Chemo: The Rest of Session One, with pictures
Briefly, my chemo treatments will be in four doses, called infusions, administered three weeks apart. The first was on June 28 (followed by July 19, August 9 and 30.) My last blog post was about the first 10 days of session one. I have now completed the full 21 days.
As predicted, my energy level hit its lowest point on days 10-12. I had experienced some soreness in my mouth, which I treated with salt water. That lasted about nine days, ending on day 14. There was some irregularity which I treated with either Imodium or Dulcolax, whichever was appropriate.
The bouts of Atrial Fibrillation I talked about in the last post quit on day 12 and my energy level began to rise. At physical therapy on day 13 my therapist told me my range of motion was good enough that she would encourage me to go back to Curves for strengthening exercises. That felt like being given a prescription to “RESUME LIFE.” I went the next morning and it felt so good. I only did one round on all the machines and had no problems with any of them. I repeated that again on day 17.
On day 14 I had an appointment at Just Like A Woman to pick up my “New Boobs” and be fitted for a bra, which has pockets to hold them. For whatever it is worth, I had decided to go down in size, although I can be any size I want to be. The hard part was finding a bra that didn’t cut too tightly into my armpits. Since my insurance company will pay for two sets of forms every two years, and three bras a year, I got two sets of forms, one being the sports type that I can use in the pool, etc. I went home with one bra and one on order. I can’t explain how much better and “normal” I feel while wearing them.
Also, on day 14, my hair started coming out as I was washing it. This continued to happen each day, and more cane out when I combed it. I knew then that I would not make it to the family wedding on day 18 with my own hair, so I made an appointment with my hairdresser, Pam, to have it buzzed off (not shaved as that runs the risk of ingrown hairs.)
Paul’s sister and brother-in-law were in town for the wedding on Saturday. Mary offered to go with me when I got my hair cut, which was very sweet and much appreciated. We turned it into a fun event. Pam suggested a Mohawk before it was all gone. She spiked it up and put green streaks in it for a picture. A friend later said I looked like “Every middle-school kid’s dream teacher.” My new wig was deemed good to go and my new scarves looked good, so I left a happy person, ready for my evening debut at that evening’s Condo Happy Hour and the wedding the next night. What could have been an emotional “downer” wasn’t!!!!!
My energy level continued to be good right up to my second cycle infusion. I did have to pay attention to how many things I tried to do in one day, and budget my energy with some rest periods along the way.
All in all, I have been exceedingly pleased with how the whole session/cycle one has gone. I fully realize that all this will be somewhat accumulative and that each of the next three cycles may have more symptoms develop.
My second session was July 19, and everything went smoothly. I even went to Curves the next morning, but have to admit to more fatigue. The Physician’s Assistant I saw reviewed how everything had gone the first three weeks, which was normal, and we discussed more possible side effects that could come on after this session; none too daunting. Mainly the pattern will repeat, and I have kept good notes.
My motto is still “No Regrets,” which is also my favorite aria sung here by Edith Piaf in English. A neighbor found this other version which you won’t want to miss.
https://youtu.be/qxYpQ-jMe44 (embedded below)
My next post will be after session 2, around August 9.
Chemo: Session/Cycle One of Four
I left off the last post having made a decision to go ahead with chemo because it would decrease my risk of a reoccurrence of the breast cancer by a few percentage points. I learned that the chemo formula for my Estrogen Receptor Positive (ER+) type of cancer (with only one lymph node involved) would be two drugs: Taxotere and Cyclophosphamide, known as TC. They are not as toxic as others and should not affect my heart at all.
Since I am only getting four infusions, each three weeks apart, they are not putting in any kind of a port. The day before my first infusion, I packaged up lunch, entertainment, snacks, etc. and had everything ready to go. I must have been more stressed than I realized, however, because my heart decided to go into Atrial Fibrilation again. I waited a couple of hours and then called both the oncologist’s office and my cardiologist. This was mainly to report in that it was happening. As always, it corrected overnight and I was good to go the next day. In preparation for the infusion, I was prescribed Dexamethasone, a steroid that counters some of the effects of the chemo and also suppresses nausea. I take it the day before, the day of, and the day after. Insomnia is a side effect, but that only lasted three nights.
