Port #3, Colorado and Chemo

April 6, 2016
Hi Everyone,
It’s been a few weeks so thought I’d fill you in on what’s been going on. Many of you have written inquiring about my health and how I’m doing but it’s hard to do things with the kids, teach, rest, homeschool, go to appointments, and stop and get prescriptions as well as deal with the normal every day issues that come up in life like a broken sink, toilet overflowing, a kid waking up with a swollen eye from poison ivy right before he heads off for a week of leadership training and learning about the state legislative process. Things just seem to happen at the most inopportune times lately, but we have just learned that we need to go with the flow and adapt, adjust, and press on.
Around 10 days ago I was given lighter anesthesia to include Ketamine and Versed and I had my chemotherapy power port placed in my upper right chest near the clavicle but the line was threaded into my jugular vein in my neck. When I woke up I was sore and stiff yet I couldn’t really turn my neck all the way to my left. When I did, the vein distended and pulled awfully taut and I was quite limited in my ability to look beyond 180 degrees. I could turn fine to the right and look behind me without shifting or turning my whole body but I simply couldn’t do this on the left side. I thought it would soften or loosen up but it didn’t. We left the kids with my friends Melissa, Jen, and Cassie, and we flew to Denver on Easter Sunday so we could meet with the oncologist I’ll be seeing when we relocate to Denver in July. It was a long day with two flights and coming off the anesthesia but I seemed to do ok. We went with Jamie’s parents to my appointment and really liked this doctor. She physically works in the lab and studying cancer cells and running studies and tests, instructs medical students, and sees patients on Monday and Tuesday. I like that she has her hand in several components of cancer treatment.
She looked over my history and concurred with my oncologist here in KY. I’d be placed on Herceptin, Perjeta , and Taxotere. This would start immediately for six months and then after that, her recommendation is that I stay on the Perjeta and Herceptin for life. We were able to ask many questions and get answers and she was also willing to allow me to take many supplements. She even researched each of them with the database at Sloan Kettering and she told me what she wanted me to continue with and what I should stop. This was a new twist for me because I have yet to see a conventional doctor take an expressed interest in alternatives, but she was willing to do this and she followed through.
We flew back on Tuesday and my neck was still quite sore. I called the doctor’s office as I drove home from the airport and his staff told me that I should still go to the oncologists for me scheduled chemo appointment and he ‘d see me there since he was on call. I showed up and the oncology nurse of 23 years told me that the line in my neck was way too tight and he needed to go in and give it more slack. She called his office and was told he wouldn’t come see me since he had surgery that day. My oncologist looked at the site and got on the phone and pulled him out of surgery and from what I understand , they had a heated discussion on how he messed up on my line. The port was functional but it didn’t rest appropriately in my neck. She told me he needed to fix it and he was very stubborn and wasn’t going to come to the office, which was literally a mile away. All was not discouraging. One of the highlights was my friends Carol and Anne Marie, who were friends from their high school years in Elizabethtown, coming in to spend the afternoon with me. The time flew by and after being there for 6 hours I was so ready to leave. Another friend, Kasey, came and spent some time with me catching some sun in the parking lot while getting the last of my infusions. She drove me home but one of my meds at the drugstore wasn’t ready.
Thursday am I called the surgeons office and spoke with the hospital administrator and asked that the doctor on call be paged. She paged him twice and he still wouldn’t answer. I waited on the phone from 6:30-7:00 and my surgeon was the doctor on call. Frustrating!! I had an appointment with my alternative doctor in Indiana, who continued to emphasize what the Denver oncologist suggested by way of vitamins and supplements. We also stopped to get a wig at the James Brown Cancer Center. My friend, Stephanie, drove me up, and we were able to go upstairs taking a chance that I might pop in to see my surgeon who performed the double mastectomy back in July. He and his staff gave me hugs and welcomed me in immediately. He recognized that the port was functional but he said even if the doctor checked placement on the xray, that doctor failed to look at my neck and how bony it really is. He offered to fix it but it would have to wait the following week because all doctors it seems were and are now on spring break with their kids’ schedules. He also said he would have done it in another location.
