For those that like to read the end of the book first, the first infusion was relatively uneventful. Thank god!
The morning started early with my sister picking me up for an 8:30am appointment. Upon arrival, I was taken back to the infusion room with the nurse that would be overseeing my care that day. I had a bit of a meltdown when the nurse and I were not communicating effectively. I was trying to make her understand about my allergies and impress upon her the depth and breath, while she was trying to push me into a positive frame of mind. What she did not understand initially was I am positive I will get through this if everyone does not dismiss the allergies. My sister stepped in and helped get the message across.
The first meds they administered were pre-medications such as Tylenol, Benadryl and steroids. Since they gave it to me intravenously, it went straight to my head. I have never been that drunk in my life. And to think it was legal, I had a designated driver, and I could not do anything stupid that I might regret later (darn!). During the pre-med phase I started to have a bit of a swollen/thick throat, but luckily that diminished and went away. They then infused the Taxol first, then the Herceptin. All told we were there for 4 hours. I had no other allergic reaction and felt ok when we left.
Upon arriving home, my sister and I had lunch, and then I decided to go for a walk while I still had energy. My sister on the other hand decided it had been a rough day and choose a nap on the couch; woos.
There are some potential side effects that the nurse cautioned me about that I am trying to get ahead of. The first is constipation; I am augmenting my diet with a lot of fiber. For those that might struggle with this problem in their lives some foods that are very high in fiber that you may not know about are freshly ground flaxseeds, figs, broccoli, sweet potatoes, and of course prunes (prune juice more concentrated). The second side effect I desperately need to get in front of is potential neuropathy which is nerve pain in the extremities; fingers and toes. Neuropathy in my hands would stop my amateur career as a violinist in its tracks. I am reaching out to a local acupuncturist this week. There is evidence that acupuncture can prevent the onset during chemo therapy.
It is now two days after the first infusion, and I still feel ok. My sleep patterns are shifting to falling asleep earlier and waking up super early. It is great for talking to friends around the globe, but horrible for getting projects done. I think I am going to have to start getting up when I wake up. I am also still walking 3 – 4 miles a day. I will keep that up for as long as I retain energy. Who ever would like to join me let me know. Looking forward to week two and speeding through these twelves weeks uneventfully!
I may not have had an allergic reaction to the Benadryl and Prednisone combination, but the Prednisone has done some really weird things to me. It is now 4 days later and I still have headaches, still have an overwhelming urge to cry, and still very thirsty (80 oz. of water daily). Just today while walking in a store my vision narrowed and I thought I was going to faint, and this was right after I had eaten lunch. The thought of going tomorrow for my first infusion that would include another steroid had me just a bit worried.
Mother nature to the rescue, or thwarting my progress, take your pick. We are due to get upwards of a foot of snow tomorrow. The Doctor's office called and told me they were canceling the appointment and I will start next Tuesday March 27th. As frustrating as it is to wait to get started so I can finish, this might be a very good thing. It gives me a chance to get the Prednisone out of my system. Someone is looking out for me, so I am choosing to look on the bright side of this minor delay.
Now I get to stay all cozy on the couch with a fire in the fireplace tomorrow, and enjoy the snowstorm. For those of you in the northeast, stay warm and safe.
First, I must give a shout out to my Lion that was with me all day and night Friday. She was amazing and such a trooper.
Friday was the day the port was to go in. This is the mechanism that the infusions of chemo are administered. It started early at the hospital and the first step was talking to the Anesthesiologist and the Doctor that would perform the procedure. The first challenge was the antibiotics they wanted to administer that I had no experience – (potential for allergic reaction high). We went to the alternative, a central picc line that would ostensibly go the same place but would be outside the body. But I would not have to have antibiotics during the procedure. I opted for that option. Good thing too, read on.
The procedure went well, and we were out of the hospital by 1:15pm and home by 2:30 after making a stop for a few things. We hung out for a few hours and just talked. Then about 5pm went to dinner at a neighbor's. At 5:30 I started experiencing a swelling in my throat. It persisted all through dinner and beyond. When I lay down at 8pm, I started feeling a tingling sensation and decided to call the number I was given when discharged from the hospital. The recommendation was to go to the ER. We arrived at the ER and was taken immediately. After going through the procedures to register and provide information, the doctor examine me. It was determined it was likely an allergic reaction and recommended Benadryl and Prednisone to calm down the inflammation.
Miracles do happen! I did not have an allergic reaction to the Benadryl and Prednisone combination, and it started working within 12 minutes. They continued to monitor me for about 45 minutes and although the swelling did not go away, it was substantially relieved and clear that the drugs were working appropriately. They discharged me, and I started getting my clothes on. That was when I noticed red marks on my right breast. We had to get the Doctor back to make sure it was a rash and not signs of pending infection. All good, it was a rash and would go away as the Benadryl and Prednisone did its job. We got home at 1:30am.
My motto is Silver Linings this year. Some good came from this adventure; (1) By selecting the Picc Line I get a visiting nurse once a week to change the bandages and flush the appliance. This means there is another medical professional looking in on me every week. (2) I now know that the Benadryl and steroid combination will work for me without adverse effects. (3) If this does not put my medical team on notice that I need to be watched extra carefully, I am not sure what will.
My sister is going with me for the first infusion on Wednesday March 21st. She will be staying overnight as well. Depending on how things go, I may need to change some of the plans for the days of infusion. I may not be able to be alone. I may need to hang out with each lion (at a place of their choosing) and then have my sister come and stay overnight if she is not already able to come with me. Let’s hope this is the most excitement I have all year.
