Lisa's F-Cancer Blog

I haven’t been to a therapist in years, but for obvious reasons, figured it was a good time to return. A therapist friend gave me the name of someone highly recommended who also happens to be a breast cancer survivor. I met with her today for the first time, and really like her. When she cursed, I knew we’d be a good fit. She immediately apologized for her potty mouth, so I reassured her that it was fine, as I have one too!

At one point, I mentioned my friends helping with meals, and how I didn’t know when to add more dates. I only had dates for the week following each first round chemo treatment. She said after the third treatment, I’ll want it every week. That’s when the cumulative effects will really start to hit. So I added dates through February, and will add more once I know the surgical plan.

I also met today with a wellness consultant who came recommended by some friends. I filled out an extensive intake form, and we met virtually for an hour. My main motivation was to seek help for the nausea and other side effects. She will now use all the information I gave her and in a week or so, give me lifestyle, dietary, and supplement recommendations.

Since none of the traditional medications have helped so far, I might as well explore all avenues!

The worst symptom right now is the mouth sores. I’m not a coffee or tea drinker, and love having orange juice with breakfast. That’ll have to go… I’m waiting for the pharmacy to get its act together and fill the mouthwash prescription that’s called “magic swizzle.” In the meantime, I picked up an OTC mouthwash that was recommended, along with some Orajel. The tip sheet mentioned something about saltwater as well.

No other cancer-related appointments this week. Hopefully I’ll find some relief before it starts all over again next week!

Now that it’s been more than a week since my treatment, the ravenous hunger has decreased. The nausea isn’t as bad as it was last week, but is still ever-present. I now have mouth sores – another common chemo side effect. I’ve also noticed some foods are starting to taste different. I had a raspberry last night and it was downright awful!

After Rosh Hashanah services today, I had an acupuncture appointment at Magee. I tried acupuncture years ago to see if it would help with my migraines. Spoiler alert: It didn’t. But chemo is a whole new beast!

The acupuncturist, Carol, has been practicing for over 10 years. She specializes in cancer and chemotherapy support, among other things. And it turns out that thanks to the Glimmer of Hope Foundation, I get 10 free sessions throughout my care.

Acupuncture has become a lot more mainstream. In fact, the World Health Organization recommends acupuncture for over 100 conditions, including chemo. An April 2022 Time article reported that the “blend of anecdotal success, research-backed results, and growing level of openness from the medical community are all driving the popularity of acupuncture as a therapy. According to a 2021 World Health Organization report, acupuncture is the most widely used traditional medicine practice globally, and it’s gaining traction in the U.S.”

Carol asked about my side effects and health history. Ideally, acupuncture treatment occurs a day or two before chemo treatment. She said it was still worth getting today to establish a foundation and prep my body.

She placed around 15 needles in specific points on my body. The “needles” are actually more like filaments; they are very thin and flexible and are placed very shallow in the body. Since I get migraines and have a headache today, she addressed that. She also chose points that affect the immune system, energy, GI issues, and nausea. I barely felt them go in. A few felt a little more sensitive going in.

Then my job was to rest for 25 minutes.

During that period, a needle near my left ankle felt tender. Then a spot on my stomach wanted more attention. When Carol took the needles out (again, barely felt it), the area on my right calf felt tender afterwards.

Every time I asked about a tender spot, it was one that clearly needs help — my immune system, nausea, energy. And apparently feeling this is good; it shows that my body is responding.

She wants to spread out my treatments so we have a couple in reserve for when I’m on Taxol, because the side effects really build. My next treatment will be two days before my second chemo, which will hopefully make the side effects more tolerable.

I’ll take some pricks for the biggest prick of ‘em all: Cancer!

This morning I met with Rachelle, a genetics counselor at Magee’s Cancer Genetics Program. I had brought my iPad prepared to take notes, but she had a packet of printouts for everything she covered. I don’t know if she does this for every patient, but I’m here for it!

First we went over my family tree. She called it a limited structure because it’s so small for close relatives. Both my parents are only children, and my only sibling is no longer living. None of my grandparents passed from cancer. Knowing I’m of Ashkenazi Jewish descent helps with genetics since there are regional influences.

