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General Category => General Discussion => Topic started by: KT 💣 KλBoƠM on April 29, 2024, 04:21:03 am
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I had kept this mainly to FB and my personal Discord since it was just Jeff and Dave who were really "in the know" about my health and Dave I update via phone, but with Kodiac joining I thought since I have posted about my transplants in the past, why not post about my cancer.
So here it is:
I found a lump in the fall of 2023 and thought perhaps it was just a pulled muscle or something. After all my family was dealing with my mom's health and possible cancer as well as the death of my God Father from Colorectal Cancer and my sister-in-law's father's Pancreatic Cancer. Things were just too chaotic to really focus too much on a lump that did not hurt. After a month I mentioned it to my mom who urged me to get it checked. I called my family doctor who I have to leave a message and the secretary calls me back but I did not know they did call me back as it went to my voice mail instead of my answering machine. I ended up going to an Urgent Care in Tecumseh (just east of my city which is not too far and where it was suggested I go) and I had a mammogram and an ultrasound. After their findings they wanted me to get a breast biopsy. The findings were "high chance of cancer". The biopsy confirmed it. I had cancer. Officially I was diagnosed with Stage 2A Invasive Ductal Carcinoma Grade 3. It had spread but not out of the range of the breast. I guess the lymph nodes near the breast are still considered the breast area. I got this diagnosis 2 days before Christmas Day 2023. With Christmas this meant I start everything in January of 2024. This was an anxious time but once things started moving they moved fast.
I saw the oncologist on Jan 11th, had a related heart test on the 15th as Chemo would be hard on the heart, and then got the Chemo Port (Xcela Plus LASV Valve Port) inserted into my chest into my Superior Vena Cava. This is where my Chemo would be done from as my veins are very bad from overuse over the years and they can only use one arm on me due to the AV Fistula from hemo Dialysis.
(https://my.clevelandclinic.org/-/scassets/images/org/health/articles/22619-vena-cava)
My first Chemo was on Jan 22nd and was uneventful and then I continued to have Chemo every Monday after that. I saw my surgeon who would eventually do the lumpectomy and will be seeing him for that surgery this Tuesday.
The Chemo seemed to have no ill effects on me until about the 2-week mark. I started losing my hair and huge clumps. Washing, brushing and styling my hair became impossible, and I shaved my head completely. As my Chemotherapy continued week after week I noticed a change in my skin and nails (bleeding nailbeds, separation from the nailbeds resulting in dead white nails). I started getting huge rashes on my hands and a bit on my face as well as my nails started changing (hands and feet) and were bleeding and my cuticles disappeared without having to push them back (as well as a corn stopped growing - a positive).
Because of the bleeding issue, I was told to skip my last Chemo (finished early) and now am only getting Herceptin (Trastuzumab), a HER2 inhibitor targeted therapy, which works against HER2-positive breast cancers by stopping the HER2 receptor from telling the cancer to grow and divide. I get that every 3 weeks still.
I will be getting my Lumpectomy on April 30th and from there we will see if I still need radiation (no more chemo).
The nails people don't notice as they just assume it is nail polish (it is not) but the toe nails turning white I have been told I may lose a few nails but they will grow back. They have already separated from the nailbed (not all). 2 nails have started to turn black (I won't post toe pics. I have shared enough of myself). Also the numbness of the fingers and toes are one thing but I did not realize the full extent of it. It is so hard to pick things up, flip through pages, do up buttons, use zippers, etc. Still, it is all a small price to pay for my breast cancer to be cured. After all, it seems everyone around me is not doing so well with their cancer treatments resulting in having to stop early, go into palliative care, and/or dying. At least my cancer is curable.
I thought being immunosuppressed from chemo would be no different than being immunosuppressed from transplant medication but I was wrong. The latter affects only the B and T cells where as Chemo affects all. I had been hospitalized twice this month. The 2nd stay was just last week for Febrile neutropenia and URI - Upper respiratory infection with possible Sepsis. My body was not fighting it and I started feeling really bad. My blood pressure skyrocketed to 201/110 when normal for me is 110/78 and I had a fever and felt oddly dizzy and a type of tired where I felt like my body was being pulled down hard by gravity. And here I thought I had experienced all types of dizziness there was to experience (low blood pressure, post-surgical, septic shock dizziness, drunk, etc). It was a new experience for me and now I know what to look for.
