God Save The Queen

God Save the Queen 

The title song for this blog happens to be the National Anthem for the United Kingdom. I am by no means comparing myself to the British monarchy or Queen Elizabeth. However, as the reigning chemo queen, the title is appropriate. The Chemo Queen has met her match in Gemzar!

I have completed the first cycle of my new chemo regimen. And it couldn't come too soon. My body needs to recoup! Gemzar is kicking my blood work's butt!! Every chemo I've been on had the capacity to lower by blood cell counts, yet to date I have not experienced this until Gemzar. I count my blessings every day on just how well my body has handled past treatments. Here is a snapshot on the Gemzar impact:

 As you can see, my white blood cell count is in the toilet, beginning a steady decline since my first treatment on 12/10. Needless to say, I am under house arrest (not literally) while my counts are so low. Any type of bacteria or virus could create problems for me at this point. 

Note that labs are taken prior to chemo, so God only knows how much lower they got after my 12/23 treatment. Let's just say the doctor was concerned enough to reduce my dose on 12/23 AND proscribe a general 7-day antibiotic to help protect me while my body begins to heal. 

The antibiotic, Levofloxacin, is a treat in itself. I finally took the time to read the possible side effects. WTF!!! This antibiotic can kill me. Holy crap! I used a new phrase after I read them: What the f*ckity f*ck!? Sorry for the language but I think it's appropriate. In addition to your basic standards of nausea, diarrhea, headache, and dizziness, here are some of the more fun possible side effects:

• Possible liver problems
• Possible kidney problems
• Unusual bleeding/bruising
• Tears or breaks in the aorta
• Tendon rupture, most commonly the Achilles tendon
• Changes in sensation and possible nerve damage
• Central nervous system effects (hearing voices, see things, seizures, tremors)
• Worsening of myasthenia gravis (a condition which causes muscle weakness)

To top things off, my iron is really low. They are adding an iron infusion when I go in for chemo next week. Isn't that special!

What I've discovered this past week is that I can be full of energy one day, then really tired the next. There are days I have a lot of stamina and feel good. There are other days where I don't feel bad but I don't feel great. I am sure this is of no surprise to anyone but me.

So .... what is the chemo queen to do? Practice common sense:

• Eat well
• Eating by itself can be challenging simply because I have no appetite
• This is getting better
• My weight is stabilizing and the downward slide is on vacation
• Sleep well
• I have sleep aids and CBD oil if I need them
• I am not a napper, but I took a three hour nap today (this is a tired day)
• I may need to nap during lunch when I return to work on the 4th (still not going into the office)
• Keep moving
• Continue walking Sam, even when I don't have as much stamina
• Continue daily chores such as laundry, dishes, etc.
• Strengthen my core

I think all of these things are necessary to minimize the impact this protocol is having on my body and to improve my overall chances of sticking around a few more years.

One other thing happened this week that has happened before, several weeks ago. I started seeing double ... for about 3 minutes. It went away as fast as it came on. The first time it happened, I had just started my hot shower. This past time, last night, I had just wrapped up in a blanket while watching TV. If I close one eye, I see fine. I recently went to see the retina specialist and all is fine from an eye perspective. I doubt this is cancer related, but definitely worth a discussion with the PA when I go in next week.

Note: Not looking for sympathy ...  just keeping it real. I knew this journey would be a "ride" and it is!

Wishing everyone an early Happy New Year! I'm ready for 2020 to be over!

Medicine

Medicine by New Hope Club 

Once again, while searching for the title of this post I discovered new music by a young group called New Hope Club. Catchy tune, cute boys that would melt any teeny bopper's heart. Take a listen. They're fun. Note: I do not own the rights to this music or photo.

I started my new chemo regime yesterday, Gemzar. It was mostly uneventful .... well, except for the killer dance moves during the steroid drip!. Since it is new chemo, I chose to read during chemo instead of dance. Now that I know what to expect, dancing is on the agenda for this week's session, even through the Gemzar drip!

The real excitement happened before chemo during my meeting with Rachel. Poor Rachel, I kept her for a long time. I had questions, some soft balls, some pretty rough. Here is what was/is keeping hubby and I up at night:

• In the liver mets thread at Breastcancer.org, many women indicated they were taking Gemzar plus a companion medication. Is that something I should do to tackle the lymph nodes?
• No. There are certain conditions where Gemzar is given with other drugs but I don't fit the profile at this time. Yay!
• Microwave ablation - what is this? Is something we need to think about?
• Not at this time. Typically, this is done when you have multiple or large tumors on the liver. Dr. Kocs would not recommend unless it is necessary.
• In the PET write-up, the radiologist used the term avid in relation to the liver tumors and lymph nodes. What does "avid" mean in this context?
• The radiologist was referring to the high metabolic rate overall in my tumors. Great! But not unexpected. That is what the Gemzar is suppose to fix.
• What is my short term prognosis?
• Very good. I handle chemo well. We still have several options available to us. Other than cancer, I am quite healthy.
• What is the long term prognosis?
• I know average life span is three years. My plan is to hit that and exceed it; my target is a minimum of five years, hopefully more
• Again, very doable, given my current health and response to treatment
• Is there a maximum amount of chemo a person can take over their lifetime?
• It varies by individual. How well do you handle chemo? 
• There is no set limit on how much chemo a person can have in their life, providing their body is handling it well
• There are a couple of drugs that have a maximum lifetime amount, but that's it.
• My liver has been "talking to me" these past few days; mainly cramping up sometimes when I bend over or tighten when I cough
• It's been four weeks since my last chemo, the longest stretch we've had in a long time
• We'll keep an eye out and see if it continues
• I think once the Gemzar kicks in, the liver will behave
• I noticed my legs are weaker than what they were a year ago
• First, COVID happened and I am not walking the 15K steps a day I use to walk
• I am out of practice getting down low to get that an odd angle for a shot of an animal, a creek, a bridge
• I need to make sure I exercise on a regular basis to help keep my strength up. 
• I'm thinking squats ... ok done thinking squats
• Actually, I need to do squats because I used to be able to get down real low and get back up, just using my legs; squats will help me get there.

