Had my oncology appointment by phone today. It was supposed to be on the 29th but they bumped it up to miss the holidays.
We started off by talking about my pain. It’s still basically non-existent if I do nothing all day. Been using the stairs lately because the elevator is out so it’s been jabbing me in the hip occasionally, letting me know it’s still there. I haven’t had to take any pain pills again though.
Then we talked about the bloodwork. My tumour markers are still climbing, they’re at 155. In his words, “..the meds aren’t controlling the cancer anymore”. My appointment with him in February will be at his office so we can discuss the CT results and the options.
I knew this was coming but it still sucks. I don’t have any idea what my options are, or if I have any. I sure hope it isn’t chemo. I’ve been on the Ibrance/Letrozole combination for 3 years. We had a good run. Who knows, maybe he’ll keep me on it but I doubt it. He wouldn’t want to see me in person if that was the case. Something to ponder for the next 10 weeks.
On a good note, the Zoloft is working. I didn’t get panicky and shaky having to go for bloodwork yesterday. I even tried talking myself out of going (it’s the wrong time in my drug cycle, 2 weeks too early, they never told me I had to when they changed my appointment etc) but the anxiety didn’t kick in like it would have before so I got it done.
I was diagnosed with MBC 3 years ago. At that time, I was pretty depressed about the statistics regarding life expectancy. Those stats haven’t changed really. Only about 22% make it to 5 years. New drugs like the one I’m on add to that a little. In the case of Ibrance, it’s about 20 months on average. My biggest nag with this is still wondering how long I have.
So much has changed for me. Mentally and physically. As much as I’d like to pin it on good old aging, I know for the most part, it’s the cancer and the drugs I’ve been feeding my body. I sometimes wonder who I would be if I didn’t have MBC.
I’m still learning to be kind to myself. I try to rest when I need to (often) and constantly remind myself that my limitations because of the cancer are not my fault. I also know that my energy dies off about 1pm so I try to get everything done before then.
The pandemic has put a twist into everything. Instead of hiding my cancer, I’m more vocal about it. I don’t want people near me. I’ve never been a huge “people person” so this aspect of it has been relatively easy for me but it ramped up my anxiety. I’m taking Zoloft and it seems to be helping. I don’t feel like I’m balancing on the edge of a cliff and my mind is calmer. The pandemic does make me feel a little robbed of time.
Wonder what the chances are that I’ll be here for another 3 years?
I got the flu shot this morning. Because I’m immune compromised, I get the “not live” shot. I called it “dead” because the other one is “live” and shocked the pharmacist. Isn’t the opposite of live, dead?
Hopefully if I get flu like symptoms they won’t be too bad. I really hate being sick and just the thought of being sick makes me want to cry.
I changed my breakfast from toast to cereal and milk and am able to take the Zoloft now without getting nauseous. I wonder how long it will take to work and will I know it’s working?
My back still hurts but it’s getting better. I still have to be careful with what I do but it should heal.
Finally broke down and asked my GP for some anti-anxiety meds. He asked me if I was depressed. Am I? I don’t feel like I am but who am I to diagnose that. All I know is I couldn’t take the knot in my stomach anymore and the panic that accompanied any thought that included leaving my apartment, driving, shopping, cancer, visiting with people, even taking this new drug…basically life.
I kept thinking I could get a handle on this on my own but too much has happened to me and around me that is so overwhelming. Too many deaths of people and pets I know on top of living with MBC and never knowing when it will take over my body again. Hurting my back. COVID. Couldn’t take it on my own anymore.
Zoloft covers panic attacks, anxiety, PTSD, OCD and depression and I took the first one today. Please work your magic.
Tuesday night I felt a tiny pop in my back. Wednesday I woke up in excruciating pain when I moved. I was supposed to pick up groceries curbside and they were kind enough to hold them for me even though I gave them hardly any notice. Walking more than 4 or 5 steps would cause spasms and tears. As would getting to a sitting position or standing or bending to feed my cat.
Thursday I woke up feeling a little better, I could walk more than 5 steps without spasms so decided to get my groceries and another curbside order I’d placed for yarn. Wrong thing to do. Went from the grocery store to the ER. By then I wasn’t sure if I’d pulled something, cracked a rib or there was something up with my kidney.
Turns out I pulled a muscle or ligament or tendon by my spine according to the ER Dr, the pain is localized-he was able to find the spot first try. He was happy that I’d had a CT so close to this that he could access to help assess what was going on now. He said I should go in when something like this happens especially because of my situation.
Today I was feeling a little better so decided to wash my hair. It really needed it but I sure didn’t need the pain to ramp up again. The ER Dr has given me a prescription for anti-inflammatories but I haven’t filled it yet. I just can’t go through the pain it’s going to take to get it filled at a pharmacy. I know that the pain will subside over time so I’ll rest and if I’m not feeling better by Monday I’ll get it filled.
