I realized on Monday that I was hiding how tired I am from Robert. I had fallen into one of my micro naps while reading the book Facing Forward: Life After Cancer Treatment. I heard Robert’s office door open and could feel myself saying “wake up, wake up!” I was finally able to lift my head and acknowledge Robert before he suspected I had been napping. I do not know why I feel like I need to hide how tired I am from him.
Monday was my follow up with Dr. Endicott. She likes how my skin is clearing, explained how the internal damage will still take much longer to heal. The achy feeling I have from radiation treatment may take as long as a year or more to dissipate. The ache has decreased, but it still is there and flares to a more acute pain depending on how active I have been.
After my appointment on Monday morning, I attended a two-month follow up session to the Artist’s Way course I took through the Cancer Support Community. It was nice to meet up with the group again. We all created a bond, a sacred circle, and checking in with each other was motivating to keep up with the lessons we learned in this course but also heartening to hear how everyone is moving in such positive directions.
Yesterday was Robert’s follow up with the urologist and we stopped in at the lab for my blood draw prior to next week’s appointment with my oncologist. I also threw in a waxing appointment, as suddenly my legs were super hairy again. One day it is just a few sparse hairs on my legs, and then overnight it is as if a bush grew. I still do not have any new razors in the house to shave with, so waxing again it was. I actually fell asleep during my waxing session. I did not realize that was possible, but yes, I made that happen. Yesterday was also Support Group night, and prior to Support Group was a Puppy Party. It was for the kids, but adults were welcome. Kelly and me from our group went and took a turn in with the puppies. There were two actual puppies, the rest were just small dogs. Nevertheless, it was nice that a little Malpoo just dropped himself into my lap at one point. He was exhausted from playing with the kids. He brought me a toy, crawled right into my lap, and hid there. Kelly had fun with a couple dachshunds.
Maryka was back at group last night. Since she moved to Long Beach a few months ago, she only comes once every four to six weeks now. Anne had Maryka talk first, and then Maryka picked me to talk next. I confessed that I am still tired, I have my MRI today, but not too worried about it, just some mild anxiety. I also confessed that I have been hiding how tired I am from Robert and I do not know why. Just as he is not allowed to see me naked, I hide how tired I get from him. I told them how overwhelmed I feel about trying to get myself back into a routine so I can go back to work. I really want to go back to work and just as Dr. Ali-Jones predicted, I do not think I will be ready to get back by October 8th as I was hoping. The tears started of course, and all my fears and anxiety came out. Anne asked me why I feel like I need to hide this from Robert.
Maybe it is because I have disrupted his days for a year now. He runs his own business from home and I have interrupted his normal routines. He has had to accommodate me being home all day, a lump on the couch most of the time for that year. I know he would like his days back without having to work around me and all the damn doctors/treatment appointments. I guess I am tired of feeling like a burden to him. Anne asked me if I thought he would be upset if he found me napping. No, no he would not. I know he would just make sure he did not disturb me and move on.
I also told them I am worried about disability. I do not know what happens if you have to be on disability for more than a year. And looking it up or finding out what happens next is just too much for me to deal with right now, but I know that next expiration date is looming on the horizon and I cannot keep putting it off. I want something more normal. I want to feel some kind of normal and I just do not feel that right now.
We had a woman return to group last night that had stopped coming a few months ago. Angelica was triple negative, did have some lymph node involvement as well as testing positive for BRCA1 gene mutation. She had a bilateral mastectomy, chemo and radiation because of the lymph nodes. She opted for reconstruction during her mastectomies, so expanders were placed during her mastectomy surgery. After radiation finished (in February), she noted she started to not feel well. She was back to working her Financial Planning job full time and it included lots of travel, so she talked the general malaise and tiredness to all that traveling. Turned out she had an infection in her right expander. They put her on intravenous antibiotics for 7 days, but that did not clear up the infection so she had to have surgery at the end of March to remove the expander that was causing the infection.
After that, she had a new CT scan done. She cannot have MRI’s as the expanders have metal parts in valve area that is used to add fluid to help create the new “envelope” or “pocket” that will be used to place the silicone implant to complete the reconstruction. He CT scan showed a spot on her right lung. They have been watching that spot since March now, and it has continued to grow and become more dense. She was sent a pulmonologist to have him review and he did a bronchoscopy and took a biopsy but told her he was referring her to a thoracic surgeon immediately. He told her he is 90% sure this is a cancer in her lung. She will have the results of the biopsy later this week and has the first appointment with the surgeon on Friday.
Knowing that triple negative is so aggressive and that one of its first places it usually metastasizes is the lungs and the bones, I am not surprised by Angelica’s news, as much as this scares me. There is an online learning session today about living with metastatic triple negative BC, but I will miss the first part of it as I have physical therapy starting at the same time. They do post the recording on line later, so I can catch up on what was said in the future. I forgot to tell Angelica about this option. I will get her the info next time I see her.
I have been awake since 2:30 this morning, and I think it is just general anxiety about my MRI this morning. I really do not think they will find anything on this imaging, but there is always anxiety around imaging and testing for any signs of cancer return. I will definitely need a nap this afternoon.
I also confessed to Robert last night that I have been trying to hide how tired I still feel. He thinks the reason I try to hide it from everyone else is because I am trying to hide it from myself rather than just embracing what my body needs to heal. I cried yet again. I am so tired of being tired, of feeling like I am disrupting everyone else’s lives, of not feeling up to doing activities I want to do.
I made it through the past year, I am sure I will make it through the next few months. I am so tired of being tired.
Life is looking for the light at the end of the tunnel
The light is there but you still have a bend in the tunnel to pass through in order to see it. Intellectually, I know my cancer has been removed and I will complete the treatments, take the medication, and all will be well. Yet now, after six months, the fear and anxiety have shown up. I go to sleep just fine but I wake at ridiculously early hours of the morning and can’t go back to sleep. I, too, am like a kitten having nap attacks all the time. I make plans for the day and then have to cancel them because I feel too tired. I don’t have anyone to hide from which makes me miss John more than I’ve done in the past few years. Cancer sucks!