Tuesday, August 31, 2010
Here I am in the ER prior to isolation
Broad spectrum antibiotics--#2
Wonderful nurses! On my way to isolation upstairs. Hi Soprena!! (lots of love to you, I know you are reading this!)
Home away from home
My continual heart monitor
Immediate family visitors only--Kerri, Scott, Nick & Kristi
Scott, my hospital roommate
I thought I would share some hospital photos considering I was there for 5 days and all. I am working on a google image slideshow and will link it to my blog so you can click on it and see different aspects of my bout with cancer from photos pre-surgery to some from my plastic surgeon visit, etc...
Before my release from the hospital yesterday afternoon I had to have my port access removed. When they access my port they use a large needle that is bent (a Huber needle) then put a circular sponge-type thing full of antibiotics and then a clear dressing over it, it is attached to an IV line so they then just access the line like they would an IV in my hand. Anyway, they had to remove it so I could go home. My nurse said she couldn't do it so we waited for another nurse who supposedly knew what she was doing.....wrong. And let me tell you, even when I am at my oncologists office (where all they deal with is ports) it is very tender when they insert the needle or when they remove the needle--it really hurts. So this nurse tried 3 times and couldn't remove the needle!!! I finally asked if I could go to my oncologist (which is a one building over from the hospital) and just have them remove it. She said I could---if not she probably would have just continued--like when you are on fire and instead of water someone pee's on you to put it out--it gets the job done, just not how you would expect.
We went to my oncologist and the nurse did it on the first try with no complications..........thanks St. Francis for a bang-up job of continually fucking me over...I plan to write a letter (leaving expletives out) about the care I received, I am a little disappointed. There we some nurses (and the doctors) who were amazing and I felt like they were in my corner, but others were opponents to my care and it really shouldn't be that way.
Today I am feeling alright. I have a cold (watery eyes, sore throat and stuffy nose) I am not sure if its left over from the hospital stay or my bodies reaction to having have been so sick the past 5 days. My bones are extremely sore. When you get the white blood cell booster it makes the cells create rapidly (mine going from 500 to 4200) and that causes bone pain. My hair has continued to fall out, still not clumps, but more than normal in the shower and when I brush my hair. Looks like I will have to buzz it sooner than I thought. I have to admit that it felt unusual to not place my breakfast order and have it delivered to my room. To wake up to Archer (our beagle) baying like crazy rather than someone taking my vitals. To be able to use the bathroom without having to wheel in an IV pole. And to be able to have a full nights sleep without the lights being switched on, meds being put in my port, or someone waking me to ask if I had pooped since last shift change. Sweet, small, glorious victory to sleep through the night with my own pillows and in my bed, see my dogs and wake up next to Scott.
I am wondering where you put foundation when you have no hair...normally you put it to your hair line and then blend down from your chin.............do I blend back to the back of my neck...cover my whole head? Curious.
I danced a bit in the shower today...until I washed my hair and had it woven throughout my fingers, where it stayed after I rinsed and clogged the drain.....then I cried--a lot. I cried because I had to go to the hospital, because my counts were deathly low, because I felt mistreated, because it is unfair and unjust, because of what it put Scott through, because it made my mom worry from a distance for 5 days, because this was supposed to be my "good" week, because it was really scary and I felt I had to stay strong and stoic, because I have to have chemo again next week, because I have to lose my hair, because I hurt and because my heart is broken for the people who go through this alone and because I have cancer.
The cry/dance is unbelievable therapeutic and allows me to center enough just to get frustrated again. I am frustrated with the fact that there is no financial support through the state that I qualify for. I think that somehow I should be able to access money like I would for unemployment. Here I am, on a leave of absence for work for the length of my treatment, having the same amount of bills as we did before, plus all the medical bills and co-pays--adding to it my recent hospital stay and unable to receive funds. I am so thankful for all of the fundraising and donations we have received. You have no idea how heartfelt that thank-you is--from both Scott and I. We would be lost without all the financial, physical and emotional support. The network that has been created after my diagnosis is astounding and mind blowing. Knowing that I can write and express my frustrations and that they are being heard and acknowledged is the best therapy there is. It is keeping me sane--and giving Scott a much needed break as my sounding board.
So I am home safe. I have a physical therapy appointment today and then go again to get my counts checked on Friday. I then get them checked again on Monday, then if all is well I have my next round of chemo on Tuesday, a week from today.
