New Diagnosis--Stage 4 and first chemo

January 6th, 2025...I saw the oncologist today....I'm officially stage 4 after the PET scan...the cancer has spread into the chest pectoral muscles....because it has spread past the lymph nodes, that is a stage 4. Had it stayed in the breast and lymph nodes, it would have been a stage 3 which is curable. Stage 4 is not, they can only try to control it. My options are to start chemo, (Jan. 7th) if the tumors and cancer respond really really well to the treatment, it's possible that I could have 4 chemo treatments then move into immunotherapy treatments.  I will have to have PET scans every three months for a long time. At some point if the cancer is contained or hard to see, then I could possible have PET scans every six months. That would be an optimum treatment plan! If the cancer does not shrink enough, I will be getting a total of 6 treatments every three weeks....I am currently also going through genetic testing which helps determine treatment plans and options, and insurance does now cover that, at least mine does. (I am on Medicare and an AARP supplement, but NOT an advantage plans, those are poor coverage I have been told, for cancer treatments.)

My hospital and doctors had me attend a chemo teach class today. It wasn't really a class. A nurse practitioner sat down with me one on one and carefully explained every step of chemo, what the drugs were, what to expect on side effects, and asked me many times what my questions were. She spent about 40 minutes with me and I could have had longer time if I wanted to, or needed to, but I had asked a lot of questions in my breast support group, and really didn't have very many. It was very helpful. The next day I had my first chemo treatment and here's how it went.

January 7th, 2025....I arrived at Beacon Memorial Hospital in South Bend, about a 22 minute drive as that is where my oncologist is located and where my treatments will take place. Beacon Memorial is connected to the Mayo Clinic network, so they have access to latest treatment info and I feel confident it's a good hospital with great staff, which was confirmed today after all was said and done. I brought a pillow for my lap, a big water jug, a small backpack with a tablet loaded with downloaded books and a couple of movies, chargers, snacks (which I didn't need) and my phone. I debated bring chilled socks and hands packets and decided not to for my first chemo. Some people say that chilling your hands and feet with ice packs (BRRRRR!) for 20 minutes off and on will help prevent neuropathy of hands and feet, which one of the medications commonly causes, but I'm going to wait till the second treatment to try it. You'd have to bring a small cooler to keep it in, and I didn't want any more "stuff" to carry in today. I asked the nurse if they worked or not, and she said with mixed success, wouldn't hurt to try. The kind I bought were off Amazon and here is a link:

cold therapy hands and feet

My appointment was 9:00. I had to wait a bit to get in for labs for bloodwork but I brought all kinds of things to do today to stay busy while waiting.

First they test your blood for white, red cell counts, kidney functions and all kinds of stuff. I had some low numbers but nothing low enough to need remediation before getting treatment. I will have blood work every time to check for infections or signs my body isn't handling chemo well. If something is too low, they can administer treatments or slow things down to get levels back up. So far, so good today. At 9:40 I met with my oncologist and he was great. He went over the treatment options since I was now a stage 4 patient, and explained everything simply and answered honestly my questions. I asked him how has my prognosis changed since the last time as far as life expectancy. He said the best, honest answer he can give is it's going to be from PET scan to PET scan, and I appreciated that. No false promises, no "guesstimate" as to how long I have. Everybody responds differently. There are people living with stage 4 for years, there are people who succumb to the disease earlier. You just don't know and I'm ok with that.

Then the waiting began. The oncology department orders the drugs from the pharmacy. If the pharmacy is backed up, then you wait. I was in a room with five other patients in nice, easy recliners. We were spread out, but you could still hear personal conversations between patients and nurse staff, but really, nobody was listening to others, we were all kind of in a trance, waiting for our own treatments to start. There were no chargers in the chairs, but nearby plugs if you needed to charge your devices. I sat and watched everybody for a long time and wondered about their situations. 

Treatment started at about 11:30. (Ten o'clock was my original suggested start time on my appointment calendar). I received three separate drugs today. The first one, Taxotere, was the longest. They watch and check on you carefully about every 15 minutes to make sure you are ok and they are watching for any adverse side effects--like flushing, dizziness, feeling hot, feeling weird, etc. At the completion of the first drug, then they set an observation time of 30 minutes just to be sure.  I did fine. It took about an hour and a half total time. Then they flush the line and start the second one. I received Perjeta. It was about an hour. There were short waits between each drug. The last one was the Herceptin drug, targeted to the most aggressive spreading cancer cells. 

