A Not very exciting update. 

battleoftheboobs

I’m feeling yucky. Feeling weird. My head hurts and I am really anxious.  I am tired but restless. I want so badly to get up and accomplish anything but my body says -no thanks.  I am so glad for my silly fur babies.  I never could have guessed what their affection and unrelenting love would mean. I mean so stinkin sweet. Ug. I don’t want to ache anymore. Just some knitting and laundry,heaven helpme even vacuuming would be a treat. Some days are good, some are not. I think tomorrow i will spend a smallfortune on groceries and make myself decidently happy.

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A Not very exciting update. 

I’m feeling yucky. Feeling weird. My head hurts and I am really anxious.  I am tired but restless. I want so badly to get up and accomplish anything but my body says -no thanks.  I am so glad for my silly fur babies.  I never could have guessed what their affection and unrelenting love would mean. I mean so stinkin sweet. Ug. I don’t want to ache anymore. Just some knitting and laundry,heaven helpme even vacuuming would be a treat. Some days are good, some are not. I think tomorrow i will spend a smallfortune on groceries and make myself decidently happy.

Don’t worry I’m doing well

I got some news today that left me with mixed emotions. I went to the kidney doctor, also known as a nephrologist (such an awesome word) for a check in. He told me my kidneys are healthy and he is glad I finally got the swelling out of my legs. I told him I am ecstatic that my knees and hips can walk and bend. I told him the amount of medicine I am on took it off slowly but surely and told him that in the last few weeks, I’ve hit a bit of a plateau. I asked “what can I do about this giant, looks like I’m at 9 months, belly of mine”? And he told me “well, nothing”. 

Nooooooooooooooooooooo!

He explained that I have gotten as much off as I can with medication. If I took any higher of a dose I would dehydrate my body to a bad place. The fluid that is left is most likely a direct result of my less than awesome liver. Crap. Draining is still an option but my oncologist doesn’t seem to like that idea. He tells me when you drain it, it comes back pretty quickly and it takes a lot of the body’s nutrients with it. 

So I’m stuck. 

I’m stuck with a body made of toothpicks, extra skin under my chin (don’t even get me started), a giant pregnant looking belly and all of the discomfort, chaleges and painful skin stretching that goes along with it. I just want to wear normal clothes again!! I don’t want to be asked “boy or girl?” At the store anymore, especially when I now understand neither are in my future. Here, here’s some salt to rub in that intensely painful wound. 

I know I will keep getting physically stronger now as I can eat more, and I truly am glad that my kidneys are ok, and that the blood tests show my liver is actually functioning pretty dern well considering BUT… I really am so very tired of lugging around this belly. It is totally ruining my 90’s heroine chic look. Ha! Ok I’m starting to find my sense of humor again. It just stinks y’all. Stinks. 

Catch up

I have been home almost a month now and I have conquered many unexpected obsticals. Who knew how low to the ground regular toilets are, or my crappy couch for that matter. “Mike, I’m stuck” has been said on more than one occation. Who knew how difficult showers were to get into and exhausting to stand during. Old people knew I guess but certainly not me. Luckily for me though I have an awesome patient navigator that found me a walker, a raised potty seat (with handles so you can push up to standing) and a shower bench. I can now lift my legs high enough to get in the shower standing up but I still like to sit under the warm water. I also have an amazing support community who bought me a cute recliner that I can get in and out of myself. 

Medically I am doing ok. I am still slowly shedding the extra fluid from my body and battling my electro lights as a a result, but that’s a natural reaction. I am battling nausea pretty hard and am having a difficult time eating. I never in my life thought I would say this but – I have NO appetite. I try really hard though and kind of force myself the best I can. I am somehow getting stronger though. I do all my p.t. exercises and try to walk everyday. I am able to do more daily. (Pats self on back. Then starts scratching it because the skin is so dry) 

My plan of attack as of last week is to still wait on the big, bad, kill everything  chemo and go forward with the targeted, more finely tuned, less side effects chemo. I had an infusion of those 2 targeted guys on Wednesday. Next week we will check my blood tests and see how everything is there then I will get a CT scan to decide on the next step. I’m not positive what plan of action comes from what results but luckily, I’m not the dr.  