But now I am back home. My fingers are starting to feel less sensitive so I can type more again, and I am catching up on sleep (my last hospital stay I got less sleep than I did in a long time due to other patients having issues throughout the night with breathing and medical staff having to come into the room at all hours of the night). I haven't been gaming as much due to all this so I thought it was high time I posted this in case anyone was wondering what was going on with me.
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I was not sure if I am having the actual Lumpectomy on Tuesday, April 30th or a consult for it. Turns out it is just the consultation.
Good because I was not prepared with everything that has happened this month.
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Would be nice if they can give your body a little break. This treatment has been pretty rough as it is.
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You are litterally the strongest woman I ever met and am sure you will beat that cancer, just like you beat everything else one step at a time and one day at a time.
For the hair and nails, don’t worry too much about it. Like in any war, during the battle there’s blood sweat and tears. But when it’s over, the grass starts being green again. I have seen many cancers around me in the last 10 years, and after being cured all the ladies went back to being their smexy selves after healing and regrowing everything that’s left. Time is your friend during these times.
I for one am happy that you are still here with us to do some shenanigans. Maybe one day I will talk about the last 10 years. But idk i’m not ready yet.
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Thanks guys. :)
I talked to my surgeon and the next steps are surgery to remove the lump and if it is further across them possibly remove a breast. Also I will have 3 lymph nodes removed. The risks are lymphedema in the leg on that side as well as the arm.
After the surgery I will have to have radiation every day of the week with weekends off for a year. I will also continue the Herceptin IV every 3 weeks for the rest of the year. That is hard on my heart so they will continue doing monthly heart ultrasounds and MUGA scans with the dye.
I don't consider myself strong honestly. I think I just don't know how else to be given my other health issues I have had since I was a baby. It is all I know. I do get frustrated though but I have never been angry about my health as I never really experienced what life is without any health issues. It is normal to me. Even though Cancer itself is pretty new to me.
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Didn’t know that DAILY radiation was a thing. Or even safe.
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Didn’t know that DAILY radiation was a thing. Or even safe.
Minute radiation exposure is something we all live with every single day. Radio waves and sunlight to name a couple. X-Rays for instance can cause serious damage or worse is you had to endure that kind of exposure on a daily. But at very low levels on a tightly focused area, you shouldn't experience much, if any permanent damage.
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Didn’t know that DAILY radiation was a thing. Or even safe.
I will get weekends off :P
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My eyebrows soon followed finally mid May but now I feel that they are growing back as well as the hair on my head. I was told once I have stopped chemo that my hair would grow back but I did not know how long afterwards it would start to grow. It is more like fuzz though. You can't see the eyebrows yet (just shadows of the shape where they are supposed to be) but I am starting to be able to feel them.
The good thing is .. without all my naturally thick hair I am cooler in this heat (and it seems like this summer may beat some records at this rate). I am still more sensitive to the sun though.
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That's great news Angie. It will take some time for your hair to grow back. But it will come back. Your nails should grow back normal again too. But that may take a bit longer. Hopefully the surgery goes smooth as silk and you will be cancer free before you know it.
Maybe this might seem a bit rude now. But I assure you that it will be funny later. But giving your current condition, at least your saving money on hair care products and services.
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Yay hair lmao
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That's great news Angie. It will take some time for your hair to grow back. But it will come back. Your nails should grow back normal again too. But that may take a bit longer. Hopefully the surgery goes smooth as silk and you will be cancer free before you know it.
Maybe this might seem a bit rude now. But I assure you that it will be funny later. But giving your current condition, at least your saving money on hair care products and services.
Ha ya I noticed! After all I ended up in the local hospital TWICE last month and it was nice not to worry about washing my hair which always took longer since it is so think or worrying about bringing shampoo or a hair brush. YES, VERY NICE!!! In fact, I think I will keep my hair short for now on. Any idea of styles that would suit me?