As you know from a previous post, I have considered using the Cold Cap to try to preserve my hair through the chemo. And as I learned it is a very complicated and labor-intensive process that requires someone with me for about 8 hours the days of treatment. I decided that the stress of making sure I had people not only willing to spend the time but be trained on how to properly change the Cold Cap every 20 minutes for 8 hours was to much. I am going to just let the chemo do its thing and hope that my think head of hair does not completely disappear.
But as you all know, I need to have a plan. The first was my sister bringing me some wonderful retro scarves from my Great Aunt. The next will be a trip to Reis’s market to try to find some cheap fun hats. And the last was a visit to the wig shop with my sister and a friend. Below are some pictures of some of the wig options. Can you guess which one I selected?
On this journey I have had the opportunity to talk to many different people. Some medical professionals that have taught me about the disease, but the most inspiring have been the many women that have been touched by breast cancer in their lives. From them I have learned much and been motivated to stay positive. Through these amazing women I have been introduced to three specific support groups: (1) Sharsheret, (2) Unite for Her, and (3) Cancer Support Community of Greater Philadelphia.
Sharsheret, a friend told me about. She had learned about them through work and thought it might be a good resource. Sharesheret is a non-profit that supports young Jewish women and provides a network of peers, health professionals to talk to you and other related resources. I have been amazed by the support. I was sent literature that was very informative, and a pillow that has been extremely helpful to keep my left arm positioned properly when I sleep. In addition, when ever I have reached out, there was someone to answer questions, and provide me guidance. A fun fact (not), 1 in 40 Ashkenazim Jewish women get breast cancer. I had no idea my risk was so high.
Unite for Her is a Delaware valley non-profit started in 2009 by Sue Weldon. She is a cancer survivor that struggled during her journey to find integrated therapies to complement western medicine in curing her cancer. I attended a wellness day last Friday and was blown away by the amount of support, education, and resources they have amassed for women with breast cancer. This year they will help over 1100 women. I learned so much at the wellness day; some which I knew and other things that are helping me find the proper vetted resources (acupuncture, massage, yoga, Reiki, and nutrition) much quicker.
In addition to all the integrative therapies, Unite for Her is providing me with an 8-week CSA share starting at the end of May. On Friday they gave me a sample of what the CSA share will be. OMG! So much food for one person. Get ready, I will be having evenings at my house to help me eat all the vegetables. No worries, I will cook what I need for the week, but what is left I want to share. This way, my Lions can also learn more about plant based eating and creative ways to cook vegetables. Maybe we can even find a chef to teach us a few tricks?!?!?
The final support group is Cancer Support Community of Greater Philadelphia, a choir friend introduced me to. She too is a cancer survivor and found the local chapter through her journey. I was invited to attend a monthly meeting just the other night. It was such a welcoming and fun group of women that make a point of not letting the disease become their life. The conversation ranged from catching up on news of everyone’s lives, talking about current medical challenges, as well as sharing tips and tricks I was grateful to learn before I start my treatments. One of which was that Beets are good for helping to cleans the liver. I guess I am going to have to find recipes for Beets that I can stomach. I hate beets.
I also received some good news this week. The genetic testing came back and none of the genes came back positive for cancer risk. This means that I do not need to consider other surgeries or treatments to eliminate/minimize the risk of getting colon cancer or ovarian cancer. Of course, this does not eliminate colonoscopies or other tests which we all should be getting. Have you scheduled yours?
Ok, I have been walking, what have you been doing?
I am determined to not only get healthier myself, but that all my friends and family members do to. I welcome anyone that would like to walk with me. I am tending to walk in the morning before 9 am or afternoon after 3 pm. If you would like to join me text or email me, and we can coordinate. The weather is getting nice, lets all get outside and walk. I love the company.
As anticipated last week was a busy one. I had several appointments and things scheduled to take care of in my life. I am so very relieved that I suspended my practice. I am not feeling so overwhelmed. I did decide to go to Jefferson Health Abington Rosenfeld Cancer Center for my Chemo and Radiation treatments. In the end I did not feel like a number with the Abington practice and the doctor really understands my allergy issue and is very tuned in and ready to adapt if it becomes necessary. I feel much calmer and ready for anything at Abington.
All that happened just before the storm came through on Friday. Of course, I lost power for 2.5 days. It was an adventure camping in my own home. I felt like I was back at Girl Scout camp on those cold mountain mornings. My house was 49 degrees. I slept with the down duvet and long johns and sweats, so I was toasty warm. The challenge was getting up in the morning and keeping devices powered up.
This week started with an appointment for blood work and some answers about the upcoming treatment schedule. The port goes in next week. My sister will be going with me. Then March 20th starts Chemo. It will be every Tuesday for 12 weeks, assuming all goes as planned. I have decided to NOT do the Cold Cap. After talking with several people and the nurses in the Chemo room, it is likely my hair will thin not be completely lost. It will be the summer, and fun hats and scarves will work very nicely. I will still need someone with me for treatment days. They will be giving me Benadryl which will most definitely make me sleepy/drunk, I should not be driving. For those that have expressed interest in helping, stay tuned for the signup genius once I get the schedule confirmed by the doctor’s office.
Now I am waiting for round two of nor’easters to come through. The snow has already started, and I am just keeping my fingers crossed I do not loose power again. I am prepared, I just do not want to ride it out in the dark cold house. I continue to lose weight, down 18 pounds, and walk every day. I am logging on average 50,000 steps a week. My goal is to be able to wear a bikini by 2019. Now do not get your hopes up, I probably will not wear one, just be a size where I do not embarrass myself.
Ok lions, your ask for this week: Does anyone know anything about generators? Mine seems to be leaking gas all over my garage floor. I need to figure out how to fix the leak and remove the gas smell from the garage (already put kitty litter odorant absorbing kind down).