I’d say my attitude is still pretty positive but I certainly have my moments. The fact that one of the treatments alters hormone reception can’t possibly have anything to do with the fact that I feel all the feelings- in a 10 second timeframe. Ha! I did that without the medicine. I will say I am getting anxious to get out of the house more and stretch my independence. I could use more human integration and quite frankly, the dog is sick of me. Hopefully Mike can get a day off soon and we can go for a nice drive. You know, like old people. 

Happy birthday to me!!!

So I’m sorry to let every body hanging this week, I Have had so mans tests, exams, surgeries and pain pills I couldn’t even tell you which way is up.

So, things you may not know: I’m still in the hospital, good times.
I have some sort of sinuous that hurts mainly because of a extreme thrush, mucusisis or some kind of virus in my mouth which makes It impossible to drink water with out pain, let alone let me eat. My liver is producing fluid that I can’t absorb so am retaining fluid, insane amounts of fluid and it has reached a point it is making it hard to breathe. Everything is painful and exhausting.

Now the tests and procedures. So far, that I recall I have had, in no particular order 2 chest ex-rays (they do it while you are in your bed which is nice) the have installed a pict line, similar to a port but just for nutrients. The MRI from hell, of which I will do my best to never think of again, ever, like serious therapy. A catheter, Various sonograms, and a Blood transfusion or 2.

Treatments 18 thousand ivs of various stuffs. But we had to get all my blood counts happy in order to get any of the treatments to be effective. That has finally begun to happen and my lil body is working hard to sleep and heal. So correspondence has been difficult. But I am making progress

There has also been a balloon bomb in my room. It is filled with valentines and cards from all my littlies and an outpouring of kindness from their parents. I can thank y’all enough for all of this. Please know how much this means to me and mike. I hope to thank everyone more properly when I can walk and eat and can stay awake for more that 10 min. Love you all

The facts as I know ’em

So my all my “counts,” white blood cell, red blood cell- joy, crashed hard on Tuesday leading me to feel, well how many was can I say bad. After mike repeatedly told me to call the dr I finally did. He was right. I found out I needed fluids, 3 white blood cell boost shots, antibiotics, and tamiflu (just in case). I also had to get an ultrasound of my port, cuz it’s a little wonky. I feel crappy y’all. Then today I went in for more fluids and said- I really wish I could swallow liquids, could I have thrush? Shore nuff. So that’s why everything tastes like burning and I can’t keep liquid in my mouth. I am glad that every ailment has some kind if cure but I can’t help but feel like I’m doing a bad job here y’all. I like to succeeded, I like to triumph adversities and instead I feel like a big ole burden. I just want to guzzle ice water and eat a sandwich!! For now I take little sips even though it tastes like saltwater and make every effort to keep it down and eat well, very little to nothing because my stupid mouth hurts. That is my vent. Hopefully graceful and uplifting Lynn will be back soon.

The little things

I’m sure I have heard it before that it’s not fighting cancer it’s fighting all the little things. That is definitely the case with me today. It’s how I couldn’t sleep because the medicine had me all blocked up and very uncomfortable. My port is still sore and I can’t really sleep on that side. It’s how my nose was stuffed up and then bloody and I have pink eye for some reason? I was convinced the dog peed somewhere but couldn’t look around because it was the middle of the night. Then I took a bath in the middle of the night to attempt to calm the f down.
Every day it’s the little things, It’s the appointments changing and the labs getting lost, it’s wanting your hoodie dry before your appointment it’s wanting to eat some amazing thing your honey made but you just can’t. It’s hard. It’s not for the weak y’all.

That said first chemo went well y’all. My dr confirmed the pathology that it is breast cancer in my liver and we took our first attack on it today. My Dr is giddy, no really, about this treatment plan. I mean really excited, it’s just right for me. So they accessed the port they put in Monday and went at it. I’m still a little uncomfortable from my innards being bound up (sorry tmi) but all in all not to bad. Because the tv I sat near had Supernatural and Bones on it the nurses kept bringing me delicious tea, Stacy picked me up with trashy magazines and gum and M Continue reading

Change of battleground.