June 28, Session 1:
I was to arrive at 11:00 to check in and have my blood drawn and tested. They want to know that all levels are acceptable. In the infusion room, I got to pick from several recliner-like chairs where I would spend my time that afternoon in full view of my nurse. Unfortunately, it took two tries and two people to get a good IV set, which was used for both the blood draw and the infusion. I have difficult veins. While waiting for the blood work results to come back from the lab we met with Dr. Acheson.
I need to say right here that my friend Melanie was with us the entire time. She has been a god-send as she takes great notes, and I can read them afterward.
The doctor shared more information and answered questions. When my blood work results were back she went over them as well. Turns out my white blood count was high, potassium, magnesium and sodium were low. None of that would hinder treatment, but I may need to make some diet changes. From there we went back to the infusion room. It is a large sunny room with many windows and a snack bar. I was given an anti-nausea medication and had to wait a half hour before the infusion could start. By then I was getting hungry and ate part of my cheese sandwich. Lunch for Paul and Melanie would have to wait. Nurse Liz came over and shared a bunch more information about the side effects I could expect, how to deal with them, etc., etc., etc. I was then hooked up to the first chemical (T). Then I sent Melanie and Paul off to the cafeteria to get their lunch.
I had just set up my iPad to watch the movie “Turner and Hooch” when Matt, the pharmacist, came in to discuss all the medications. Fortunately, Melanie and Paul came back because I was having a hard time taking notes in a readable manner. Matt went over the anti-nausea medications that I picked up at the pharmacy a couple days before: Compazine and Zofran. The staff absolutely does NOT want me to get sick. There are also other over the counter medications we can use to control either diarrhea or constipation. They don’t want either of these to get out of control. All Paul and I had to do when we got home was pull out our travel kit for Imodium and Dulcolax - things we routinely carry on our travels.
By 3:30 the last of the two chemo bags was empty, my IV was taken out, and I was released to go home. I felt fine. At home I had to take the steroid for one more day and it was recommended that I take Compazine for a couple days, just to be sure I didn’t get nauseous.
Symptoms and the 21-day Cycle:
I was told to keep track of all my symptoms over the following 21 days, because the pattern that developed would probably be repeated for all the cycles. Day 1 is the infusion day, which in my case will be on Wednesdays. I have printed out a “Weekly” calendar with times running down in columns. I am color-coding my medications and symptoms so I can see them at-a-glance.
Possible Symptoms to watch for:
1. Low blood: assessed on day of infusion.
2, Fever: none
3. Nausea and vomiting: some unsettled stomach issues and took med. No vomiting.
4. Constipation and diarrhea: all controlled with occasional medication like Imodium or Dulcolax - depending on which one was needed.
5. Changes in appetite and taste: somewhat less appetite, everything still tastes good
6. Changes in mouth: slightly sore mouth, mostly when I get up in morning, handled with salt water wash and/or gargle
7. Changes to hair, skin and nails: no hair loss, no skin issues, fingernails are tender and sensitive to extra warm temperature
8. Fatigue: worst days were 4-6 and 10. Energy level should go up now after day 10 until day 21 and the cycle repeats.
That is how it breaks out for the first 10 days of the 21 day cycle.
If you know me, however, I like to plan ahead. So, I took advantage of checking out the free wig selection at the “Transitions” department, which St. Vincent has, and was able to find one that my hair dresser says is a great fit and color for me. The style is not that different from my own. Today, my cousin brought over her collection of scarves, hats, etc. from when she had breast cancer six years ago. With all of that in hand for a start, I’m hoping to be ready for any social event and about-the-house when/if my hair comes out. Hair loss will probably start sometime before my next cycle, but for sure after the next infusion.
