My Journey

So…I should put this out there before I say anything…I’m kind of whiny when I don’t feel good.

I woke up at 1am and went back to sleep then up again at 2:30am and spent the next 3 hours in the bathroom. At one point trying to sip some Gatorade, which I threw up about 10 min later.

Thankfully, I did NOT throw up our yummy ravioli dinner BJ made me and I ate a lot of!

I was then able to sleep for about 3 more hours before attempting to start moving to begin my day. I think I have officially gotten to what people have been telling me is the “flu symptom stage”. Achy, queasy and generally uncomfortable. It’s not much fun.

I have eaten some wheat thins and applesauce today and I’m trying to drink water (I maybe get a 2 out of 10 for water drinking).

I only missed one meeting and a couple minutes late to another, otherwise I managed to make it through most of my day. I’m resting now before I jump back into it again.

Just a short update to everyone that I’ve been feeling fine since chemo day. I was expecting to get hit definitely harder than I have as far as symptoms go this weekend and so far I’ve been feeling (generally) fine.

I’ve had a few headaches and backaches and possibly fatigue, but nothing really worse than any other weekend of my life. I went grocery shopping and picked up lunch on Saturday and felt fine the whole time. A bit tired when I got home and we got everything put away but nothing outside of my normal ranges of being tired of being on my feet after running errands.

Baya keeps waking me up at 3am, so the fact that I feel a bit queasy right now…I’m trying to decide…is it a reaction to the chemo or the fact that I’ve had 5ish hours of sleep instead of 6 or 7 hours. Really…could be either. Does it feel bad enough to take medication for it? Not until I try a few more hours of sleep to see how I feel after I wake up again.

So, no news is good news for me at this point.

Early morning start…with no coffee, water or food. I get that they have to put the chest port in at the hospital, but is it really surgery? The oncologist said they’d numb my skin so I wouldn’t feel them putting it in. But I don’t know more than that, will I be asleep or just looking away so I don’t have to watch? Things I wonder about…and should have an answer for soon

I’m about 24 hours late in adding to this…life happens.

I have answers though! The chest port is like a mini surgery. I had to get an IV, which took some doing but the guy was very nice, Ian is his name, and he reassured me that the vein on the inside of my elbow was good for an IV if I ever needed to know for future reference. I was awake for it and my friendly Ian RN was my watcher during, to make sure I was ok throughout.

I left the hospital with orange sterilizer on my chest and shoulder…a bit like a bad spray tan…that got cleaned up Friday morning.

BJ got sandwiches for us to eat between hospital and the office around the corner where we went for chemo.

Stephen was my main nurse and he took me through all the chemo stuff before they started giving me any drugs. And I got a packet of papers to read about the drugs and side effects, some we covered and some he left me to read.

It turns out that my drug mix is TCH instead of TCHP. After reviewing my bloodwork, the oncologist decided I did not need to take Perjeta with the Herceptin (antibody drugs). And my Herceptin is really something that starts with a K….I need to learn the name, it’s a biosimilar drug.

Anyway, they started me off with a steroid and anti-nausea meds, and then I iced up my hands and feet and he started the Taxotere, after that was Carboplatin and lastly the Herceptin/K…drug. After the last one started up, he fixed up a Nuestra patch, which basically puts a tiny flexible needle in your arm that is auto-timed to release the drug 27 hours after it’s put on (which is right after your chemo is finished), so you don’t have to take another trip into the office for a shot (yay). It feels like a pin prick, so not too bad in the world of needles. I had them put the extra adhesive on so I didn’t knock off the container holding the drug (which would require me to then go in and get a shot). The drug is to help boost your white blood cells to help with recovery after chemo and help prevent one of the side effects (some kind of infection). Extra adhesive, good (I kept running into walls while turning right), bad (It hurt more to remove after the drug dispensed). I’m going to have to make a call on whether the good outweighs the bad for next time.

Chemo day 1 down in the books. I left feeling fine, no reactions to the drugs and we learned that I’m somewhat sensitive with some receptor that runs by/near the port. I could smell one and taste the other fluid that the use to clean and flush the port. Apparently you have receptors for smell and taste in the area and some people can smell and taste, even though it isn’t going near your nose or mouth. Kind of cool if you think about it.

The port was fine all day, got irritated when they were fiddling with removing the hospital tape and covering it up to protect it but that eased off as we got home.

I did start getting a headache in the car and felt a little queasy. We got home and I had some caffeine (first of the day) and some soup from Lily Kai and the headache eased off, so I think it was more likely due to my lack of caffeine than chemo drugs. I took some advil before I went to bed and slept pretty well until Baya woke me up at 1:30, and then 3, and then 4:30… So, I guess it was good I went to bed a little early.