About a week ago I finally went to my Dr. because I was feeling crap. They ran a gigillions blood tests and a CT of my chest right away. The Dr called me back and said there are lesions on my liver that are indicative of the cancer being back. Shit. He was also concerned that that it had spread to my brain. F-word. Friday we did another CT scan, an infusion of something to get my calcium levels down and a bone scan. This morning I did an MRI and met with my Doc. Happily the MRI and bone scan came back normal. I did see the word “un impressive” somewhere on the results sheet about the brain scan- rude.

That brings us to the cancer in the liver. My first reaction was “ok let’s knock it out, let’s do this” but I found out you don’t get rid of cancer in your liver. Not permanently. You treat it, you control it to the best of your ability, a while later, it comes back, JERK! Luckily I am, relatively, young and new developments come daily. That definitely breeds optimism.

So what now?
Next I will get a biopsy to prove what my Dr. Knows suspects about the type of the “highly advanced” cancer. I will get a port and start chemo as soon as possible. More on that when I know.

I have reached a heart breaking level of exhaustion. I am rivaling the cats in hours of sleep and I have to take a sit down halfway between the bedroom and the washing machine. That said I’m sorry if I couldn’t call and let you know what is going on. Even small tasks are pretty tiring to me. I will do my darnedest to keep everyone up to date here. I think there is some kind of way to subscribe if you wish. Otherwise thank you everyone for happy thoughts and vibes or prayers or whatever it is you do. I feel every las one and it helps me so so much.

Next?

Well it has been a while and much has happened. I finished my final radiation treatment last friday. Yay! Considering I went in every weekday for the last 5 weeks I was very ready for it to be over.

Radiation was stupid and I didn’t like it. It surprised me how emotionally difficult it was. Chemo, while no fun, is administered in a bright windowed room full of smiling nurses and mostly upbeat patients to commiserate with, there was TV and cookies there. Radiation is in a cold room where you lie on a weird table, half naked, with a wet towel on your chest. The nurses/ technicians are still super sweet but after telling you how helpful this treatment will be they flee behind a lead filled wall to administer the dose. There you lie, alone, in an uncomfortable position, bad radio station on, wet towel getting colder while this machine opens its screwdriver looking teeth so the radiation only goes where they want it to. It whirrs while it rotates into position and buzzes while those “teeth” open and shift. The first few treatments I counted the buzzes (14) but after a week or so the anxiety waned slightly and I could let my mind float to other thoughts. The physical effects are no treat either. Any sci-fi makeup artist worth their salt should examine the effect radiation has on tender and scarred skin. I will spare you photos but know that it looks super yuck and hurts and stings and itches. It has a delayed effect so I will be battling my skin for the next 2 weeks or so, then the healing cycle can start. Whew, I can not wait for that. I also can’t wait to wear normal clothes again. All I can really wear now is “wife beater” tank tops and all of them have a big grease stain on the left side from the constant layer of comforting Aquafore on the tender skin.

Next step starts thursday. I will begin my 5 years of Tamoxifen. It prevents estrogen from being received by the cells of my body. The type of cancer I have loves to eat estrogen and without it the cancer starves. Yay! The bad side is that my body will have all those fun and exciting hormones floating around with nowhere to go. Boo!

Speaking of feeling like and emotional wreck, well, I already do. Now that all the big dramatic milestone treatment stuff has passed I am finally starting to allow myself to feel stuff. It sucks. I hate it. In the last year and a half I up and left a city I lived in for 13 years, started down a new career path, started a business with my boyfriend, got cancer, lost a body part, lost my hair, and watched the business fold. Any one of those things would be tough but all together, I’m not coping well. For the last month or so I have been trying to deny or squish all of the anxiety and depression that these events bring up. I push them away and try to carry on. It is easy to put them aside at work because the lil uns outshine them brilliantly but unfortunately I am more than a caregiver/teacher. I need to find a way to care for myself and that prospect exhausts me. I am overwhelmed by my lack of money and transportation. I feel defeated. Don’t worry though, I know I’m not, I just feel that way right now. I’m working with the Breast Cancer Resource Center and The Livestrong Foundation to get financial and emotional counseling. My work as always, is being helpful and supportive.  I just want to be able to think a little farther in the future than 5 minutes from now. I can still take one thing at a time but I need to look to the future and honestly, that has never been my strong suit.