About a week before scans or bloodwork and before my next oncology appointment I am always really anxious. I don’t like needles so getting blood drawn and hoping they get the catheter in for the contrast dye for the CT scans is always nerve wracking for me. I pace, I cry, I have a harder time than normal sleeping, I do the comfort food thing. I try and find a way to get out of having these appointments. I’m always fighting my flight response-I’m not a fighter. It’s exhausting.
After the appointments, I come down off of these anxiety rides right in to depression. To me it’s a mild depression, but who knows. Even a so called “good” appointment with the oncologist isn’t safe from this. I waffle back and forth from wanting some sort of a change in my situation to it staying the same. From when will the tests show progression damn it! I’m not sure how long I can keep doing this! to I’m so glad nothing has changed, I can live with it like this.
Once I’ve gotten through all the internal arguments, for and against progression that seem to occupy my mind for most of my waking hours, I level off to what has become my normal. I just am and I just be and I let each day happen as it will.
I tell ya, the mind games having MBC plays on you are endless and exhausting and getting to that level place isn’t easy but I get there.
I didn’t get my numbers from my oncologist today. My scan is still not showing significant change and he’s not changing my drugs so I’m going to assume the numbers are ok. He says my next appointment is in January but 12 weeks is the end of December so I’m sure it’ll be a back and forth with his receptionist when she calls to book it.
I told him about the pain being back and he didn’t seem surprised. He has told me to be careful walking and lifting heavy things. My bones aren’t strong enough especially since they were radiated. If the pain returns and doesn’t go away I’m to call him.
I’m starting to have a love/hate relationship with these appointments. On the one hand I love that I’m still having them. That means I’m still here. On the other hand, I know I’m riding a fine line between good and not good so I hate waiting for the hammer to drop. These appointments always dictate my next few months of life and after almost 3 years, I’m starting to hate them too.
Had to get my bloodwork done at the hospital today. There were 9 people ahead of me even though I was there shortly after they opened.
I met a woman there that also has MBC but more advanced and a different strain than mine. She was given 24 months about 8 months ago. She’s doing chemo and it’s shrunk her tumours so she’s thinking she may beat the 24 months. We decided one of the WORST things about this disease is not ever really knowing how long you truly have. It’s all a guess.
We compared side effects and how they affect our lives and though we are on different medications, it’s all pretty much the same. We talked about being human pincushions and the buzz words people say to us (brave, strong, you can beat this!) and how it was nice to talk to someone who gets it. She’s upset she won’t get to do her bucket list because of COVID although she did get a puppy 🙂
We got really sad together and we laughed together and for 30 short minutes I felt understood without fear of scaring someone or making them think of my death or theirs. I’m would like to think she felt the same way. I really hope she beats the 24 months.
I’ve been naturally stressing for days over this. This one was at 6pm tonight. And I’m already home. Just goes to show ya, you show up early you get out early.
They got the catheter in 1st try again. I guess acting terrified makes the techs more conscious of what they’re doing. Although I’m not acting. The whole process terrifies me and I find it really hard to not run away and just avoid the whole thing.
All the other days I can almost fool myself into believing that I’m relatively healthy and dont have MBC. Lying on the bed with my arms stretched above my head, waiting for the machine to fire up and the voice telling me to “breath in, hold your breath”….”breath out” I realized what scares me the most is one of these CT scans is going to show progression. And it could be this one the way my hip is acting up again. I’ll find out next week.
Yup, the pain is back. I remember how it felt before and it feels like that now. The degree of it changes depending on what I am doing. My oncologist always asks me the level of it from 1 to 10 and in my mind I use the scale below to judge where I’m at at any given time. I’ve been living with it at a steady 3 with an increase to 4 for months but the other day it jumped to a 7. It’s back down to MY manageable 4 unless I need to get something physical done then it’ll jump back up to a 6 or a 7. The tricky part is being able to judge when the pain will stay at an increased state or will it just spike and decrease almost immediately.
Stuff that needs to get done like laundry and vacuuming are most likely going to be put off. Maybe the pain is still decreasing and if I do next to nothing for a day or two it’ll go away again. Until I learn to manage the degrees, I’ll be doing as little as possible.
Things I can do with minimal pain
walk slowly without carrying anything heavier than a can of pop 🙂
Things that cause pain and will most likely be put off until another day depending on their importance and the degree of pain I think I can deal with without having to reply on pain pills.
walking while carrying something big and/or heavy like a laundry basket
bending over or reaching up
to pick up something I dropped on the floor
getting to or from a sitting position
reaching for something on higher shelf
all things cat related (feeding, petting him if he isn’t beside me, litter box)
And I have to go easy on myself. My brain tells me I should be able to do it all but when I do, I hurt myself. I have to gently remind myself that I have terminal cancer that isn’t going to go away, not a broken bone that will heal in a week or two. It’s all such a mind f*ck.