I’ll try to let you know how the final 14 days of this cycle go in the next post. Check back in two weeks.
Living with AFib:
As an aside, you probably noticed that I keep referring to my heart going into AFib. I was asked how I can tell? Usually, the first thing I notice is that my heart is pounding noticeably in my chest. When I sense this, I use test #2 and have my Apple Watch take my pulse, which is an app I have readily available on it. Since my normal resting rate is somewhere in the 60s or low 70s, if it is bouncing around between the 80s and 110 bpm (sometimes as high as 134), I have a pretty good idea I am in AFib. Then there is test #3. This is to use a little EKG recorder a friend told my about. It is made by Kardia and I got it on Amazon for $99. It pairs with an App by the same name that I have on my iPhone. It has two metal plates onto which I place fingers from each hand. They connect over bluetooth and it takes a 30 seconds reading. I then email the results to myself as a PDF and print it out. When I asked my cardiologist, he said that a lot of his patients have them, and he totally approved. I can show a doctor the rhythm printout taken while the event is happening. What I am realizing, however, is that my heart probably goes in and out of AFib more often than I realize, which makes my very happy that I am on Eliquis blood thinner to avoid the clots/stokes that can be generated when your heart functions irregularly. My cardiologists are just trying to get me through all this cancer stuff, then will deal with my other heart issues. I know I’m eventually looking at a pacemaker, but not now. I have two cardiologists watching over me. If you, or any of your friends or relatives have issues with AFib, check this out: Alivecor and have them consult their cardiologist to see if it is right for them. https://www.alivecor.com.
That is it for a couple of weeks. I am remaining positive and looking forward to the next 14 days with more energy. Paul's sister and brother-in-law are due to arrive on July 15 for over a week. We all have a family wedding we are looking forward to attending.
Please feel free to leave a comment. I do get them and read them. ;-) I love hearing from my friends via e-mail, text, or phone.
Next infusions are July 19, August 9, and August 30.
Decisions, Decisions, Decisions - Ugh
In my last post I covered my surgery - a bilateral (double) mastectomy which I call a quadruple mastectomy because it included the axillary ectopic breast tissue in each armpit. My recovery went smoothly and I regained strength every day, and I continue to work on range of motion. Many areas are still numb, and may be for a long time.
Now on to the "Treatment" phase. Dr. Ulloth had recommended radiation because there were so many (4) tumors in my right breast and the lymph node with a spot that had broken open was on the right side. On June 13 I met with my radiation oncologist, Dr. Christine Cha. It turned out she was very familiar with me because she was on the Breast Board when Dr. Ulloth presented my case. She very methodically went over all the reasons why I would benefit from having the radiation treatment on the right side, and that it would not affect my heart. There would be 25 sessions scheduled five days a week for five weeks. The actual radiation would only be about a minute, with getting ready and getting back dressed would make it about 15 minutes. This, of course, would take place after chemo, if I would be having that.
For all of our doctors' appointments we have been taking our good friend Melanie to act as a "scribe." There is just too much information contained in the discussions to be able to try to take notes ourselves. I always go into an appointment with a list of questions. She makes sure we have covered all of those, but there are many other things in the rapid conversations with the doctor that could get forgotten or miss-remembered if it wasn't for her excellent notes. I highly recommend taking a scribe with you if you are having these kinds of doctor's appointments.
On June 21 we met with my medical oncologist, Dr. Anupama Kurup Acheson. She was delightful and full of all kinds of information. She will manage several stages of treatment, chemo if I have it and the hormone treatment for years. Eventually we got to the results of that Oncotype DX test that would determine the need for chemo or not. As I had dreaded, the results were not clean. My score came in at 27 on a scale to 50. Right in the middle. UGH! Now I would have to make a decision. The risk of reoccurrence was 16% when only using the hormone suppressing medication like tamoxifen or aromatase. It would to down to 13% if I did chemotherapy.
