I meant to update the blog this weekend but time slipped by. Anyway, I have more information to share now than I would have had this weekend.
First of all, I’m way less tired than I have been, and it’s mainly due to Jim and my mom taking over the night shift duties with Finn. I have slept 6+ hours consecutive and I feel way so much better!
Last week was tiring with the appointments. I think I left off with a plan for the week and the knowledge that my breast cancer is going to be treated as inflammatory breast cancer. This is an aggressive type of cancer and involves pretty potent chemotherapy, followed by surgery and radiation, and then endocrine therapy (since my cancer is sensitive to estrogen & progesterone). I didn’t have anything scheduled for Tuesday, which was great, so my mom, dad, and I hung out with Finn and dad and I got massages!
On Wednesday, I spent the afternoon at Duke with my mom, dad, and sister. You see, my mom had an aortic dissection back in October and she has made it through the rough period. Her doctors down in SC didn’t have a lot of good information to share with her and her new primary care physician recommended that she see the team at Duke. We spent a lot of time there, but at the end of the day, my mom got a good report. She had a lot of her restrictions removed from her and that’s a blessing because that means she can lift Finn. Since I can’t, I’m glad someone can lift him when Jim is at work.
I only had one activity scheduled for Thursday; insertion of my port-o-cath. I don’t know what I was expecting, but the resulting pain was way more than I expected. My sister took me to the hospital and hung out with me while I got my IV put in and waited for anesthesia to come get me. The procedure went well, I got 200 mcg fentanyl, 3 mg midazolam and 4 mg ondansetron, and I didn’t have any nausea. I had given up breastfeeding Finn the day before, so I was able to enjoy the peanut butter crackers they offered me in the recovery room. I didn’t have much pain in recovery but what a sensation to have a tube going into your jugular vein, let alone a plastic-type device in your chest. I’m finally getting used to it, but I think it’s going to take a while for me to not notice it.
Friday, on the other hand, was packed with appointments. First, I had to get an echo of my heart. I apparently got a newer ultrasound technician, so after he scanned me, his preceptor came in and reviewed the pictures and then did the scan again himself. My sister was getting worried about how long I was back there, but it all worked out and my ejection fraction is great! Then I had to get an ultrasound of my lymph nodes in the right axilla. Multiple physicians palpated and said they didn’t feel anything, but my oncologist wanted an ultrasound anyway. The radiologist was the same one who found my breast tumors, and at the end of the scan she told me that some of my lymph nodes look not “perfect” and so I need a biopsy of one. We scheduled that for this Monday (yesterday). I had a little bit of a cry after that, because I really wanted NO lymph node involvement, but she explained it could be due to stress, etc. My last stop for Friday was with the Pharmacist! I actually met with the oncology pharmacist for the clinic, as well as a PGY2 pharmacy resident. My med reconciliation was very easy to do… a couple vitamins and a probiotic. Then they want over what my chemotherapy regimen will be. It looks like I’ll be getting every 2 week chemotherapy, only one day a week, though I have to come in the next day to get my Neulasta. The first four rounds of chemotherapy are doxorubicin and cyclophosphamide, the second four rounds are taxol. I will probably start losing my hair about two weeks into therapy. They went over all the premedications and the prescriptions I will be having for the 4 days post chemotherapy at home. I’m going to be on a “highly emetogenic” regimen so I’m prepared to feel like shit for a while, but I can deal with that if it kills the cancer cells. Supposedly, the first couple days after chemo should be ok because I’m on steroids (yay!) but when that stops is when I will feel crummy. The pharmacist told me it should only last a few days and then I will have another few days of feeling good before my next round of chemo, so let’s home that works for me. She also told me that there are studies that doing yoga while undergoing chemotherapy has a 50% reduction in feeling crappy. I had already planned on doing that, I’m starting once I am allowed to have full range of motion again after port placement, and my sister brought up several books she had from her yoga certification course, so I’m prepared!