Around 12:30, I was hungry! They had a complete printed restaurant menu that you called the kitchen on your phone while going through treatment and you can get anything you want on the menu--breakfast, lunch and dinner--FREE, (well, it's part of your treatment cost). The options were AMAZING! There was the usual grill options--sandwiches and soups. There were chef's specials daily. There were all kinds of options for many different categories of food. The food was delicious! The guy next to me ate twice while he was there, he said the food was worth coming to chemo. Hospital food? Seriously? But he was right. It WAS terrific! I ordered two Mexican street tacos which came with salsa and sour cream, a lemonade, and a fruit plate salad with cottage cheese. YUM! It took an hour to get there, kitchen was busy, but well worth the wait.

By this time it was 2:30, and I was enjoying talking with the other patients next to me and a really active lady across the way. She said to drink TONS of water and that she was breezing through chemo on her third treatment. She had three big water jugs next to her and said she drinks a minimum of 96 ounces of water every single day. That has been the most common advice I have heard and read--drink, drink, drink water, flush the bad stuff out and keep drinking, keep hydrated. She rides horses, works out every day, cycles and looks amazing. I hate to drink water. I'm going to try and record it every day, use flavored electolyte packets, lemon water, and keep guzzling. I hate having to get up during the night to go, but if drinking is going to keep me from getting dehydrated or nauseous, then I've got to do it, especially since one of the meds are almost guaranteed to give you diarrhea. 

After the last drug bag had finished dripping into my system, they gave me a special one time drug application called Neulasta On Pro. They attach a monitored drug patch to your arm, and after 27 hours, it's calibrated to inject this bone marrow boosting drug into your arm for 45 minutes. After an hour, you then take the monitor patch off and place it in a baggie, and it will be properly disposed of at the next hospital chemo treatment. It can cause severe bone pain in the long bones (legs and arms), so I take Claritin for 7 days, which is supposed to help the histamine response to this drug. I will get this drug in addition to the chemo drugs every time I go.  In case the Claritin does not alleviate the pain, they will tell me something else to take with it.

By 4:30, the drugs had been administered, I had used the bathroom three times during the infusions (you just wheel your apparatus with you on battery power to the bathroom if you have to go) and was ready to go home. I was tired, but feeling good about my first time with chemo. I know that it gets harder on your body the more times you go, but for the first day, the staff was so warm and supportive, asking me all day long if I needed anything, taking time to chat personal things, sharing about their families in addition to asking about mine, that I felt so well cared for. It was truly a very wonderful experience. I'm not scared any more about going again, and feel I am in excellent care. it's a journey that nobody wants to be on, in a group that nobody really wants to be a part of, but you are not alone, and if you have a good medical team, that's half the battle. I hope you have family you can lean on as well....That's the other half, to have a loving supportive family member or friends you can lean on.

My family has been wonderful, both mine and Eldy's. They have sent loving, thoughtful, useful presents. My nephew and niece sent a generous Omaha steak package, my sister sent me a fleece/Sherpa hooded throw jacket....I love it! She says so I will feel hugged and loved, 'cuz she lives quite a distance....My sister's group of friends has been sending me well wishes and reminders to stay strong. My teacher friends and former co-workers have been reaching out to send blessings and well wishes.

Eldy's family has been checking in with me regularly, and remembers when I have big appointments, that is so sweet that people remember when things are happening, when they have their own busy lives to remember stuff! My best friend, Jeannie, from South Bend (friend for over 45 years!) checks in on my all the time....I even had someone in my Facebook support group whom I don't even know, send me seven chemo caps and a scarf out of the goodness of her heart). Such a generous, loving gift from a stranger. This kind of support has been HUGE to bolster my morale and spirits and help me feel not so alone. And of course, my daughter checks in on me almost daily, even though she is 1200 miles away, she is staying strong and watching out for me, too. So thank you, everyone for the well wishes and blessings. You are a blessing to me, and I hope I can return the good will to others who have helped me along the way.....I hope to pay it forward as much as I can in the coming days and months....