Making this decision would be hard, but when I learned what would be involved it didn't sound so horrible. There would be only two chemicals that would not affect my heart. There would be only four infusion sessions three weeks apart. I would get all kinds of anti-nausea meds, and one of the main side effects would be fatigue. I should be able to feel pretty good for half the time between session. Since the outcome of this test was what I had been dreading, having to make the decision, I had already done the worrying. If it will increase my odds of long term survival, I was willing to go for it. Paul, Melanie and I talked about it. The last question I had for Dr. Acheson was "What would you recommend your mother do if she was in my position." Her response was "Try it at least once." That gave me the feeling that there would be an out if needed. I appreciated that response. Also, when I told her I had gone from "Interesting" to "Complicated" and was going to use the word "Complex" for this next stage, she looked me straight in the eye and said, "You are a very nice person, but you aren't that special. You are right there with what we do every day." I guess that was quite a relief as well.
On the way out I scheduled the first three sessions and then was shown the infusion room where I would come four times. There were comfortable recliners and a snack area with lots of things to eat and drink. I could have someone with me and bring in food and my own entertainment. Doable.
Once home, I read through the chemo section of the books I've been using as references:
Just Get Me Through This! A Practical Guide to Coping with Breast Cancer by Deborah A. Cohen and Robert M. Gelfand, MD and
Dr Susan Love's Breast Book by Susan M. Love, MD, Sixth Edition 2015.
Of course I had many more questions, and called the doctor's office to get them answered. The triage nurse, Holly, called me back and spent time answering them all. Then she put me in touch with the nurse navigator, Julie. She was very helpful and had lots more information and tips. I'm feeling much better about the decision.
So, I'm set for the next phase of my recovery; chemotherapy. My infusion dates will be June 28, July 19, August 9 and 30. Radiation will follow after a few weeks recovery.
In the mean time, since I have chosen to not do reconstruction, I need to so something to make me still look a bit more feminine. My friend Melanie and I went "Boob and Bra" shopping the other day. I will eventually find just the right combination and the sales lady was an excellent fitter. She has ordered some things that should work perfectly for me.
All of this goes together with my theme or motto that I want to look back, in the future and say I have "No Regrets." It turns out that my favorite aria sung by Edith Piaf is "No Regrets."
Listen to this beautiful auria. English Version
Surgeries, Pathology and Recovery
My last post left off with my surgery scheduled for May 10, 2017. It was to be a double mastectomy and also removal of the ectopic breast tissue on both sides. The afternoon before surgery I went to the hospital to have the dye injected into both breasts which would allow the lymph nodes' locations to show up during surgery.
May 10 I checked in at St. Vincent Hospital at 5:00 am and it wasn't long before I was taken back to the "Short Stay" surgery area and given a small room just large enough for the bed and a chair. There were many things done to prep me for surgery. I was also visited by the anesthesiologist, Dr. Ghode and by my surgeon, Dr. Ulloth. We discussed what she would be doing during surgery and she then had me sit up so she could use her permanent marker pen to draw the areas where she would make incisions and the sections she would be removing.
At 7:30 am I was wheeled out to surgery. It took about 5 1//2 hours and at that time, while I was in recovery, Dr. Ulloth went out to tell Paul (and Alberto who had come to sit with Paul) that all had gone well and the lymph nodes were negative. That was a huge sigh of relief. It did not take long before I was out of recovery and back to the small room where I would spend the night. I tolerated the anesthesia and the pain meds I was receiving and did not get sick at any time. This sped up my recovery and I felt lucid and conversational very quickly. Because I had been advised not to be a hero, I took the pain medications when they were offered, which included both oxicodone and Tylonol every three to four hours. The night went well and I slept, using my own CPAP machine.
The second day I enjoyed breakfast and lunch while waiting for the doctor to come by in the early afternoon and give approve my discharge. Back home I went directly upstairs to our family room where the big leather recliner is located. This would be my "bed" for some time to come, until I can use my arms well enough and can sleep on my side. I continued on the heavy medication regiment for almost a week.