Friday has been fine. I took my after chemo drugs as planned with breakfast and lunch (I think more steriods, a long name starting with D). And I took a Claritin this morning also. Woke up with a headache so attacked it with caffeine, food and claritin. Seemed to do the job as I felt fine from late morning on.

The Nuestra drug dispensed as expected and I already told you about the removal…so far the reactions have been a flushed face (took my temp, only 97.5° so no worries there) and now I have a little spot of pain on my right hip…but that could also be from how I was sitting at the computer while working today…so hard to tell with these aging bones I have…I might take some advil as I head off to bed and see how that helps for morning. I need to start going on short walks again. Everything I’ve read and been told says it helps across the board so I need to make it a priority.

We’ll see how the weekend goes as the drugs wear off but so far so good! We’re taking a trip to the store to stock up on the over the counter meds they recommend for various side effects, so I’ll be prepared for anything!

The new COVID test is not as bad as the last one I took. It was a little bit longer but it doesn’t stab your brain, so that seems like a decent trade off.

I talked to one of the oncology nurses on Tuesday and she was very helpful talking through a few things that they’ll also cover on Thursday because I didn’t have my chemo training ahead of chemo. One thing that didn’t happen was getting the prescriptions ahead of time. She called them in but the pharmacy must have been out of one or more because I got a message that they were reaching out to the doctor for an alternate.

I was supposed to get an antihistamine (I think is what it is), an anti-nausea drug and an anti-anxiety drug. I have none of them. They are giving me some (well some antihistamine and anti-nausea) with my chemo I believe so I’m sure we’ll get the situation worked out on Thursday.

I’m not feeling that anxious about the chemo so I’m sure I’ll survive without the anti-anxiety drugs for the interim. It takes so much energy to be worried about things out of your control. I do like to PLAN though so I spend that energy coming up with the 700 solutions to how I could potentially feel after chemo…now THAT is a good use of energy! 😁😁😁

Update after my oncologist appointment.

I will be doing 4-6 chemotherapy treatments, 1 treatment every 3 weeks starting on June 11th. This is done via IV. Simultaneously, I will be starting 2 antibody medications (also via IV). The 2 antibody meds are also 1 treatment every 3 weeks but will continue for a year. Given this I will get a port put in before my first treatment next week (my veins have been iffy to find so this will make it easier). It only prevents half the needle jabbing as I also have to get bloodwork done the day before each treatment so they can check my levels before the next dose of medication. Although…now that I’m thinking about it, maybe they can use the port for that as well. Here’s hoping!

The combination of chemo with the 2 antibody medications is the best way to fight the HER2+ receptors I have between killing the cells and each of the antibodies attaching to a different receptor to stop the spread of these type of cells.

This is step one and is the systemic treatment for my body.

The localized treatment is the radiation, which will start after chemo is done to kill off any cells floating around my breast(s?) specifically to stop them from spreading out.

The endocrine treatment is also started after chemo and is in pill form to manage the estrogen receptor issue. This will be for about 5 years, I believe.

So, chemo and antibody treatments via IV for the next 12-18 weeks, once every 3 weeks. Then pills, radiation and IV for antibody treatment will all coincide after chemo is done for the length of radiation (which I think is more 5x/week for 2-4 weeks kind of a treatment). Then just pills and antibody treatment via IV for the remaining portion of the year of treatments. And THEN just pills for 4 more (ish) years.

So pretty much this summer could have moments of suckiness but then I should get better. The antibody treatment, though every 3 weeks, isn’t supposed to have any side effects, so lost hair should start growing back once chemo is done and energy levels should return after radiation is done. All in time for fall and winter’s return when it’s dark all the time and I want to sleep a lot instead of walking…hmmm…I’m going to pretend that I’ll have gotten so used to walking during summer to keep up my energy during treatments that it won’t matter (which we all know is a lie but at this moment in time I can still pretend!)

That’s my update for now. I’ll let you know how it’s going and any fascinating things I may learn during this experience!

I realized this morning that I’ve been so busy with work that I never posted an update that I got my appointment with the oncologist scheduled for Monday, June 1st at 3pm.

There’s nothing like taking a call on your cell phone while in the middle of a work conference call on your computer (no video, conveniently, so they couldn’t tell I stopped paying attention to them briefly). So, I didn’t have a lot of time to ask questions.

