Monday I woke up at 3:40 AM and could not get back to sleep. When Robert woke up at 5 AM, I was ready to go. I had already checked and the gym opened at 5 AM. I knew Robert could not call the Imaging center to schedule his ultrasound until 7:30 AM. I put on some workout gear, grabbed my bag and went to the gym. Of course, my lock was broken. How does that happen already? Left the gym went to the grocery store, picked up a new lock, and went back to the gym. I worked out legs on the machines for 20 minutes before I went back into the locker room, changed into swim gear and hit the pool for 25 minutes. It felt good. At one point as the sun was rising and peaking through the windows at one end of the pool room, the water at the end of the pool closest to the windows turned gold. It quickly changed. I almost wished I had a camera with me so I could have taken a picture.
Once I was done, I headed back home and hit the shower while Robert called the Polak Imaging Pavilion to schedule that ultrasound the Urgent Care doctor ordered.
That call found us heading to the Polak Imaging Pavilion at Torrance Memorial so Robert could have his perineum examined with ultrasound. I missed the “Style Your Life” class offered that day at Cancer Support Community. Linda sent me a picture of her style board. I hope they offer the class again. The Polak Imaging center was squeezing Robert in, so they said to be there at 10:30 am and it could be over an hour wait. The wait was not that long considering.
He was called back for the imaging within 40 minutes after he was registered. He had a male technician, and of course we already had our jokes all lined up. The tech was not having any of it. He was very professional, while we were children, or at least teenagers, where everything is a candidate for a joke. As Robert lay on the exam table with nothing but a skimpy towel to cover his “bits” with, the tech came into the room and turned down the lights. I asked Robert if he wanted me to play Sade’s Smooth Operator as I had it on my phone. He declined….
The ultrasound was quick, with the tech advising he was able to get enough images. We tried to tell him that our primary care doctor needed to be copied in on the results. Three times we told him her name and spelled it out and three times he wrote it down incorrectly. We left wondering if Dr. Levee would be able to access the results of his imaging, and if this tech even knew what he was doing.
Monday is scale day for me at radiation. This time I remembered and wore “light” shoes. Every ounce counts dammit! I also had picked up a 3-Pack of reading glasses at +1.25 strength from Costco, as I am between contact prescription strength and the computer screen is just far enough away that it is no longer in focus for me. My Optometrist advised I do this months ago and I just kept forgetting. One of the radiation techs, Art, has complained from day one that his eyesight is not what is used to be and he has been having problems with fine print and cannot read my tattoos very well. I asked him about re-focusing, and yes, that too is an issue for him I told him that is how it starts; get some cheap readers to help him until it gets bad enough to seek out prescription glasses. Sometimes we even have to tell him what my tattoo says. One of the three pack I picked up was black, so I set those aside for Art. He was not there on Monday, so I held on to them for Tuesday.
Tuesday is Doctor Day. Not only for me at radiation therapy, but for Robert with our primary care – Dr. Levee. She is always open for a joke, but can also be serious when necessary. We joked and we talked about Robert’s ass… She said the ultrasound found a 5cm by 3cm encapsulated abscess. Since he was hurting more again after the initial relief provided by the first injection of antibiotics and oral antibiotic, she changed up his oral antibiotic prescription, and ordered another injection of an antibiotic. This time penicillin based antibiotics (injection and oral) and an oral cipro. She also asked her nurse to red flag an urgent referral to a Colo-rectal surgeon. From there we raced to Torrance Memorial for my radiation appointment.
It was also Linda’s first radiation therapy day. We both have Dr. Endicott. I wore a tattoo just for Art, and saw him before I went into the treatment room. I gave him the glasses. While I was getting treatment, Art was trying out the readers. He was AMAZED at how much it helped him. He came into the treatment room when I was done, so I let him see my tattoo then. He cracked up; he could even read what Hulk was saying! He was the one to take me to an exam room for doctor check up day, and he tried to give me the glasses back. Nope, told him those are for him. After he left me in an exam room, he went and got Robert from the front waiting room.