Sunday, August 29, 2010
After 2 injections of the white cell booster my ANC is at 4200!! It took a major leap from yesterday...which was a measly 500. These leaps and bounds are great--as long as they continue to go forward. We are hoping I get to go home tomorrow and that I continue to feel okay (and my counts stay up) so I can have my second round of chemo on the 7th. My platelets are still a little low but "I am almost out of the woods." But I just found out that I may have to move to a double room now-----fuck, fuck, fuck. I love out "almost out of the woods" goes to, share a room with this person who is germy, possibly contagious, oh...and rest comfortable. fuck.
I wrote this next paragraph prior to finding out I will probably have to share a room. I am proud of myself for the single room--but my anxiety won't do so well in a double...
I would just like to say that I am officially a big girl (and no, not because I am chubby) but because I stayed at the hospital overnight ALL BY MYSELF!!!!!!!!!!! I know what you are thinking..."scott you dirty scoundrel, how dare you leave sweet, mild mannered, can do no wrong Dori all alone" HA. For those of you who know me and Scott you well know that he would do anything for me and that we work very well in tandem. For godsakes, the first night I was here he layed on 3 chairs, then transitioned to laying over the end of my bed and literally was my foot rest. They found him a recliner for the second night but he is a stomach sleeper and was super uncomfortable. So last night I gave him marching orders, he can go home to sleep--after all I am the one getting meds that allow me to fall asleep, I also have a bed.
I dislike hospitals and they increase my anxiety but I have gotten comfortable here in my little niche and was sleeping well. It was super empowering to be here myself and not because I just don't have anyone for support (flashback to the "other" open chemo room) but because I was able to do it.......surprisingly exhilarating. Our plan is to do the same thing tonight. He works at the hospital where I am so he just comes by after his shift, watches some TV with me until I get sleepy then heads home (which is also only 10 minutes away).
I also was well stocked with old fashioned donuts last night smuggled by my sisters and Nick--a good pick me up around 3:30am :)
So this whole hospitalization thing is shitty and the worst part is I had no control over it at all--but the doctors did. The odds were somehow still stacked in my favor considering I haven't had a fever, blood clot, or any of that other stuff that can happen when your counts are low..........but it never should have gotten this bad. So I come to the hospital where I am in isolation and they are working on bringing my cells up------ i.s.o.l.a.t.i.o.n--------a word that apparently isn't the same for all hospital personnel. As I had mentioned before people came in without gowns, without masks and even without gloves---having the opposite effect that we were going for here. This morning I hear my nurse getting talked to by someone while she was standing in my room doorway (I was still in isolation this morning) and she was getting told that she needed a mask and needed to shut the (my) door right now! What it boils down to is whomever she was talking to told her that they had been handling my isolation wrong MY ENTIRE STAY! Once again I am lucky that I didn't catch anything from staff while in isolation--I really feel like the isolation was a joke. Just another domino set up to fuck me over.....
All I want is someone to fess up to the mistake about missing my shot to begin with, to apologize for not getting me my nausea medication on time (let alone 3 hours late), to not listening when I explain symptoms, to not wanting to be my nurse because "it is a pain to get gowned up", to ignore my page for the same reason--just someone to make the wrong a right. It is extremely frustrating because it isn't just me that gets screwed over within the medical system, it is frightening to think of the possible outcomes of my situation.........a deep sigh is all I really have in response, and a pit of anger burning in my belly.
Bitter is probably a good word to express my feelings about this whole thing. I am not angry that I have cancer, or have to get chemo, or have to lose my hair and feel crappy--all of that I know has to happen--it is the cancer meal deal, done and done and out of my control. But all of this current bullshit, could have been controlled, it isn't a "trial and error" when the error veered from protocol or I know I am nauseated and need fucking medicine, etc............(deep sigh)
Yesterday was a big day, I took a shower, had my bed sheets changed, got a new gown and had diarrhea all day. Was the diarrhea too much for you to know? Well get used to it, I am in the hospital and they are super on top of bowel movements here--I think I have been asked more about that than anything else. If you are curious I had a movement today as well--I think it made my nurses day. Not only has Scott brought me in cheetos and twix but he brought me toilet paper from home. I am not sure what they have on the roll here but it sure as hell isn't toilet paper. But they have morphine so I forgive them for the toilet paper.
