March 1, 2023
I went in to do my labs today and they wanted to take it from my new 2 day old chest port. I cringed and slightly half protested because it’s still really tender but the nurse insisted and proceeded with her plan. Well after 2 stabs and 3 nurses we learned my port doesn’t even work. They said what I’ve heard too many times in my life… “this almost NEVER happens” Mike and I looked at each other and laughed. She asked, “what, do you normally have bad luck?” I’m notorious for having bad luck!
So anyway, I’ll have to wait for a call from the Dr to put in an order to go back and see what’s wrong. But we’re continuing with chemo on Friday anyway, it’s just going to be through an IV on the wrist or arm for the first one
March 2, 2023
It’s so hard being put in a position of having to walk away from everyone I was taking care of this past year from the residents at work to the foster kids in the system. I know I need to take care of me right now but this is so hard!
Fun fact: it only took me 3 days to not be too scared to sneeze after having a chest port surgically implanted! Something about a catheter tube wrapping over my collar bone and into my jugular vein then tunneling to my heart just screams “don’t sneeze”
It was also a little entertaining walking around Walmart by myself laughing about it.
And… for anyone that’s wants a follow up on that- it only hurt a little bit
March 3, 2023
And an update on the chest port. But only kind of…
I saw the post surgical minute report that showed the surgeon flushed it after it was implanted with 500 units of Heparin and then saline so what the heck happened???
I have a dye study scheduled for Monday afternoon so I guess we shall see.
2.5 weeks since diagnosis
Treatment day 1: 364 more to go!
Launch day! Chemo #1 (out of 6)
It’s been an interesting day to say the least. We got to the oncology center at 8:30am and expected to be there for about 3 or 4 hours. Well, I couldn’t start without the results from an EKG yesterday and finding a dr to read it like ‘now’ was challenging so that delayed us a couple hours. It was almost 11am before things started rolling.
We were there around 7 hours total.
Because my chest port is a no-go for now I got an IV in the back of the hand. I HATE those. But not my biggest problem right now. Although at various times and different meds it got a little painful at times. I lost track of how many meds I got but the first one was a steroid to tolerate the chemo, and I got a 2 hour chemo drip, and a second 1 hour chemo drip, and a thigh injection of the 2 anticancer meds, and an auto injector of a drug to boost my white blood cells again. That’s a little box stuck to my belly with a little catheter tube that it stuck into me and will do the 45 minute injection tomorrow night.
Mike has been in charge of my cold caps which is a cap to wear that is frozen to help keep blood flow away from the scalp hoping to prevent or lessen hair loss. We’ll see how well this works. They are frozen on dry ice and have to be changed every 20 or 25 minutes or so to keep it cold enough. So he’s been busy all day! They go on at -37 degrees. It starts with a pretty intense headache but it doesn’t last more than a few minutes each time. The worst part is the chin strap. It has to be tight to make good contact all around. This better work! I’ve heard good reviews!
Mike was also sent on a lunch run since we were there so long. He’s taken good care of me today!
I have a better understanding of what stage my cancer is now. After imaging we learned it’s inflammatory which is the worst kind and only found in later stages either 3 or 4. Since it’s in all 3 levels of the lymph nodes but hasn’t spread farther that would put me at stage 3. Which is why this whole process is rolling so fast. It’s a race against the clock and just in time!!! I’m teetering on the edge of stage 4.
I met someone who is just finishing her treatment next week. She’s been through it all and she’s even younger than me. In her 30’s and stage 3 as well. She was pleasant to talk to and we exchanged numbers.
So far I feel ok, just a little ‘blah’ but side effects tend to come later. Here’s hoping it’s tolerable.
March 4, 2023
Treatment day 2: 363 more to go.
Random thoughts:
It’s still early but so far I woke up with a mild headache, feeling slightly shaky for the first hour or so and my tongue felt a little fuzzy. But nothing big…yet. Side effects tend to come after a few days on a downhill slide then back up again over the next couple weeks. But the nurse gave me a little IV drip that she said should make them minimal to maybe even none.
Side effects are cumulative so they get worse after each time.
Side effects that could happen…
Nausea and vomiting
Constipation or diarrhea
Mouth sores
Lack of appetite
Hair loss
Fatigue
Trouble sleeping
Headaches
Bone or joint pain
Loss of immune system/white blood cells
And probably more that I can’t think of right now.
Oh, and neuropathy in hands and feet
And apparently if I get a fever of 100.4 for more than an hour it’s straight to the ER! I’ve never been this delicate before!
Also, people ask about my family history with cancer and my mom always comes up first. She died of cancer but it started in her liver which was a transplant. Does that count? I’ve asked many doctors over the past 30 years and they’ve all been stumped and didn’t know what to say. Well, I asked my oncologist and he said because it wasn’t her liver- no, it doesn’t count. Interesting!
Nothing anyone could ask me about my life isn’t a long story.
So far my lack of any knowledge of it ends like this…
Do I have a family history of cancer that I know of? No
How did my mom die? Cancer
To my knowledge, both statements are true!
This auto injector has made #3 on my list of things that make me nervous and uncomfortable.
Before I left treatment yesterday my nurse stuck an auto injector on my belly. It has a tiny needle that sticks a small catheter into the skin to inject a shot in 27 hours. It feels like a sharp rubber band snap when it sticks you. She activated it right before she put it on me and a couple minutes later it started a count down to let me know the snap was coming by ticking like a tiny little bomb was about to go off. There was just enough pause between the last tick and the snap that everyone looked at each other like, “what happened?” then we all jumped when it went off. I’m glad I was done with my bowl of soup by then.
