I want to be a sign of hope not despair
I want my journey and this blog to describe what is real – what it is really like to go through this experience. I also want it to provide a level of hope for someone who is going this this experience.
I could say that before this recurrence, my blog was about hope – or at least the story was ending well – with going through the experience and moving on to a healthy life after cancer.
Now, I’m reminded of something my friend Lori said at a support group meeting – she was one of the few people in the meeting with stage 4 breast cancer – the uncurable kind. There were many others in the room who were newly diagnosed with early stage disease (the curable kind). She said that she felt like she was everyones worst nightmare. That idea that she was exactly what everyone else didn’t want to be. Sometimes I feel that way too. I feel like people don’t want to hear about my current journey because it is too scary. It is exactly what someone with early stage disease doesn’t want to hear about.
But I’m not that sign of despair – at least not right now. Through some miracle, my cancer was caught as a local recurrence – so it is still being treated as curable. It is not stage four metastatic – although that nasty metastatic word is officially used in my medical reports. It is described as a metastasis to the axillary lymph nodes. It has spread, just not to the parts where we know it cannot be controlled.
I haven’t really thought a lot about what this means. I thought that I wanted to know a prognosis when I talked to my oncologist. He didn’t give a number. His comment was that because of the HER2 status, we have another tool to target the cancer that is highly effective. He gave me hope that this is curable.
I remember when my mom was diagnosed with state 4 kidney cancer. One of the doctors called it a “grim” prognosis. “Grim” turned out to be six weeks. My appointment with my oncologist was nothing like that. It felt more like my first diagnosis except with a lot less information. There is no staging with the recurrence. There was no number that represented a prognosis.
When I think about it, the prognosis number was something that was used to determine the type of treatment. Calculations were done that said that my prognosis improved by x percent if I had chemotherapy. That wasn’t a question this time – again because of the HER2 status.
I do want my blog to be something that anybody can feel comfortable reading – regardless of where they are in their journey. But I also want it to be a place where I can tell the truth. The process of writing often brings out feelings that I didn’t realize I had. I don’t want to have to hold back on my feelings. I don’t want to have to put out a sense of forever optimism because sometimes I’m just not feeling that way.
Today, I’m still feeling crappy – but now I feel more like I have a cold than anything else. My nose is stuffy and I have a headache. I talked to the GPO (General Practice Oncologist) who was on duty today about my troublesome weekend, but also how I was currently feeling. He prescribed a nasal spray and recommended a covid test (which was negative). We talked about when I can and when I shouldn’t take tylenol. I had a low grade fever – 37.4 – which wasn’t considered enough to be of concern, and so I could take tylenol but I needed to check my temperature again if I felt the need for tylenol later. The process is pretty much that I check my temp before taking either Tylenol or Advil. I wish I didn’t have to take either, but there is no good reason to suffer unnecessarily. If the meds help to manage the symptons, then they are worth taking.
I am to call the doctor again tomorrow. If my sinuses don’t start to clear up, they will likely prescribe an antibiotic – mostly because I’m on chemo and headed towards my nadir (that time in the cycle where my blood counts are lowest and infection is most serious). I’m hoping a good nights sleep will help me feel better in the morning.
On another note, I’ve been trying to find a decent pattern for making myself chemo caps. I’m looking for something relatively simple in a comfortable jersey knit fabric (or light fleece). If you like doing internet research, please let me know of any patterns you find that might be decent. I’m OK to pay for patterns as long as they don’t suck. My internet searches haven’t been hugely effective, so I’d be happy for some help. Thanks.