Dr. Endicott came in and looked at the boob. Yup, it is getting pinker, borderline red. They are at the point where the radiation is targeting more of my armpit, to make sure there are no cancer cells lurking in any other lymph nodes. My armpit is red. She asked about itching, and nope, none of that really. I have an occasional outbreak of itching, but hydrocortisone cream quits it quickly. She did admit that yes Linda did have her first treatment that morning. We talked about Linda being a nurse practitioner and teacher. I told her that so far everyone has acted as if they don’t know us when one of us talks about the other – HIPAA laws, we know. She indicated now that we have talked about each other enough the staff feels they can acknowledge our being there to the other once as we have confirmed enough info about each other they know we share information.
She also told me that despite all their best efforts to try to mutilate our skin with radiation, it always heals. She had us laughing! I told her I was going to quote her in my blog and she gave me permission. She said the redness would quickly heal, but deferred when I asked her about the pain. She couldn’t say when that would dissipate. I have also noted that the skin on my areola is changing. It’s somewhat leathery now. This is what I have to look forward to for my skin after radiation. It will no longer be as “elastic” as the skin on my left breast. She told me to keep using my creams and we parted ways.
From there we went to Costco to pick up Robert’s new antibiotics. Of course the prescriptions were not ready yet. We were told to wait 25 minutes. We found a display sofa and sat while we waited. At the appointed time we went back only to find out that they didn’t run the insurance on the costs. Go sit off to the side while they run the insurance, and finally we were ready to go. We got home just in time for me to slap a PB&J together, grab a “green” drink and my crocheting so I could head to Support Group. Robert declined to go once again, but it was understandable this week. He was in severe pain and just wanted to go take a nap.
Claire, one of the newer girls in our group, had Triple Negative BC 22 years ago. Last May she was diagnosed with ER/PR positive BC. Since she was over 60 and was tired of wearing bras, opted for a bilateral mastectomy. She’s happy as a clam and loves flashing her scars. She is a bundle of energy, love and joy. She came back to Support Group to spread laughter and love, not because she felt she needed help with dealing her latest diagnosis. She told me that after her radiation 22 years ago, as she aged and gained weight, her left boob stayed the same. It had changed from radiation, shrunk, was firmer, her skin somewhat leathery. However, her right boob continued to change over the years, grow with fat, but not her left boob. By the time she had her double mastectomy her right breast was twice as large as her left radiated breast. So there is that to think about now.
We had a new girl last night too. I did tell her that my first time in this Support Group they broke me. It was just too much for me that first week. But I also told her that I came back the next week and I am glad I did. Even though I was broken, overwhelmed, terrified, and just wanting someone to take it all away that first week, this support group has helped me with coping over the past year, helped me sort out my feelings, and helped me feel understood. Only someone else with breast cancer can really understand what you are going through. Yes, your family and friends love you, and will do anything for you, but they really don’t understand exactly what you are dealing with, the anxiety, the hurt, and the fear. They can empathize really well, but it’s not the same as someone who is in the same space as you. She had a notepad, she took notes, and she took all of us in and didn’t look like we had scared her. She is originally from Oakland, so it was nice to have a fellow Bay Area person. She recently moved down here. What luck, move from SF Bay Area to SoCal and you are diagnosed with Breast Cancer.
Today Robert was able to follow up on the urgent referral to the Colo-Rectal Surgeon. He was approved to go to the same surgical group where my Breast Surgeon works. He called and the earliest appointment available is Monday morning. The woman that helped schedule his appointment is also the one that follows up on cancelled appointments, so she is keeping Robert at the top of the list for any cancellations with any of their three surgeons that specialize in Colo-rectal issues.
