!

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

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

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

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

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

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

My office door even was treated to an upgrade!

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

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

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

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

So what's next?

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

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

3. Radiation mapping starts on Monday.

Xoxo, Liz

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."

Not in England

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.