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!