I finished my grocery shopping this morning, and after radiation therapy today, cooked two dishes to eat the rest of this week and made some Baba Ghanoush for snacking with. I also roasted some radishes. I planned to make some Lemon Custard Cakes to serve with fresh fruit as a dessert, but I’m now too tired to make those. I also picked up Pita to make Sea Salt and Olive Oil Pita chips with for snacking with that Baba Ghanoush.
I still have the cakes, the pita and some homemade Ricotta to make tomorrow. Robert tried the Pasta with Beans and Greens I made, but didn’t care for it. I also made Cauliflower Agrodolce, which is basically a sweet and sour cauliflower dish. I find both very good! I don’t know what Robert’s problem is with the Pasta dish. I used an heirloom bean – Aduki. It’s a type of small red bean. I am finding it a lovely tasting bean.
At therapy today, Art was there and had his glasses ready. I loved that he was able to read today’s tattoo with no problems. I also noted that Benny who was working the other treatment room today, managed to make a trip into my treatment room so he could see today’s tattoo. I’m sorry Benny; it wasn’t as fun as some of the others. Art noted how red my breast is getting and asked if I was using the creams. Yup, religiously. He then asked me if I was itchy at all. Nope, no itching issues. For me the main side effect is pain. He asked if it was like burn pain. Nope, my pain is achy tissue pain. And the nipple irritation that feeds the achy tissue pain. I also noted last night that my rib where Blink used to ride over is very sore. I had some sharp stinging pains there last night, but only achy and sore there today. Tylenol is still working to take enough of the edge off so I can sleep. Last night I did have sweats so that my nightgown was wet. That was a first for me. I’ve been hot before and had some light perspiration, but I have not had a hot flash that made me sweat through my PJ’s since my Nane died.
When my Nane died, we were all there. Well, except my cousin who had already said her good-byes. She was 7.5 months pregnant with her boys, and trying to work and travel south to San Jose where our Nane lived and was going to die was just too much for her at that time. That last day Nane constantly complained of being hot. One of us had to be wiping her down with cool compresses all day long. At the very end she had pain in her gut and was hot. I was trying to massage her tummy to help with the pain and wipe her arms and shoulders with the cool compress. I wasn’t doing a good enough job as she would constantly turn to me and say “hot”. That night after she had passed, and the funeral home had taken her body away, my aunt, uncle and I went back to my mom’s house to all go to bed. My mom in her room, my uncle chose the sofa in the front room over the pull out trundle to sleep with his wife in the guest room, my aunt in the guest room on the day bed, and me in the office in the sofa pull out bed. That bed had an air mattress on it and at that time I always felt cold. That mattress never seemed to warm up for me, so I had a blanket under the sheets to help retain some of my body heat and be able to sleep comfortably. I was also using Invisalign braces.
Sometime after midnight, I woke up so HOT everything was dripping wet. I felt like even my teeth were sweating. As I woke, pulling my Invisalign braces off, and wanting to strip out of my PJ’s saying “Nane, I get it, you were hot, please make this stop!” I realized I couldn’t get naked because my uncle was sleeping on the sofa, but I did go into the kitchen and open the freezer to grab ice to fill my cup. It woke my uncle and he asked me what I was doing. I told him Nane was trying to demonstrate how hot she was on me and I now needed to crawl into the freezer to sleep. Thankfully I wasn’t that hot last night, but I was hot enough to sweat through my nightgown.
Robert is moving much better today with the second injection of antibiotics and the change up of his oral meds. So much so that after the roofers finished today and he went out to inspect the finished job he noted some holes in the back of the garage walls that he thought should be caulked. (Nothing the roofers should have done!) I could not believe he was out there thinking he could do this! The garage is a mess. So glad we put plastic down over most stuff. They warned us it would leave a huge mess in the garage. Time to break out the shop vac! Robert ended up taking a 2+ hour nap while I was cooking away in the kitchen.
Now that I have been sitting still for a bit, the fatigue is creeping up fast. Time for me to call it a night.
Life is staying one step ahead of the creeping sleep monster