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From memory you look good with bangs, styling the sides will be tricky though
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Thank you Kodiac :)
But looks like I will be bald a little longer after all:
I had my breast cancer surgery and they removed 3 lymph nodes. They found the cancer is bigger than they thought (even though smaller than before Chemo started in January this year) so I will have to sadly go back on Chemo as well as get the Radiation. So the hair that is starting to grow back again will end up falling out so I will be shaving my head again in the next week or 2.
The dye they used to see the path of the Lymph nodes has made my pee blue and my right breast blue (yes, now I can say I have Blue Boob!). I have to drink lots but was soooo exhausted that I fell asleep for hours after my pills as soon as I got home. I am not allowed to sleep on my right side for 6 weeks or even lift anything for that long. My pain is manageable and I held off on my Tylenol 2 until now. My throat also hurts from the tube actually more than the boob ever since finally caving and taking a T2.
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Seems bad at first read but you’re standing strong! It got smaller meaning the chemo and rad is working and it should go way better now that the bigger ones are not there, your body can focus on fighting the rest!
As for peing blue doesn’t scare me, i pee blue every year because it’s my favorite food dye and on my birthday i eat soo mich of it I just pee it out lmao. I loooove the metallic taste of blue.
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Seems bad at first read but you’re standing strong! It got smaller meaning the chemo and rad is working and it should go way better now that the bigger ones are not there, your body can focus on fighting the rest!
As for peing blue doesn’t scare me, i pee blue every year because it’s my favorite food dye and on my birthday i eat soo mich of it I just pee it out lmao. I loooove the metallic taste of blue.
lol @ Kodi!
Ya I haven't started radiation yet. But yes the chemo made it smaller and that is excellent!
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i pee blue every year because it’s my favorite food dye and on my birthday i eat soo mich of it I just pee it out lmao. I loooove the metallic taste of blue.
Now that makes me worried.
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Rebandaging my boob incision made me pee more blue ... so now I feel like my boob is one of those squeeze things of blue icing :P
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Oh yeah reminds me of the singer in the fifth element.
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Rebandaging my boob incision made me pee more blue ... so now I feel like my boob is one of those squeeze things of blue icing :P
Well that just inserted some disturbing thoughts. :-X Hey babe. Let me get some icing for my blueberry muffin. ;D
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Rebandaging my boob incision made me pee more blue ... so now I feel like my boob is one of those squeeze things of blue icing :P
Well that just inserted some disturbing thoughts. :-X Hey babe. Let me get some icing for my blueberry muffin. ;D
Oh geeze lol
As it is my hair is growing again on my head (very patch though where I thought it would all grow back even) and my eyebrows are coming back in! I am not getting all excited though as they could not get all the cancer so I will need MORE Chemo .. which means I will lose it all again anyway. My follow-up appointment is in 3 days from today (on the 5th).
Also tomorrow I am getting an X-Ray done as my Chemo port stopped working after it was used for the lumpectomy surgery. When I got my Herceptin last Monday it would not work and they had to give me an IV in my hand. The nurse had a helmet with special lenses where she could see my veins and got it first try! Man I wish they had that at all the labs!!
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I will have my second cycle of the new Chemo next Monday but this Thursday I will talk to the new doctor, the Radiation Oncologist. I really thought they would wait until the chemo is done before starting radiation. That is a whole new ball of ugh! Friday I go for my pre-chemo blood labs to see how my heart is doing (as this all is very hard on my heart) as well as make sure my kidney is hanging in there. Tomorrow I am getting an ultrasound and the next day I am getting an EchoCardioGram (ECG) for the heart. This week is so packed with appointments and then later this month I go for other tests but this has already become my new normal.
I play games when I can between appointments, how chemo is affecting my body and my mom's health (still undiagnosed) and my uncle's brain damage and severe stroke and memory loss and hemiplegia. It has been crazy.