All in all I thank my lucky stars that I am okay. I told Scott that the hospital stay is like a weird hotel/mini-awkward vacation. I am not in near the pain that I was after my mastectomy and I am mobile. I can eat and drink on my own and have TV and the internet (now that I find out I have to share a room tonight it has turned into a creepy vacation of mini-terror). After a few nights though my body is aching to be in my own bed and to get to sleep through the night without having my vitals taken, and to get this damn heart monitor off my chest, and wearing a shirt with a back--gowns are no picnic.
My leg hair is also pretty burly at this point and I sort of wish I had shaved prior to coming into the hospital. They check my legs and feet for swelling all the time (I just giggle a bit inside) and try not to look them in the eye because I am afraid I will crack up. 21 days is coming up so my hair should begin to come out soon, my scalp is already a little different and a little tender and when I shower or brush my hair a lot more is coming out than normal. I am planning on shaving (well buzzing) my head prior to losing large amounts of hair. I still can't decide how that will sit with me internally (not necessarily shaving my head, but losing my hair in general)---empowerment is my goal, but in the back of my mind is "cancer patient." It is the stereotypical image of cancer in my mind (baldness). I am determined to change that.
Fingers crossed I don't have to change rooms and that I get to go home tomorrow!
Friday, August 27, 2010
My count is down to 200 so it looks like I will be calling the Franciscan Health System home for awhile--well at least through the weekend. Last night was rough. I ended up finally falling asleep around 6am or so, just to be woken up by a lab guy that wasn't even supposed to take my blood--welcome to hospital living. I saw oncology this morning and they are going to be giving me 5 consecutive (days) injections to help bring my counts up so the length of my stay at this lovely establishment is undetermined at this point.
Also the food sucks. I am on a neutropenic diet, which itself isn't bad (just nothing fresh because of bacteria) but I am also on a bland diet so I don't upset my stomach. So breakfast was bland, lunch will be bland, and dinner.........you guessed it, bland. Thank god I ate those fucking cheetos yesterday or I would beat the chemo to it and pull my hair out. Which, if you are curious is still here, and my leg hair is too (a bit much for Scott but he is rolling with it).
There isn't much to do here either, hospital and fun usually aren't on the same page--throw in isolation and there isn't a chance in hell. I am hoping some pain medication for my throat (which still is very, very sore and won't until my counts go up) will liven up the party. I have a window with a view of the top of another building and some trees, a tv and internet access--so at least I can continue my Lost watching on netflix online.
I just realized that my call button is still rogue and will probably annoy day shift just as much as I did night shift--hopefully no one will spit in my bland, bland oatmeal and rice.
Not my ideal weekend but a low count beats the hell out of a blood clot.
Well it is 5am and I have yet to fall asleep. Scott on the other hand has gathered chairs, a few pillows and a blanket for a makeshift bed. Apparently it is comfortable because he has been snoring like a bear in hibernation. Isolation isn't so bad, I have my own room and because I was admitted for my low counts and not pain my hospital stay is much different than after surgery. And my port is getting used to the full potential--definitely worth the scary insert.
Isolation means that staff entering my room wear a gown, gloves, mask the whole bit. Except my nurse, who seems to haphazardly follow precautions. She is dressed to the 't' when she is in direct contact (blood draw, giving me meds) but when coming in to do things where she isn't talking to me (pillow cases, bring water) the precautions seem to fall to the way-side. But she is amazing and brings me an endless supply of grahm crackers and applesauce so she is alright in my book. Plus, when I was in the ER, even after my counts were known I didn't go into isolation--I am not too worried. And I have been a bit obnoxious, not on purpose, but the call button cord was stuck on the bed so every time I moved, adjusted the bed or anything really it would page a nurse---this happened for a few hours before it was discovered to be rogue.
My mouth is so dry that not only is my tongue raw and sticks to the top of my mouth, but my cheeks, and lips are involved and stuck together--like flypaper all crumpled up. I haven't been able to get any sleep, despite the array of medications I have been given. I don't feel exhausted so I assume it is left over adrenaline of some sort from being panicky when we came into the ER and I was having trouble breathing--I haven't been able to relax since. I am just waiting for the other shoe to drop.
And I have only been given the "head tilt" 26 year old, you poor young lady with breast cancer look. I did surprise a tech when he was putting the stickies on my chest to keep track of my heart. Moving down a gown and seeing my yaybies definitely wasn't what he was expecting--his facial expression was priceless. But hell, I probably would do the same thing: no harm, no foul.