And what are the other 2 things on my list you ask?? Balloons and canned biscuits! You just can’t predict the moment they’re going to explode and clearly I’m not ok with that!
March 8, 2023
Treatment day 6: 359 more to go!
It’s been an interesting couple of days for sure! Mostly painful and uncomfortable but not so much feeling “sick.” This is definitely messing with my digestive system and I have a weird fuzzy feeling in my mouth. My mouth and throat are tender/sore and food tastes weird. The little bomb… er, I mean “shot” they gave me has side effects of bone and joint pain, but why would I play by the rules instead of making up my own symptoms?! For a couple days I had some significant pain that seemed to be my lymphatic system flaring up. Armpits, neck, cheeks, back… It seems to be subsiding now.
I also felt lightheaded, shakey and weak (still do a little) and came close, but DIDN’T pass out twice! Once in the kitchen, once in the shower.
Score: me 2, floor 0! Yay!
After some time at the hospital in the radiology department we’ve confirmed that my chest port is “not viable.” I’ll probably be needing another surgery to remove and replace it because the radiologist just couldn’t figure out what the problem was in the first place stating, “this has never happened before.” Yeah, well, you’ve never met me before! “Hold my beer!”
AND… The plan is to watch how the tumors and inflammation react to treatment so we know it’s actually working and I don’t even need Dr confirmation to tell that this has already had a significant effect on the inflammation which has gone down a LOT! I would guess 2/3 already! My oncologist will do official measuring before my next treatment day (March 24th) I’m curious to see what happens with that visit.
March 11, 2023
Treatment day 9: 356 more to go
I’m actually feeling like myself again today. The symptoms have subsided and I feel so much better.
I haven’t heard back about my chest port so I’ll have to give them a call on Monday. I’m feeling better just in time for another surgery. I guess it’s better to do this one thing at a time though. Hopefully the timing will be right that I’ll feel better from the surgery before round 2 starts my chemo symptoms all over again.
Once this chest port is fixed things should mellow out with appointments and things for a while.
Thank you to everyone for reaching out with all the love and support as I go through this. It means a lot to me!
March 16, 2023
I’m in the cath lab waiting for the port revision. Surgeon just came and talked to me. He said he’s not sure what happened but maybe its scar tissue under the incision site narrowing the catheter tube. He won’t know until he looks at it. It might be just uncrimping the tube or it could be replacing the whole thing. As soon as my labs come back I’ll be headed into the OR to find out.
Just got out of surgery. He reopened the little incision over my collarbone and said the catheter was kinked. He unkinked it and closed me back up. He flushed it to make sure its really working now. Hopefully I won’t be back for a third time.
All 30+ genes that were tested came back negative so this is not genetic. Good news for the kids!
I learned that my specific breast cancer is HER2+. If you’re curious what that means here’s a nice little article that explains it.
March 18, 2023
Boy they weren’t kidding when they said chemo destroys your veins. This is from over 2 weeks ago when they put the IV in my wrist. Still really tender and painful to touch. This chest port better work now!!!
Treatment day 16: 349 more to go
This surgery was definitely easier than the last. I have to stay flat on my back when I sleep to avoid pain, but if turning over is the only time I hurt then I’m not going to complain about it. Well, that and blowing my nose. That kinda hurts a little. But better today.
Wednesday is my pre-chemo lab day then Friday will be my second chemo treatment. I’m assuming at least a week of miserable side effects like last time. But at least I got a couple weeks of feeling normal in between. Enjoying it while it lasts!
And thankful that I didn’t have to go through the side effects and surgery at the same time.
Oh, and I read the post surgery report and it said there was a “fibrous band” wrapped around the catheter tube compressing it so he released it and it’s working like it should now
March 24, 2023
Treatment day 22: 343 days left <ugh>
Chemo #2 here we go again…
My pretreatment drugs before the chemo drugs and anticancer drugs.
March 30, 2023
Treatment day 28: 337 more to go
4 weeks down! 1 month, yay!
I think I’m feeling better today, but every time I’ve thought so in the past couple days it came right back. At least it gave me a break for a bit from time to time. Side effects were better AND worse this time. More nausea this time which always makes me miserable, but less mouth pain/discomfort, less abdominal pain, less lymphatic inflammation/pain. (And other things nobody ever wants to talk about TMI for facebook!)
Before I got my chest port I imagined a picc line instead of a port-a-cath. I’ll tell you all about it if you’re curious… (And if not that’s ok, it’ll give me something to do for a few minutes anyway)
A picc line is the one that has external IV connections also with a catheter tube going into a vein and is used when IV is needed frequently for weeks instead of months or years.. I got what’s called a “power port.” (Or port-a-cath) Sounds like I should be able to charge my phone with it
This is implanted completely under the skin below the collar bone with nothing exposed. This is safer in regards to infection risks and can stay for longer periods of time. A special type of needle still goes through the skin when it’s accessed which means it doesn’t eliminate getting stuck like a picc line would, but it seems to hurt a little less each time. Maybe I’m just getting used to it. It’s a bigger (shorter but fatter) needle than a typical IV so it’s capable of administering meds faster if they choose to.
The needle stays in while they are using it unlike an IV. It has to be taped in place to keep it there. When I went for my radiology exam to see why it wasn’t working the radiologist was using so much pressure to try to pass the contrast through that I felt the needle trying to lift back out. He was making me nervous and I was expecting a big sudden burst to happen. It was definitely blocked!
I have a feeling I’m not going to like the experience of having it removed when the time comes. I can’t decide if it sounds better or worse than having it put in. Creepy either way.
Click HERE an article from the Cleveland Clinic on the chemo chest port if you’re interested in pictures or more information.
Thank you for coming to my TED talk! Haha