On top of that I got rid of my credit cards as part of my insolvency to try to live within my means as disability cut back how much they are giving me (I mentioned that before in Feb) and it has been severely tight (I can't pay all my bills but have to play the juggling game, thus why I WAS using my CC so much). I might have to start looking for cheaper internet but chances are they won't have the high speeds I am used to currently. But it is my most expensive bill right now. I already have no TV, VoIP phone and a decade old cell phone. I don't know how they expect me to live like this to be honest... and I still do not get why how much I get from Provincial Disability dropped as soon as I started Cancer treatments. It makes no sense and I still feel that the new case worker screwed up calculations. But when you have all this going on, it is hard to confront her while balancing everything else.
In a way the hair loss wasn't as traumatizing as people make it out to be but I think perhaps that is because I have been through so much that I am more or less desensitized to changes to my appearance by now. I found out my head is not a smooth favourable shape but I could wear hats and scarves and my wig. Now that my hair is growing back I have to shave again! Oh no! lol the one thing I did NOT miss :P
I had a dream a few nights ago that I put my hair up in a pony tail! That will still be awhile off but I guess my mind is ready for it :P
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Man oh man, things for you sound like it's getting kind of rough. But got to get a handle on those finances for sure. Maybe there is some way that you can earn a little something on the side to help get you by? I really don't know how but there has to be something you can do. But keep on hanging in there Angie. You'll get through this cancer thing eventually.
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Man oh man, things for you sound like it's getting kind of rough. But got to get a handle on those finances for sure. Maybe there is some way that you can earn a little something on the side to help get you by? I really don't know how but there has to be something you can do. But keep on hanging in there Angie. You'll get through this cancer thing eventually.
Thanks. Ya the only thing I could think of would be working on Pesky Pete's website again but I really don't want to as he takes advantage of everyone he gets to work for him. He is super lazy with huge ambitions. He is the type who has big dreams but wants to ride someone else's coat tails.
I have my mom coming with me tomorrow for the radiation oncologist. I have enjoyed the earlier appointments this week but tomorrow's is in the early afternoon instead. It will be even harder to get parking than it already is (pretty much guaranteed that even people who can't walk have to part at the far end of the parking lot due to all the spots taken up for most of the 8am - 4pm time slot and my appointment is 1:45pm). I am just glad I can walk but feel bad for those who walk with crutches, canes, and walkers. But I will update tomorrow when I have more info on my future radiation and when that will start and if it will be 5 days a week every week as originally planned.
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It went better than I expected as my radiation oncologist is easier to understand than my chemo oncologist was. He explained everything to me and was very patient and took the time to even listen to my mom explain how things were when I was a baby with kidney disease (at that time still undiagnosed) and turns out he has a teen daughter who has a baby was diagnosed with the same renal reflux I had but got the surgery whereas when I was a baby it was missed leading to the loss of my kidneys. I know most doctors would have gotten impatient about my mom talking about something not relevant to what I was there for but he was very nice.
My Radiation WILL be at the same time as I am getting my Chemo and the radiation will be 5 days a week every week but just for an hour targeted from 4 sides of the area of the cancer to get rid of any residual cancer. But the radiation will only be for 6 weeks. Also they are very willing to work around any other appointments I have which I am very happy about.
My skin will be red and itchy and like a sun burn but they will give me creams that even if my disability won't cover they will work with me so that I will get it. I have been set up with a cancer social worker finally (since this doctor actually listened I was able to talk about my finances during this time which has been extremely hard) to work with me and my disability to get the things I need covered. So over all, it was a good appointment.
Tomorrow I go for my blood labs since Monday is my next chemo.
Wednesday I will get mapping done so they know the area to target with the radiation.
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Have a nice radiation sesh
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Have a nice radiation sesh
I can officially say I have tats now but just are just dots but are the same thing as real tats. They are to mark the areas to be radiated.
They say I will know soon when I start but it will definitely be within the next couple weeks. And yes some of the days will fall on my Chemo days.
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I can officially say I have tats now
Too bad they are not tats you could be proud of sharing.
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I can officially say I have tats now
Too bad they are not tats you could be proud of sharing.
YOu don't have any neither :P
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YOu don't have any neither :P
Well, no? :-[
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YOu don't have any neither :P
Well, no? :-[
Besides these are just dots and very hard to even spot.