There is nothing else to report really--insomnia, low counts, supportive nursing staff, scott the hibernating bear and that we will meet with oncology in the morning to figure out the next steps, which most likely involve me staying in the hospital awhile and a shit-pot full of antibiotics (I already have had a lot).
I am very thankful that I don't have an infection at this point. That would be very scary territory with my counts the way they are. Last lab work showed my white blood cell count at 1.8 (normal range 4-11) and my ANC at 325. We don't yet know if they continued to drop since those labs were taken almost 12 hours ago but are crossing our fingers they have stayed the same.
While I have been typing this Scott has decided that his makeshift bed is no longer comfortable and has put a chair at both sides of my bed near my feet and is laying across them using my bed as the new middle chair with my feet resting on his back. Hilarious, but I am annoyed because I know he will probably fall asleep by the time I click "publish post".
Thursday, August 26, 2010
I woke up this morning with watery eyes, a very stuffy nose and congestion in my chest. I called the oncologist and went on with my morning of laying in bed watching Lost on netflix on demand. My chest began to get tighter and it became harder to breathe. I called oncology again and was instructed to head to the ER. Where I am currently, but am soon to be admitted to the hospital in isolation. I had a chest CT and X-rays--there seems to be nothing in my chest (great sign!). But my ANC count has dropped from 1100 to 325...........not good at all. Anything under 500 is very scary territory for infection and other complications with chemo and just surviving daily germs. As a result I am going to be admitted to the hospital, put on broad spectrum antibiotics and probably remain in isolation. I am feeling surprisingly okay, just a little anxious. The good thing is that I don't have a temperature or any obvious signs of infection currently, thank goodness. I am in good hands, at the hospital where Scott works, and he is here with me.
I will take any positive thoughts you all send my way!
I will take any positive thoughts you all send my way!
Wednesday, August 25, 2010
At my oncology appointment we were discussing that my counts were low and Rose (my wonderful oncology nurse) said that she wasn't too worried because I received a shot the day after chemo that helps boost my white blood cells (kicks them into overdrive, if you will). BUT I DID NOT GET THE SHOT. Yep, that is right, no fucking shot. While I was receiving chemo everything was sort of crazy and orders were being placed, doctors called, and it was a lot of hub-bub. I remembered something from my chemo teach about getting a shot but I was reassured (over and over) that I was getting everything that I needed. Now I come to find out that they were supposed to have scheduled me to come back the day after chemo to get this shot.............fuck.
So this leaves me with an Absolute Neutrophil Count (ANC)of 1100 as of yesterday. Normally that would be fine because my white blood cells would begin to increase with the help of this shot. But now mine are likely to head down from here--which leads into scary territory: infection/hospitalization territory...... Neutropenia is a count at or below 1000....
Shit, shit, shit. I thought I was going to be going on the uphill, but instead I am holding onto a small rope trying not to fall too far downhill. I will have my counts done again on Friday and then see Rose on Monday. There is a concern that I will spike a fever...which means the hospital. At least with the next round this won't be as much of a concern (because I will get the shot).
On top of my counts remaining low I have mucositis. This is the cause of my bleeding tongue, the sores in and around my mouth, and my ears feeling like they are on fire. Also why some things taste weird (I can barely stand ginger ale and water takes like metal). At this point it isn't an infection, but it is a double-whammy because with my counts low and getting lower it can lead to an infection and can't clear up because I don't have any white blood cells to fight infection(in my mouth and esophagus). So I was given a prescription for "magic mouthwash" a mixture of lidocaine, benadryl and some other things that make it tolerable to eat and drink.
Enough medical gumbo for the day, I am exhausted. My pain medication, magic mouthwash are I are off to bed.
Tuesday, August 24, 2010
Well it has been a week since my first round of chemo. Today I had to cancel an acupuncture appointment because I had a rough night last night, unable to sleep and up with a lot of stomach pain, diarrhea and nausea--the only place I wanted to be was in the fetal position.
I did go in to get my counts checked, they were low--but that is what we expected, they weren't too low (which is good--"mini celebration"). I was dehydrated so I stayed in the infusion room for an hour or so getting fluids and some nausea meds in my port. I have to go back tomorrow to get everything checked again and meet with the oncologist. I am looking forward to the follow-up because this heartburn radiating into my ears that feels like hot lava then pouring out of my ear drums just isn't working so well for me right now. Either is my bloaty stomach that is so sore it feels better to push it out than suck it in...
