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.

I really don’t need this right now. Seriously.

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

• sit
• stand
• wash dishes
• 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 dressed
  • 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.

I think I walked too much this week. They were fixing the sprinkler system in the underground parking so we had to move our vehicles out in the daytime for 2 days and of course there wasn’t any open street parking really close. My car was only a blockish away but it seems to be enough to have aggravated my lower spine. It started hurting in the afternoon and rather than resting which is what I would normally do, I had to go and get my car and pick up my groceries(curb-side pickup) and cart them in and put them away. The pain increased doing all this.

I went to bed in pain and naturally slept worse than I normally do. I had an internal conversation with myself this morning reasoning against taking a pain pill. All the standard stuff, it’s just a sore muscle, if I rest it’ll go away, I’m stronger than the pain… You get the idea. This went on for about an hour before I finally took a pain pill. I have METS in my lower spine and pelvis and from experience know that they’re hurting me again, it isn’t a messed up muscle.

I’d forgotten what this was like, this level of pain. I’ve been living with twinges and low grade, easy to deal with pain for a while and it’s been nice. I haven’t needed any pain pills. I’ve been able to manage the pain without them. Until today. I’m really hoping this goes away, that I just walked too much because walking too much has always aggravated the pain but I have a sneaking suspicion that it’s back to stay and I’ll need to adjust to it. I don’t want to. I’m not ready to.

Found out that someone I know has been diagnosed with MBC. It sucks that it’s not just me anymore and I don’t mean that in a jealous way, I mean it in a “it really sucks” way. Me having it was one too many as it was. I didn’t want to ever know someone else with it. I know the mind games it plays and didn’t want anyone I know to have to go through that.

The really extra sucky part is that it has invaded her organs. No treatment plan yet, but it doesn’t look good. And damned if I don’t know exactly how she’s feeling, I’ve just had longer to feel it than her. If there ever was a time when I could totally relate to someone and what they’re going through, it’s now.

I’ve known that I’m immunocompromised but today was the first time my oncologist told me I was. That made it seem more real for some reason. He’s scheduling another CT for September. He knows I’m having issues with being out there, but like I told him, if it has to be done, I’ll just work through the anxiety it causes. He asked if I had anyone who could help me if I needed it, if something happened.

Not sure why my numbers are different than what my GP told me but my neutrophils are 1.0(the reason I’m immunocompromised) 😦 my tumour markers are 110 🙂 they went down by 5. I’m still considered stable. The office called me back for a follow-up and I got into an argument with her. “He” said 3 months. Told her it needs to be in weeks, 12 weeks because of my drug cycle. She was going to check with him and get back to me. She actually hung up on me. When she called me back, she said he was busy but she’d go with my weeks and let him know that. Whew! So the appointment is for October.

I thought having MBC was stressful, but having MBC during a pandemic is worse if that’s possible. I do everything Dr Bonnie tells us to, my bubble is tiny-it’s only me, social distancing isn’t an issue for me. I wear a mask when I go anywhere, I have hand sanitizer in the car and take a Clorox wipe with me so I’m not touching anything that doesn’t belong to me. I wash my hands like crazy when I come back home, I clean all my groceries, any yarn I get sits on my deck for 3 days before I’ll touch it. (This one is really hard to do..lol) but then I had to take my car in for servicing and wait for it to be ready (it’s a big building, basically Sales, and Service all in the same building with a partition wall between the 2 spaces and a super high ceiling), and I had to go to the hospital for blood work. Twice this month. Occasionally I go into a store when I can’t get what I need curbside. I fret for days after I’ve been out.

I told very few people I had MBC until the pandemic hit. Now I tell everyone so they’ll stay away from me. I try to see the end to all this and I can’t and I get exhausted trying. My therapist says it’s all about control-I can’t control it so I get messed up. I keep telling myself I’m doing everything right. I just want to make it to the other side of this. I don’t want to die before the pandemic ends.

When I went for blood work yesterday, I got the same nurse I had the last time I was there. She’s good, and kind, and helped me take my mind away from the fear. She said she remembered me, then made me laugh by saying they only remember the “nice ones”. We were talking about COVID and she says the longer it goes on, the more she feels like she’s going to get it. I may be immunocompromised but all the essential workers, store clerks, etc, I cannot even imagine how they’re dealing with this. For once I’m glad I can’t work.

My Dr tells me what the readings should be which helps. Mt kidney function is 58, should be 60. Knew that was low, there’s a cyst or something on one of my kidneys. White blood count is 2.2, should be 4. Never knew what this one should be before. This is good since I was riding around 1 for the longest time. Tumour markers are holding steady at 115. Still working their horrendous damage but at least they aren’t climbing.

Not sure why I feel better now. Could be because there’s no surprises. Could be because my white blood count is higher than expected which, for me, is huge. Means my immune system still has a little bit of fight left.

Have to go out tomorrow so I’ll be highly anxious again. Wonder if there will be a time when I will feel safe again.