On Saturday, my mom, sister, and I did a little shopping while Jim spent the morning with Finn. We also checked out a new Vietnamese restaurant for dinner. It was tasty, though not as good as Vietnam Restaurant in Philly, and we had a good time. I also joined a facebook support group for inflammatory breast cancer. I don’t regret joining, especially since I learned of some women who have survived over 20 years, but I definitely had a racing mind all night and I just couldn’t sleep well. After getting up and eating breakfast on Sunday morning, I went back to bed and slept another 3.5-4 hours. It was heavenly. We ended up just totally relaxing on Sunday, my mom even took a 4 hour nap as well.
So, Monday was the day of the biopsy. They were running a little late so I didn’t get taken back until about 11:45 for my 11 appointment. I had a different diagnostic radiologist this time and he did a good job. It required a lot more lidocaine to numb since they went to a deep lymph node (FYI my breast tumors are close to the skin) and they proceeded to take little punches of the lymph node. I agreed to participate in the research study again so they took an extra punch for the study. At the end, he told me that he would call me when the pathology report came back but it would probably be Wednesday afternoon. He told me that it is most likely the same pathology as my breast cancer, to which I replied, “I’m still hoping that it’s just stress!” He then said that it’s a pretty large lymph node, but maybe I have a little subclinical infection that is causing it to be enlarged. I think that’s probably not the case. To be honest, it’s not shocking if I do have a couple lymph nodes that have cancer in them. Most people with this type of cancer have at least a couple lymph nodes with cancer in them. I was just a little sad.
On Monday, I also got a call to tell me that my PET scan was not approved by my insurance company yet. After multiple calls to my oncologist office, the nurse practitioner called me back in the evening to let me know that despite the oncologist petitioning my case for a PET scan my insurance has denied it. So, now I have to get CT scan of my chest, abdomen and pelvis PLUS a bone scan. That’s what I did this morning. There was a bit of a drama before all the scanning got started. I showed up before 8 o’clock, like I was instructed to do last night, and expected that my CT scans were going to take place. Unfortunately, they had not been scheduled because they were ordered so late in the day yesterday. I have to thank the triage nurse and the scheduler for the breast cancer clinic for getting me added on this morning and also getting the bone scan scheduled for today too! The only time I cried was when I was trying to check in for my CT scans, but they couldn’t check me in because they were still scheduling me for the bone scan and the clerk couldn’t access my record in EPIC. To be honest, he wasn’t the friendliest person in the world, but I also hadn’t eaten since 7 pm Monday night and I was stressed about trying to get my scans done ASAP so I can get my final staging and get this chemotherapy party started. I finally just sat down and started to cry. A wonderful radiology technician, Marie, came over to me and gave me some peanut butter crackers, apple juice and a shoulder squeeze. I started to feel better. When I got taken back to my room to get prepped, she was my technician and proceeded to witness to me and to get me in a much better place, mentally and emotionally. I think I love her.
After my IV got inserted, no one wanted to use my port yet because it’s still healing, the nuclear medicine technician came in an injected me with the technician 99 radioisotope. Jim joked that I’ll develop superhero powers… I hope so!! It wasn’t much longer after that that I got taken back for my CT scan. It was pretty quick. After they did the one without contrast, they infused the IV contrast which gave me a warming sensation that does make you feel like you peed your pants! That scan was pretty quick too and then I was back in my room. Marie had got me an ice pack (since my biopsy site was hurting a lot) and another cup of apple juice. I gave her a big bear hug because she just made my day.
Since I was allowed to eat and drink, and I had about 1.5 hours to kill before getting my bone scan, Jim and I went to the food court to get brunch. Then we walked over to the campus bookstore and I got a book about baby yoga & massage, plus a couple new pens. Then I went and got my bone scan done.
So now, we wait. Thursday I have blood work done before my visit with the oncologist. The pharmacist seemed to think that I might be starting chemotherapy this week, possibly Thursday afternoon, but if not then I’ll definitely be starting next week. We just need to get the staging to see if anything changes. Right now, I’m stage 3 and I hope to stay that way.