I came home and called the office again and they told me to come in to see the surgeon and we’d talk. I went to his office and the staff told me that I was to go to the hospital instead. I had to stop at the oncologist’s office first to get my Neulasta shot, which boosts WBCs. This was a simple procedure. There was a ton of nurses, clinicians, secretaries, etc…leaving different messages about where and when I was supposed to be. I finally saw him and asked him why he wouldn’t call me but he never answered my question. He told me that he thought this problem would resolve and I told him I didn’t agree so right then and there I was prepped for surgery. I told him what my mastectomy surgery recommended and he realized that I had already sought another opinion about his work. I called Jamie, and luckily the kids were already with friends, and I had the procedure done. he was going to fix the side with the port but when I woke up I saw that plan B was in effect and he did what my mastectomy surgeon would have done. He was already gone and Jamie showed up as I was waking up. It was a pretty crazy Friday night.
As I was coming off the second round of anesthesia, I was also feeling the effects of my chemo meds to include the steroids, Benadryl, and Neulasta shot. On Sunday afternoon and Monday I felt the worst searing bone pain I ‘ve ever felt. I am normally up and about moving but this was debilitating. I simply felt like I had aged many years and could hardly move my hips . The pain was horrible through the tailbone and I couldn’t get comfortable no matter what position I attempted.
I still made myself walk as limiting as it was because I have a tendency toward blood clots and I didn’t want one more shot given. Yesterday was a marked improvement and today is better, but I still have the pressing tailbone pain and all the other symptoms now from the chemo. I have the mouth sores, mouth numbness, burning, and tingling. I also have all the stomach related upsets. and general malaise as I guess one would expect. For me this is very hard because it goes against everything healthy I’ve been doing and it’s also making me weak. I wanted to stay strong but I can see that it’s not easy. I’ve stayed on course with healthy eating, juicing, etc… but my appetite is down and food, including coffee, tastes very different. Food staples that are normally enjoyable , like garlic and lemon, hurt my mouth now.
Last night my neighbor Cassie took me to her hairdresser and he cut my hair with the clippers so I could send it off for a wig to be assembled. It wasn’t as hard as I thought it would be. Two clients waiting after me had both been through cancer treatment and they were very encouraging and happy to wait since it took longer than expected. We will send out the hair this weekend. In the meantime I have a short haircut because I found out that some people don’t lose all their hair on my particular regimen. If it starts falling out in clumps then I’ll have it shaved.
Jamie sent me a great quote from a book we’ve both read. “This is not some huge detour. This is the path God has for us and it leads somewhere good. It could even be our defining moment.” I think that captures where we are. We may never see the good or understand what God’s plan is or why but we know that He is God.
Having cancer is like having a full-time job. I wouldn’t wish this on anyone and I think Jamie is right when he says, so many women are helpful and accommodating because they have seen others go through this or they fear it will happen to them one day. The stats are not good—one in eight will have it. I never thought this would happen to me. When you see a friend or neighbor go through this it compels you to do something or anything just so you can get a glimpse into this trial and be near enough while not having to go through it yourself. I remember being in this position all too well three years ago when a friend, MB, battled breast cancer. I visited, prayed, brought some things to her house to do so she could scratch them off her bucket list, but deep down inside I never believed I would be in a similar spot. Those who have been through it have the right words and advice to share but it’s personal and unique. My experience is different from everyone else’s. So many have offered to help in many ways. I am very blessed to have many friends and neighbors and family reading out and helping.
Please know the reason I went into the surgeon fiasco was to show how time consuming and frustrating this process can be. Processes that are supposed to be simple aren’t always what they appear or are supposed to be. I’ve had three chemotherapy ports placed in seven months time. We are hoping the third is a success.
Please pardon me if I have not written or responded. I am inundated and I appreciate the letters and cards, calls, and texts and emails. It’s not personal if I fail to respond. Be persistent if you need to know something asap.