08-12-2020
It’s been awhile since I’ve added to my blog. Life is complicated and finding a new place to fit into what is now a new day-to-day for me has been involved and hard in many ways, and I try not to whine, but I’ve been whiny and sad and tired as of late.
Chemo is done, but the effects from it are not, and with radiation 4 days old now, the fatigue is deeper than I thought it would ever get, and the neuropathy has worsened to the point of not being able to always feel my fingertips and toes. The radiation adds to that problem, and I’m still going every three weeks for the targeted drugs that include the same side effects. Talk about trigger stacking on my poor old body!
What has changed so much is that my daughter and granddaughter moved out, earlier than they planned when a very large fight ensured between Dorian and her dad. Dorian was supposed to stay at her dad’s until I was done with chemo, but staying there wasn’t an option and participation in keeping me safe with segregation and masks became the point of contention and so they moved early.
For the first time I don’t always feel supported by my family. They don’t say it, but they imply and their behavior reflects that they think I’m being too cautious about protecting myself from Covid19.
It’s also rare that I have felt like crying, but this is one of them and that’s hard on me because when I give into the sadness it makes me even sadder, but if I try to stay strong, “You got this,” as so many tell me, it beats me up like a heavy weight fighter taking on a bantam weight boxer. It’s painful, it’s exhausting, and it eats at me.
Protecting is my way of being proactive about my health. It’s something I can do for me, whereas I can’t do shit about cancer except allow doctors and nurses to manipulate my body and wellbeing with drugs and treatments that I can only fight or subserve toward. Maybe it’s why the whole, “Wear your damn mask,” notion means so much to me. It’s something I can see and participate in to protect myself in ways that are next to impossible with the invisible cancer that I hope is gone for good, but one never knows with this disease.
I guess that is why cancer is so scary to people, (to me) because the doctors can say you have reached a milestone at so many years, cancer-free, and even call it cured, but one ever knows, not for sure.
For the religious that would be faith, for me, it’s unresolved since it’s not concrete or tangible until it is…
Having the house to ourselves is good, that part is okay, as both Mike and I feel safer since Tiff and Dorian were still visiting friends and family, and not always with masks and physical distance, so it worked out okay, and my dogs are much happier being able to come and go without the cat needed to be put away before they could venture upstairs.
In some ways it was Kismet, and I’ll look at it as a gift for Mike and I to have more alone time and not have to filter every word that we speak aloud for fear of offending.
Medical stuff
Radiation is such a weird experience, and other than the initial set up for a mold that holds you in place, and the CT scan to make sure everything lines up where the radiation oncologist wants the beams, all of which took about 30 minutes, it takes longer to get into a gown, get on the table and get everything lined up for the radiation than the actual treatment.
I feel nothing in the 2 minutes it takes each time and it’s over before you can even settle in. I wanted to scratch an itch yesterday, but didn’t want to interrupt the treatment, and then it was over. I know the sounds of the final movement of the beams now, but the first time, I wasn’t sure what to expect.
The first day of treatment, which was on Tuesday, I silently wept during the treatment, because I felt so out of my body with the radiation machine hovering around me, alone, naked boobs exposed to a machine that, even when someone puts a mask and google eyes on it, seems cold. Everyone else has to leave the area, and for the first time, lying there looking at a distorted reflection in the main part of the machine that sends radiation into my body, I wondered if all of this is worth it, but am unable to answer that right now, because I don’t know. Faith?
I have 16 days of radiation, with four done now, and it’s everyday of the week with the weekends off, so it will be over pretty soon, but with nearly an hour of driving to and from, and such a short time there, it’s an interruption to my daily life.
Hematoma
I had my surgery on April 1st, and finally, 4 months later, a doctor looked at my surgical sight for the first time. I told Dr. Dewitt, the radiation oncologist setting me up for the treatment, that my breast was still pretty jacked up, with discoloration and a very hard lump inside. As she examined me, she said I have a hematoma, and a very large one at that, and I will likely need it treated since it not only has me all lopsided, it’s uncomfortable and unsightly and so now I have an appointment with the surgeon next Monday to have it looked at for the first time by the doctor that did the actual surgery.
Dr. Dewitt looked at it several times, and compared it to my other breast and said, “You are very lopsided, but we can still do treatment, however, that will likely need to be removed.” Awesome.
Having breast cancer during a pandemic is a double edged sword. On one hand, it forces me to rest, stay home and not expose myself to anyone other than Mike and those helping with the treatments. But, then again, not having a surgical sight looked at, even though I kept mentioning that it was very, very bruised and hard, seems unreasonable, for the very reason of where things can go wrong, such as in my case.