Six days after surgery, May 16, I saw Dr. Ulloth to have the bandages removed and the drain tubes taken out. Since the pathology report had not yet been posted, she made phone calls and talked to the pathologist. That is when I went from "Interesting" to "Complicated." That word kept coming into the conversation. It turned out that the one lymph node she had removed on my right side had in fact a malignant spot on it, which had broken open. At that time we all agreed that she had to go back in to get more nodes to make sure nothing had spread farther down the line. The next surgery was scheduled for the following Wednesday, May 24 when she would go back in through the same incision in my right armpit.
Surgery number 2 took place May 24, again in the first time slot of 7:30 am. For this one, my friend, Melanie, was back in town to be with Paul. I was only in surgery a little over an hour and it went well, again. By noon I was in the car and we were heading home. This time I only took a few heavy pain meds for a couple of days, then Tylenol for a couple more. Through all of this, the only parts that hurt were the incisions across my armpits. The original one on my left side continues to bother the most. I was assured that with time that would improve.
When I had the single drain tube from the second surgery taken out during an office visit on May 30, the pathology report had not been finished on those last nodes. Everything else was looking good. I made my final visit appointment for June 5. After she had inspected everything and removed the last lingering seri-strips Paul finally asked the big question. What was the result of the pathology report. ALL OF THE NODES HAD BEEN NEGATIVE!!! There was an audible sigh of relief from all of us.
One last test was ordered. It is the Oncotype DX test which looks at 21 different possible gene mutations for my type of cancer, the Estrogen Responsive Positive, all others negative. The score from this test has a high ability to predict risk of re-occurrence and whether or not chemotherapy will be helpful or not. This test will take about two weeks.
We said a final farewell to Dr. Ulloth and wished her well on her upcoming African Safari and retirement. I have appointments made with Dr. Christine Cha, a radiation oncologist; Dr. Acheson, a medical oncologist; and Jennifer Batchelor for a physical therapy assessment.
Grace's Journey with Breast Cancer: The Beginning
From time to time, I will update you on my progress in dealing with the diagnosis and treatment of breast cancer. I'm trying out this method of keeping in touch and sharing my journey.
In February, while we were in Cuba on our second trip with Grand Circle Foundation, I discovered a lump in my armpit while washing off soap in the shower. This was of concern to me, but I didn't say anything about it at the time. It took me a little while to process the discovery and to decide what to do. Since we were staying at our place in Green Valley, AZ at the time, and not at home, it was more complicated. I finally decided I really needed to have it looked at. This proved to be a very wise decision.
I was not able to get in to see a doctor in a timely manor, so I settled for John, the nurse practitioner. I wanted to be seen by someone as soon as possible. That appointment was March 3, and he was very thorough in examining me and consulting with a doctor in the office. The recommendations, and orders, were for a chest X-Ray and an ultrasound. I got the X-Ray that afternoon, but the ultrasound could not be scheduled until they received the actual CD of my previous mammograms from Portland. Those must have been sent by snail mail because it took a week.
The ultrasound got scheduled for Friday, March 17. The lovely nurse, Lisa, who walked me through everything that day, indicated that because my last mammogram was over six months old, they wanted a new one. I opted for the 3D one even though it "might" cost me more. That was done, and the radiologist read it quickly, then only ordered an ultrasound for the lump in my armpit. After that was done, checked and redone, the person looking at those results ordered the lump to be biopsied. Again, nurse Lisa took over, got insurance permission and arranged for the scheduler to contact me that same day. She was amazing. And yes, the scheduler did contact me and the biopsy was scheduled for the following Wednesday morning, March 22, at St. Mary's Imaging Center in Tucson, next to the hospital.
The biopsy procedure was interesting as it was ultrasound guided, and the needle was "spring loaded" so it shot like an arrow into the little lump with quite a loud clicking sound. I got to watch the whole procedure on the ultrasound screen. It didn't take long, and we were soon headed back to Green Valley with instructions not to lift anything heavier than a milk carton for three days.