Of the hereditary causes of breast cancer, the most well known gene mutation is BRCA1/2, but there are others. Features of hereditary cancer include:

• Multiple family members with the same or related types of cancer
• Several generations of cancer
• Young age of diagnosis (age 45 or younger)
• Individuals with multiple primary cancers
• Rare types of cancer (male breast, ovarian, pancreatic)
• Suggestive tumor studies (TNBC<60)
• Ethnicity

However, based on the features listed, Rachelle’s estimate is that I have a 13% risk of BRCA, and a 16% total chance of one of the breast cancer genes. We’re pretty confident there’s no lineage risk through Mom. Even though there’s no cancer on Dad’s side, given that it’s a small family and mostly men, it could be masked.

Therefore, genetic testing will show if I have any of the genes that increase my risk of breast cancer. This information won’t tell me the chances of recurrence, but will reveal the chances of a new cancer somewhere else.

For example, did you know that if you have BRCA1, you’re at high risk for ovarian, prostrate (well, pick one), or pancreatic cancer, as well as melanoma?

The possible genetic test results are:

• Mutation detected or positive result
  • Increased cancer risk
  • Follow screening guidelines
  • Consider testing other family members
• No mutation detected or negative result
  • If known familial mutation, then true negative, risk not significantly increased
  • If no known familial mutation, then cancer risk based on family and medical history (and basically same risk as everyone else)
  • THIS IS THE ONE I WANT!
• Variant of uncertain significance
  • Cancer risk not yet known
  • Cancer risk based on family and medical history
  • More information may become available later
  • This is when they see a change but the data isn’t enough
  • These are about 1% of every gene looked at and they treat them as negatives because the majority get downgraded to negative later
  • Rachelle can also check these against other lab investigations and maybe get some more information if I end up with this result

After the appointment, I had a vial of blood taken. Results will take two weeks. While this seems like a long time, at least it’s not the 4-6 months it used to take back in 2016!

When the results are in, Rachelle will reach out to me and set up a video call. Depending on the results, I can meet with her again to get more information – like if there’s a mutation, she can explain the options and risk reduction strategies.

This should be interesting!

Wednesday, I had a virtual wig consultation with the Allegheny Health Network. They only had two curly wigs. One was too short and had weird swoopy bangs. The other one is too long, but I can take it to a wig salon and have them trim it. It’s also a darker brown than my normal hair. But it’s free! They’re also sending some sleep caps and other hair coverings.

Yesterday, I had an in-person wig consultation at a great store that provides things for hair loss, mastectomy, lymphedema, and gender dysphoria. It was started by a woman who had TN breast cancer back in the 1980s. She’s a three time survivor and is now 76. They didn’t have any curly wigs in stock so we leafed through a bunch of catalogs to find one similar to my current style. The one we picked is shorter; there was nothing my length with curls. I’m going to have them double check to make sure there’s not a longer curly style that can be shortened, as we weren’t looking at those lengths. I have a feeling the short version might be my best option.

There were some really fun colored wigs, but not in a curly style. I know, I could go with another style, but trust me – straight hair does NOT work on moi! 

In terms of my side effects, they’re much the same. The peeing every few minutes at night has continued, as has the nausea. Reglan hasn’t made a dent. I’ve also been ravenously hungry because of the steroids. I’m literally starving right after I eat. I’m not much of a snacker, but have been snacking. I’m hoping that at the one-week mark today, these side effects will start dissipating!

And of course now I also have bad PMS!

You want to give me all the things? I am woman, hear me roar!

My sleep-filled nights ended Sunday night, when I literally peed every 15 minutes (or less) throughout the night. This might be from the build-up of fluids on Friday leaving my body. The nausea is still ever-present, though somehow I’m able to eat and drink. Zofran doesn’t seem to help. Today, I’m trying Reglan. Any other options may cause too much drowsiness or other side effects, so here’s hoping this works!

It’s kind of hard to do things, even read, when I’m feeling crappy and restless. I’ve tried to take little naps each day and treat myself when possible. Like Sunday, I requested a favorite cold treat that I hadn’t had all summer – that hit the spot!

This morning, I met with an endocrinologist. Turns out that “low” thyroid level might be normal for me. Keytruda does affect the thyroid, so we’ll monitor things. She told me what symptoms to look for, but as of right now, there’s nothing to worry about.

As I prepare for losing my hair, I’ve decided that when the time comes to shave it, I want to do different styles on the way out. Any suggestions, besides the obvious mohawk? Don’t say a mullet — I have my limits!