But I am no worse for the ware of this round of chemo. I am in my nadir period so we are even more aware of infections, I think we are taking my temperature every 2 hours (including night time) and watching the rash I have to see if it spreads. My tongue is so raw that air hurts it....I have found that coating it with chocolate pudding is pretty soothing :)
While getting fluids today I was able to go to the "other" infusion room. The way it is set up at my hospital is there is the chemo area that my oncologist runs, then there is an outpatient chemo area where my oncologists writes my prescription and it is dispersed there. Why there are these two rooms I don't know, but I know that I go to the outpatient one because it is cheaper with the insurance I have.
Today, though, while getting fluids I went to the "other" room. Not too impressed and for one small, tiny, little, minuscule, moment in time I said thanks for insurance bullshit. This room was so wide open, no curtains, it felt cold and isolating and elderly women and one man were all facing in (like a circle really) covered in hospital blankets and hooked up to IVs with chemo and fluid. The nurses were pleasant but what a heartbreaking room to walk into. Scott and I both looked at each other, and later talked about how "lucky" we are that I am getting chemo at the outpatient facility.
While waiting to receive my fluids an elderly woman sat in the chair beside me, I am an eavesdropper and overheard that she was nervous about getting a port put in, and that she was beginning her chemo today. She was accompanied by someone, presumably her daughter, so I thought I would chime in. I got up from my chair walked over and offered them both to feel my port, told her a bit about the surgery (not that I was awake and in pain the entire time, but the just of it) and that she will be happy because it will save her veins. Then I just hopped back over (wow I sound pretty limber here...really I have slowly walked and teetered) and sat down in my chair.
And it hit me...........no one has told that woman anything! Why should she have to start chemo today, without a port?! Then have a port inserted Friday? She was bruised arm to arm and very frail--what an injustice, who is her advocate? Who answers her questions, or who even gives her the floorspace to question?
I will be the first to state that I am over-opinionated on many things, I am not afraid to tell you those opinions, argue a bit, but still remain internally smug that I am probably right. I also stand up for myself, sometimes in a put my-foot-in my-mouth type of way, because it was not needed, but I do so just the same. I also am like a momma bear when it comes to my friends and family---got to get through me before you ever get to them.............so seeing women, alone today caught me off guard, it just didn't seem right.
I was (is, am, are) terrified to find out I have cancer. I was terrified of surgery, questions, tests, options, support, diagnosis, staging, life span, fertility--but I started the journey on pretty solid ground. Walking into that room today seeing people with no one their with them during their chemo, all blankly staring in the center or holding a worn book--slapped me with the feeling of what alone would really be like...and for many, this is a reality. The contrast of experience with cancer is frightening. Cancer doula, cancer doula, cancer doula!
Today I became thankful for my place of chemotherapy and the care that I am receiving. My heart broke for the women who don't have the army fighting with them like I do, and I made it all day without a long nap.
So today I felt alive again (not like "me", but the closest I have come so far) had raw emotions, ate actual food, rode in a car, felt incredibly miserable and had a "nadir" date with my husband....
My new goal is to see how long my leg hair will grow before it all falls out....I would take bets but we are working against the clock so it wouldn't be fair.
hoping a good night leads me to a good morning.
Monday, August 23, 2010
You know those days in college where you had partied so hard you couldn't remember the day of the week it was when you woke up, where you went, if you actually had fun, and what you did or did not do? Well, welcome to chemo. It took me awhile to rationalize with myself that today is Monday---almost a FULL WEEK since chemo--WHAT?! Where the hell was I? Well I can tell you where I was--in bed, a.s.l.e.e.p. pretty much for a full week. I can't recall how I got up to use the bathroom, take medications or eat, but apparently I did (I must be magic). Or......it could have something to do with the water/Gatorade fairies I have because every time I rolled over dying of thirst--there it was. Brilliant little things (hugs to mom and Scott).
So now I am a bit out of the stupor but still so weak it takes a lot for me to sit upright on the couch. My arms feel like they are being held down by weights and my throat constantly burns. I have an acne like rash all over my chest and on my face--so when I look in the mirror I resemble myself in 7th grade (not the best memory). I have mouth sores (around my mouth), thanks to chemo and heart burn so bad that it burns up into my ears. I hope that chemo is ravaging the cancer cells like it is every other part of my body...whew this is going to be a long road (5 more times).