I did follow up with a message of questions the next day, which Michelle called back to answer on my voice mail, as I had missed her return call. The main questions were to make sure she was able to get all the relevant images she needed from the other facilities and to ask about the oncotype test, which we hadn’t known about whether or not the surgeon had requested.

My understanding about the oncotype test is that it’s a good indicator to help determine whether chemo will be beneficial in a individual’s case. Her voice mail back said that the test had not been ordered and the oncologist had said it wasn’t necessary so the surgeon did not request it.

Now, I’m not really sure what that means for me…is it not necessary because I’m estrogen+ and HER2/neu+ so I automatically fall into the category that requires it? Is it an age thing? Or is she going to talk me through it and say it’s not necessary for specific reasons? Given that she wants an in person appointment rather than a video call, it FEELS like that puts things on the side of needing chemo because…well…it just does, rather than a video call where it’s still a conversation but not as effective as face to face (masked).

So, I’m hedging my bets and mentally preparing for that conversation and resulting treatment and glad that my IV bruise from surgery has gone away even if it’s still a bit tender and I have the smallest of scars where the IV was. Cause you know, in all of this, one of my biggest concerns is how many times are they going to stick me with a needle…

So, more waiting to find out the answers to my questions of why we did not need an oncotype test (and if and when I start chemo).

Meanwhile, our new backyard patio furniture is coming later today, yay! Early enough to enjoy for a couple of evenings before it rains this weekend (of course). Although, to be fair, I’ll take the rain over the 98° of the other day, which was so not fun to be working in by early afternoon.

Next update after my appointment with (hopefully) news on next treatment steps and timing.

Have a good rest of May everyone!

I called the oncologist office today and got a call back from their very nice new patient person, Michelle.

She’s putting my chart together and reaching out to various places to get what she needs (images, test results, etc) and will contact me on Tuesday on type of appointment (in office or video) and timing (could be dependent on a test result I can’t find in my chart so we’re not sure if it’s been sent out and the results could take 2-3 weeks to get, so she’s asking the surgeon). So, I should know on Tuesday how long I’m waiting to have this next appointment.

This appointment will be to talk about whether or not I should include chemo as my next treatment. On message boards, I’m hearing that the results of the (possibly missing) test are a good indicator on whether chemo will be beneficial for a specific case, also it’s generally more beneficial for women who haven’t been through menopause (I am now currently on the fence about how I feel about my age!) More waiting ahead of me.

Meanwhile I’m laying on the couch staring at the bright outdoors trying to convince myself that going for a walk is the right thing to do…it’s an office holiday, I’m at 2 weeks from surgery when I can start doing more active things and stretching my left side to regain lost movement, basically I have no excuse not to go out and walk.

Ugh. Ok. I’m going.

I’ll update everyone on Tuesday when I have news.

I got to wake up to test results this morning with a note from my surgeon saying she reviewed the pathology report and it looks great. 2 normal lymph nodes and the area around the mass she removed for testing are clear.

She has surgeries today but will try to call between so if I get any other info I’ll post but otherwise next update likely next week after the doctors all meet to review my case & reports. And that may just be to set up later appointments as she mentioned previously it would probably be 3-4 weeks before any next treatment steps after the surgery.

The next conversation is about whether chemo is needed, useful/beneficial in my case or not. If so, that will be the next step, if not, I’ll go into radiation directly. Super powers ahead!

Today was much better. I took some Tylenol and Advil this morning and a prescription pill tonight but mostly to maintain more than anything as I’ve felt much better today. I think it was more about how I was sitting while working than anything yesterday. I actually forgot to think about taking more Tylenol this afternoon, which is always a good sign.

No news from the surgeon. It was unlikely we were going to hear today…but there’s always wishful thinking to carry the day. Maybe tomorrow.

We had death rain today which depresses the dogs, so they did much napping and hiding under the covers to avoid the rain that’s certainly out to kill them. Another spring day in May.

As the day progressed, the muscle soreness grew…I finally caved and took a pain pill with dinner, after I spent a couple of hours resting and icing before dinner. It seems to be more muscle pain then pain from the incisions. I think I’ve been holding my body in bad ways and it’s starting to rebel. I need to work on that.

It’s weird that it hit me today, 4 days after surgery. Maybe that’s normal but not having been through a surgery before, I assumed the first 2 to 3 days would be the worst. But maybe it took a few days of me holding my body in ways it’s not used to for it to start yelling at me…that also makes sense.

I fell asleep before posting but had a good night’s rest so I’m ready to face the day…well I will be, once I crawl out of my warm bed. I love being all snuggled up in bed. I’ll say that about the lockdown, I get more time in bed in the morning instead of commuting!

A brand new day ahead!