Thanks for putting up with the ramblings and angst of an old woman. I suspect I am not the only one with these type questions. Maybe you learned something along the way or took some comfort in the fact that there are others feeling and thinking what you are. 

We got this!!

Update! 62 Countries!

When I first started this blog in October 2019, I was pleased to see that the blog was being read in 9 countries by Thanksgiving and 19 countries before Christmas. Who would have thought? As of today, the blog is being read in 62 countries with Israel recently the party. Welcome! The ladies from https://www.breastcancer.org are spreading the word. It is a great place for information, comradery, support, and hope! Friends and family play a role as well. Thanks all!!

The new list includes:

• Argentina
• Australia
• Bangladesh
• Belgium
• Brazil
• Cambodia
• Canada
• Chile
• China
• Czechia
• Denmark
• Dominican Republic
• Egypt
• Estonia
• Finland
• France
• Germany
• Greece
• Honduras 
• Hong Kong
• Hungary
• India
• Indonesia
• Ireland
• Israel
• Italy
• Japan
• Latvia
• Lithuania
• Luxembourg
• Malaysia
• Malta
• Moldova
• Netherlands
• New Zealand
• Nigeria
• Norway
• Pakistan
• Philippines
• Poland
• Portugal
• Romania
• Russia
• Senegal
• Seychelles
• Singapore
• Slovakia
• Slovenia
• South Africa
• South Korea
• Spain
• Syria
• Sweden
• Switzerland
• Taiwan
• Thailand
• Turkmenistan
• Ukraine
• United Arab Emirates
• United Kingdom
• United States
• Vietnam 

Only 140 more to go!!

Whataya You Want From Me?

 Whataya You Want From Me?

This is the question I want my cancer to answer. We (hubby and I) feel like its two steps forward, two steps back. Progress is hard to see. I think it's there ... I have to believe it's there ... but it's hard to find sometimes. Am I upset? Angry? No, just frustrated. It's time for a win. 😞

I posted on Facebook last week that tumor markers are up again - to 54 this time - and that we are moving up my PET from December 18 to December 3.Results are in. Drum roll, please! Yes! We have progression! Whee!! Here is a snapshot of the results:

Is the news really bad? No. But it isn't great. In a nutshell, we have new tumors in the lymph nodes, many are too small to measure. They did list three and I included them above and labeled them as new. Many of my existing lymph node tumors increased in metabolic activity; one tumor increased in metabolic activity but decreased in size. That's a wash in my book but I included it with red font. The liver is stable, which is good; of the three lesions on my liver, two decreased in activity while one increased. BTW - I didn't know I had three in my liver; apparently #3 showed up in the last scan and I spaced right over it. They saw "something" in my lungs last time, but it's gone now; scarring is there but other than that the lungs are clear. This little sucker comes and goes every other PET. I should count my blessings.

So now what? We change treatments .... again! Welcome to treatment #4 - Gemcitabine or Gemzar for short. I start the new chemo on Thursday. Each cycle is three weeks on, one week off. Rinse and repeat. We will do another PET after cycle 2. This is another infusion. I've asked that they keep the steroids down to 2; I don't want to go back to eating everything not nailed down and walk around like a beached whale, with my clothes bursting at the seams with every step .... just one step away from an embarrassing rip in the clothes. Thank God I worked from home while they adjusted the steroids. I can at least wear most of my clothes again.

Side effects? The normal cast of characters: low red and white blood cell counts, fatigue, nausea or vomiting, mouth sores, diarrhea, and hair loss. We get to add in a few more possible side effects: decreased plateletes and risk of bleeding, fluid retention, and rash or itchy skin (can't wait for this one .... NOT). 

Some uncommon but serious side effects include: 

• Capillary leak syndrome (fluids and proteins leak out of your blood)
• Liver problems - we will keep a close eye on my enzymes
• Lung issues - shortness of breath, difficulty breathing

I pray that I can retain my Chemo Queen title and crown!

I met with the PA on Friday; I wasn't scheduled to meet with Dr. Kocs. They offered a telemed visit, for which I initially declined. But after thinking about it some more, I think I will ask they schedule this. Hubby and I have questions regarding my care to date, long term care, is this normal, etc.

I'm okay. We're okay. I feel good ... just frustrated.