That just adds more stress for me and my situation, since now I have to expose myself to even more people, especially when going anywhere already seems complicated.
Even in the cancer treatment center I was exposed to another patient that decided to walk down the hall, past several other people and me with his mask hanging off his one ear and his mouth and nose both exposed.
I did send a complaint to the hospital, got a nice standard letter of apology and how they do screen everyone coming in, (temperature check), and that she would make sure the techs and nurses were aware. Nice enough, but really, what is wrong with people? Why is wearing a mask so damn hard? I feel so angered by people like that. What are they thinking? Do they think they are immune to the virus, or is it that they just don’t give a shit about their fellow humans. I mean, it’s a cancer center, with very ill people going through some of the harshest treatment that no one should have to go though and this yo-yo thinks it’s okay to walk around with his mask off. I saw him again today, and he had the mask on, but his nose was hanging out, and he was being escorted by one of the techs who was right next to him.
So, even though everyone has to take a Covid19 test before starting radiation treatment, that’s still very unreliable when someone like that is walking around others, not protecting himself, or others, how does one feel safe in a place that should be very safe?
Mike is still not allowed in with me, which would make me feel so much better, but why not, if patients are not following the rules and that sort of thing is happening? Why prevent the loved ones of the sick person from giving support when they (me) feel in danger by other patients?
Mentioning that I might be overreacting, comes from Mike being tired of me pointing out people not wearing masks, and such on TV and out in public.
I told Mike that I don’t want to take all these precautions, but since I suffer the side effects that make me feel like I was (still am), in a long, hard bar fight and getting my ass kicked, and made to stay home and not go anywhere for the past 5 months only to be exposed to something that could kill me, makes it feel all for naught.
Yes, I’m going to overreact, or simply react to taking care of my health so I can get through all of this treatment and tell the cancer, “Bye, bye.”
I know it’s hard to understand if you have not gone through the side effects, the body image considerations, the treatment that will continue for a year, (along with the side effects), and now potentially more surgery to repair the hematoma. It’s overwhelming and with the fatigue, I have a hard time just getting out of bed each day, which is sometimes hard to tell if that’s depression or exhaustion.
And, like for everyone else, there doesn’t appear to be an end in sight for the Covid virus, at least not until there is a vaccine, but for those with compromised immune systems, the end, could be just that…
I get that, and Mike said he understands, but I think he is just tired of my talking about it when I see people gathering and not wearing masks. It’s a hard place to be in, for all of us, but even harder when I’m being told to stop talking about it, even as I’m living with the grip that cancer and the treatment have on me right at the moment.
On the flip side, my hair is starting go grow back, so now I have this fine fuzz all over my scalp, with the hair that had the strength to hold on and stay on the ship, getting long enough to poke out of my caps in the back and around the edges.
08-17-2020
Today would have been my father’s birthday, (mine is tomorrow), so it’s ironic that I saw the surgeon for the hematoma today. Based on the tumultuous but short lived relationship I had with my biological father, he was removed from my life a couple of times, like a tumor that refuses to die and comes back.
And now this hematoma will need to be removed.
Yes, she said it should be removed, and since it’s not a liquid any longer it will need to be surgically removed, but it could come back, and then if it does, it can be drained with a needle, but a drainage tube would need to be inserted.
I went to radiation first, and the same man was wearing his mask, but had his nose uncovered, and when I left, another man walked down the hall with no mask at all. I did say, “Where is your mask, there are sick people here?” I also stopped by the desk to tell them.
What the hell, and then the surgeon told me all those things about the hematoma with her mask hanging off her nose the entire time.
I had to take a Covid test to get the radiation treatment, and I wasn’t looked at, post-surgery, for 4 months because of the safety issues with Covid, and then all of this, by the very people that made me do the test, and now, because my surgery sight wasn’t physically looked at for so long, I have to undergo more surgery.
I feel like I’m in some comedy SiFi movie where no one else sees the problem, but I have unmasked, germ-wielding and conspiracy theory people laughing in my face as I push back against them not to come near since I have cancer and going through all this treatment. Stay back, I yell in my mind, and laughter ensues, followed by super close up frames of the corona virus flying up my nose.
I’m going to ask someone on the oncology team for a referral for a 2nd opinion on the hematoma, since I’m not feeling too confident in the original surgeon, which is likely my own fault. I think I wrote about it here, that I didn’t have a relationship with the surgeon because she was just not a conversational type, but that was okay if she was good at her job because I’d likely never see her again. And I didn’t until the oncologist confirmed the hematoma and there was a need. Karma?