And in this corner…

Chemo is done my friends.

Last week was my last treatment. The effects though, they linger. I feel like I have been beaten up. Reason being, well a few things: my red and white blood cell counts dropped pretty low last week and the chemo just keeps them dropping for a little while. I get a shot that helps boost my body’s white cell production (yay) but that production happens in your bones and as a result is actually quite painful (boo). My body is not holding on to nutrients so well yet so I’m just plain ole run down. In addition, I am so frickin over this S and I’m feeling a little sad and crabby. I’m tired of not having the energy to do stuff. Practical stuff like work full time and fun stuff like – anything! I realize this is temporary and it will only get better from here but- ug.

This week I had the second to last herceptin infusion for this phase of the treatment. After next week I get larger doses but only once every three weeks for the next year. That’s no big deal really. It has very few side effects, the infusion doesn’t take too long and I can go do it after my short work day.

Next comes the super powers.

I also met with my radiologist Thursday. I didn’t take notes so all numbers are estimates, my Swiss cheese brain hasn’t been doing too well at retention these days (did I mention the Swiss chesse brain? No! Oh, big surprise, I forgot.) Thursday they did a CT scan to kind of set my place/ position for the radiation. They need to see where all my stuff is, both the stuff they want to radiate like any remaining breast tissue and lymph nodes in two places and the bits they want to avoid vis a vis my heart. They started an iv and put my arms over my head in the oddest, most uncomfortable walk like an Egyptian pose ever. Then they took this thing that I thought was your run of the mill blue scratchy hospital blanket, and to my surprise started forming it around my arms. When they finished I had a little mold thing that I will lay down on in the radiation gizmo so I am in the same position every time. I go in every day, Monday – Friday for basically the next 6 weeks. The coolness of the mold making process/material and the thoughts of the many things I could make with it temporarily distracted me from the fact that the CT scanner is weird and that my shoulder was completely asleep. When the novelty of the space age mold making blanket wore off I may have had myself a small freak out. I have done these scans before and the one they use is very modern and not claustrophobic at all but sometimes you just cant derail the internal freakout train. In the eternity of, I don’t know, 3 minutes tops, I pondered my breathing. I was sure I needed to take a deep breath to calm down but I probably shouldn’t because it would ruin everything. I could sneak a deep breath and it would be fine but maybe I’m supposed to hold my breath but why aren’t they telling me to and I think I’m just supposed to breath normally and how do I do that again? I also decided that my shoulder falling asleep was clearly the first signs of lymphoma and that I had screwed up it all up by laying wrong  and now I was going to be endangering my arm every time I went for treatment because I did it wrong today.

I went straight to coo coo ville.

When they let me move my arm and I got to look at the mold thing I got all fascinated again I calmed down. Then the tech said “ok now I’m going to give you your tattoos if that’s ok.” What? Tattoos? Radiation just got so much cooler! I had no idea that there would be tattoos, this may be an interesting day yet. Needless to say there was no big machine, no cool symbols, they just put this little teeny tiny dot by my sternum then one on each side with what looked like a pin. I mean teeny. I asked her if she would do a star but she only laughed at me (I was totally serious.) They also laugh if you ask if you can pick the color by the way, so don’t bother. Then I was told to drink extra fluids and go home.

After passing out on the couch with my “comfort dog” (apparently an actual thing that my dog would fail any test for) I woke up and went right to bed with my “sleeping cat” (ok not an actual thing but you know all cats would totally pass). I was so ready for it to be friday.