Finally had a phone appointment with my oncologist. It kept getting postponed. They said I had to have it as a follow-up. They had it scheduled for 5pm. (I don’t why it was so late in the day. They were the ones that scheduled it.) She called me this morning when I wasn’t around my phone. She said she was sick again and couldn’t do the 5pm one, and said she’d call at 12pm. I waited for a while, but she didn’t call back. So, I called the oncology department about it, and they were confused about it. She called me after that. So weird.
I brought up my bone pain. It’s still pretty bad. She asked if it was in one area. It’s not. It’s all over. She said I should try taking 1mg of dexamethasone daily, instead of the 0.5mg. She wants me to switch from anastrozole to letrozole. Apparently, letrozole is similar. According to Google, letrozole is a hormone based chemotherapy. Anastrozole could be causing some of the bone pain as well. So she’ll prescribe it, and I’ll get it through the mail. She said it’s very important that I stop anastrozole, then wait a day, and then I can start letrozole. I can’t have them at the same time. Hopefully this will help.
I also talked about a ‘mass’ or tumor I started noticing a few days ago. It’s big. It’s on the left side of my chest, and starts with a weird looking dimple. It goes from close to my neck near my left shoulder until my heart area. She said she has to look at it in person. She wrote down what I told her anyways. She said I should probably have an in-person appointment after the bone scan at the end of the month. She said the problem is she’ll be in Tacoma during that time until the end of July. She said I most likely will see a colleague of hers instead. I hope I’m just imagining this ‘mass’. Don’t know what they’ll do about it. Especially with someone new to my ‘case’. I feel like I need a new oncologist. She did tell me to keep her up to date. She doesn’t seem to like email, which makes it harder. Hopefully my bone pain will get better soon, and the mass I see is really nothing.
God this sucks!! This time of waiting. Waiting for it all to start.
Be careful what you wish for, they say. Tomorrow he gets the port put in and liver biopsies taken. Chemo starts next Tuesday. We are starting with the FOLFOX, the same chemo as last time. Then I don’t know what happens when the start the targeted chemo/immunotherapy. We still don’t know when radiation will begin, he has the tattoos already.
I can’t feel. I have tried and I’m just numb. I’m scared. And I’m scared of what will happen when I have to feel this. I am already so tired and worn out. I need help. I need a friend!! I want a friend! I just feel so alone and fear I’m about to be even more alone.
But for now it’s time to wind down, tomorrow is a big day…
I was overwhelmed by all the touching messages I received after my last post. I was brought to tears over almost every one of them. What I hadn’t expected nor foreseen were all the gifts that were sent to me. I was surprised and somewhat abashed. I definitely appreciate every single gesture, but I’m glad they’re trickling to a stop now. It was wonderful, but overwhelming. Keep the messages…
Despite the market downturn and investor reluctance in the face of an unstable market, some health technology companies are defying the trend and raising substantial amounts of capital. According to CB Insights, 23 healthcare-focused startups reached the $1 billion valuation mark became "unicorns" in 2022.
Read more via Fierce Healthcare
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Oncologist is ditching our “wait and see” approach for something more aggro: scans, then a possible surgery to remove the breast mass and get me to No Evidence of Disease (NED). She also wants me to go to oncology rehab because she believes my fatigue is due to deconditioning.
Scans. 😒 this means a breast MRI, which are the worst.
Surgery.
NO EVIDENCE OF DISEASE.
Rehab 😒 and a possible return of all my energy.
I am having so many feelings right now it’s unreal.
I could have to have another surgery.
I could get back to almost normal. Not normal enough to dispatch again, but normal enough to be thrown back to the rat race.
But I could get back to normal enough to go hiking again, too. And keep up with my companions on vacation.
I could start making plans for the future. But I could have to start making plans for the future. I could get more years, but again, nobody knows how many.
This is a LOT and my therapist better bring her A game next time we talk, because she’s getting the dark and depressed version of this entry.
btw as someone who lost their mother to cancer before they graduated high school if you see someone mourning the death of a loved one or friend and decide that they are a person you should make fun of i genuinely think you’re one of the most heartless beings on the planet and i hope in your time of need when you are grieving and finally understanding what it’s like and how fucking painful losing a loved one is, you get what was coming to you, and no one is there to help you through it
Here I am looking slightly dishevelled, hopped up on Ativan, wearing a hospital gown and heading into the longest MRI of my life, today. Brain, cervical and thoracic spine. As if I’m not claustrophobic enough, they lock a mask over my face for the brain portion.
Unfortunately, one of the machines broke down and my appointment was rescheduled 3 times. I’m grateful they were able to squeeze me in before the weekend. I cope with cluster headaches/migraines that can even wake me up at night. Sometimes my skull is burning right down my neck. This is all likely nerve-related stuff but I prefer to be safe than sorry. (I actually haven’t had a MRI for over 6 months.) It would be nice to hear that the cancer is shrinking. 🙏
Next week, I have a bone scan, CT scan, lab work and an oncologist appointment (all at different hospitals). It will be a very busy week along with all of the kids’ appointments and things I need to do for them. The adventures of being a Mom and a cancer patient never ends! 🎉
As it’s Easter weekend, I hope the beautiful weather continues and to relax as much as possible. Aside from maybe sorting some paperwork, I hope to get outside for a walk.
Most of the results for my tests will likely take 2 weeks. I heard things are moving slowly at the hospital as management is away and there’s limited radiologist on staff. So I’ll be lucky to hear anything back by mid-April.
Anyway, those 2 Ativan’s made me really tired. I managed to shower when I got home (washing the hospital cooties off me). But now, I think it’s audiobook time (if I can stay awake).
Here’s a video of my Aunt and Uncles oldest cat (18) laying on me and washing herself. She gave me shit at the end of trying to move her.
Had a phone appointment with my oncologist today. A couple of days ago, I went to reach for something and then felt a pop deep in my left lower back. It suddenly was in pain. Today the pain radiated from there to my spine and to my left leg. I sometimes feel so numb that my leg buckles. I can’t feel it. There’s been spikes in the pain, too. I told her about this. She thinks it might be sciatica. She also said I have spine mets that could be affecting it. I brought up how my dizziness and nausea has gotten worse. I also have a pounding headache every so often. She became even more concerned about that. She said it sounds like I might have brain mets, and the pounding headache is caused by high pressure in my brain. Scary. I also forgot to tell her that my eyesight blurs occasionally, which could be another sign. She wants me to go to Urgent Care (UC) as soon as possible. She also suggested the ER. I think the ER treats me worse. (UC is usually nice to me.) I was thinking of going to UC Friday night. She also said they might be able to do a brain MRI while I’m there. She’ll put an order in for it. I thought the closest place to get one is their Port Orchard clinic. If they can, that’s great. She’s going to make a follow-up phone appointment early next week. I’m scared and don’t want to go yet to UC. If it’s sciatica, I wonder what they can do for the pain and weirdness. I don’t want brain mets, though. Not sure what they’ll do there if it’s that.
Clifton Strengths is wildly accurate but this blurb in the new report they sent me is unreal
Last year I set up a jeopardy game for a room of high level professionals and once they got their variety of buzzers (screaming chickens, kazoos, bells, etc) the room turned so silly and heehee you wouldn't believe it had you only seen the prior presentations.
Give a health care professional a rubber chicken and ask them what are the key documentation components for a psych diagnosis secondary to substance dependency and brother you're never going to cement that knowledge faster
Urgent aid request from someone I know. This request is time-sensitive; if you can’t help out, reblogs/sharing the graphic elsewhere would be greatly appreciated.