As an aside here, Wednesday, March 22 was the day the Multi-Media group I belong to at the Green Valley Camera Club was to set up for a major interview shoot the next day. I was the producer and director on the project, but all the guys, and gal were very helpful and did the heavy lifting for me. This involved furniture, lighting equipment, sound equipment, the green-screen backdrop and three cameras. Three hours later we were ready for the next morning. The Thursday morning interview taping went well, after setup changes, camera and sound checks, and about an hour interviewing three members of the club. Everyone pitched in to put the room back to its original condition before leaving, about 1:00.
During the above described shoot, on March 23, a message came in from John that he would like to see me at 4:00. Paul and I want to that appointment at which time he told me that the initial results of the biopsy came back positive for "invasive carcinoma with lobular features" in ectopic breast tissue. No lymph node tissue was identified. At this point I think we both just sat there for a short time to process this, then began to ask questions.
We were scheduled to leave March 25 for an Expedition Cruise to Baja, California on Lindblad's National Geographic Sea Lion for two weeks. What should we do??? John assured us that the final pathology results would take about 10 days, so by all means GO ON THE TRIP. When we got back to the house I was able to change our flights back to Portland from April 25 to April 12. On Friday, I was able to make appointments with my primary care doctor and with the surgeon I really like when a friend was using her for breast surgery. Those appointments were for the two days after our arrival back in Portland. Then, we closed up the place and left for LA and on to La Paz to join our friends on the cruise in search of marine mammals and a possible chance to pet the grey whales, again. The trip was a great diversion, and just what I needed at that time.
Back in Green Valley I saw John one more time where he reported that the pathology results were in. The lump was: Estrogen Receptor Positive, Progesterone Receptor Negative, HER-2 Negative, and Ki-67 Proliferative index was Borderline (15%). If one has to have breast cancer, this seemed like a good pathology report. but there are still too many unknowns.
We returned to Portland on April 12, and both doctors had received the test results from Arizona, and we started on the next steps to figure out what all needed to be done. The MRI had already been scheduled, so I had that on April 18th. On April 19 I met with the Genetics Counselor at Providence for an assessment of my risk factors due to extensive family history. I qualified for the testing, and some of my blood was sent off for DNA testing for nine different genetic mutations they know can lead to a high risk of breast cancer. Eventually these tests all came back negative, which was a relief, as any would have impacted my treatment.
The results of the MRI weren't so good. It showed two suspicious areas on my right breast. The lump was in my left armpit. Ugh wasn't exactly what I said at that time. In order to do a biopsy of those areas they first had to do an ultrasound to see if they could find them for doing an ultrasound-guided biopsy. Fortunately both areas could be seen, so we proceeded to the ultrasound-guided biopsies on Thursday, April 27.
Again, as a diversion, I left Friday morning for Medford to participate in our state Delta Kappa Gamma convention where I was to do a workshop on iPhone Photography. The trip was a success and my workshop was well attended. While at the Sunday brunch I looked at an email message link to "My Chart" where my doctor had posted the initial pathology report of the two right breast biopsies. They were both positive, and this calls for a bilateral (double) mastectomy. Again, I needed a little time to process this. Actually finding out then was not a bad thing as I could share the new with a few of my friends and supporters before heading home.
Monday morning, May 1, I received a phone call from my surgeon, Dr. Ulloth, while I was in Costco. She shared with me the results and we set a date for the surgery; Wednesday, May 10. I had an appointment already set to see her on Thursday, May 4 for the final discussion, questions, etc. She has me scheduled for the first time slot, so I'm to arrive at the hospital at 5:30 am for the 7:30 surgery. She also has arranged for me to go in the afternoon before for the radioactive dye to be injected into both breasts, so that the lymph nodes will be lit up and can be found during surgery.
All plans are going right along and the pre surgery interview and instructions are done. Not it is a matter of making sure the house is ready, etc. Meanwhile, I have another presentation on iPhone Photography to make to my DKG chapter Monday night.