I took a shower today (you should applaud here)and conditioned my hair. HA HA HA--conditioning my hair is like polishing a turd (I am pretty sure that is a saying). I will be losing my hair soon, conditioned or not. I am actually looking forward to it, once I lose it, the night sweats will be much easier to deal with....
Not much as happened in my world in the last week. I just hunkered down and held on. That is my plan for the rest of treatment...go with it. I can't really fight it because chemo wins (every time), but if I embrace the nasty, tongue-in-cheek bitch that it is maybe our friendship will create a miserable balance of health and sanity. Many authors have to go to experience things (trips, step out of their comfort zone) "eat, pray, love" shit before they can write their first book. My experience just landed smack dab in my lap--well technically my boob, but I'll take it just the same.
Usually when life throws me lemons I would exchange them for limes to put in a corona, but this experience is helping me let go.............of a lot. I hold grudges, I have to be right, I don't like to lose, I would prefer to look "good" a majority of the time, I get anxious, I get angry, I sometimes react before I think things through, I want the house cleaned "my" way, I want to be sure everything is just how "I" want it..............me, me, me, me. But it was me with control.......now I am me with no control over any part of my body, which trickles down into the rest of my life......at the end of the experience I hope to be more lighthearted, less of a control freak and appreciate the small, daily things. #1 being able to get out of bed without having to run to the toilet--but you get the idea.
I have said it before, I don't want to be who I was before, cancer is a life changing experience (and I am embracing it the best I can). I imagine for many it is devastating and their life recuperates in a much different way than I am foreseeing mine. This is a shitty, long detour, but one with scenic routes, loved ones, good meds, amazing people and a lot of self-reflection. So buckle up--you are all in it with me.
Tomorrow I begin my "nadir" period. It is the 7ish days where my counts are most likely to be low, and I am most likely to get an infection or become hospitalized. I go in the morning to get them checked. So I go from a week in bed with little to no recall, to a week of recuperating (but in a dangerous zone of infection), then one decent week, then back to chemo again.....next chemo date, Sept. 7th.
Thursday, August 19, 2010
One treatment down (hopefully just 5 more to go). It is crazy how three bags of "fluid" over the length of a day can mess you up. Chemo day itself wasn't that bad. I had mom and Scott with me and an incredible nurse. Oncology nurses are a breed of their own, thank goodness for them! We checked in at 8am and was given a tutorial and asked a bunch of questions. All 3 of us then got to order breakfast while waiting for my pre-meds. My port was accessed for the first time (not a pleasant experience) but it was just one poke--I can deal with that. Then we all three ordered lunches and my chemo meds came. Each bag has to be put in for a certain amount of time, which ends up taking all day (8-4:30). When the needle was taken out of my port that was also pretty uncomfortable (a weird suction feeling) but I was then done for the day. When the last bag went in I could feel myself getting tired...........and that hasn't left yet.
Luckily for me the nausea hasn't been that bad (they gave me the "big guns") because I am always sick to my stomach....but talking about hitting the "chemo wall" I am there and bounced back about 40 feet. It hurts to type, I am awake about 20 minutes at a time and my brain isn't functioning how it normally does.....so I am sure this post is much less interesting than my others...
But I have one treatment behind me, small victories feel just fine.
Monday, August 16, 2010
Well tomorrow is the big day, begins at 8am and lasts 6 hours. I plan to do a ceremonial, last shaving of the legs, pack up my chemo bag, watch some mind-numbing TV, cry a bit, paint my nails, drink a few good beers, hopefully not hyperventilate, take some valium and get some sleep.
I spent the last few days at the ocean with family and it was a great break. As much as I love facebook and my blog--not having the internet helped center me a bit. I have moved from wallowing in fear to more of a die hard like bruce willis. If I am going to have to do this, and I am, then I am going to fucking do it. I will ride it out...shit, vomit, nausea and hair loss happens, so i will just embrace it...........(easier said than done, but I am working on it!)
I also went to the plastic surgeon on Friday and had some fluid injected into my left yaybie so it no longer has the likeness of a wrinkled apple with goose-bumps...well I guess it still does, it is just bigger, so in a shirt it looks about the same size as the right yaybie--I am balanced! Cheers! We have to wait to add more fluid until right before the next round of chemo (when my counts will be the highest and it is okay for them to poke me with a needle and use a huge syringe to put saline into my chest).
And further accomplishments: thanks to a great phone conversation with my cancer doula (love you Patti!) I realized that I can spend time on the bathroom floor in fits of hysterics, but I also have to let people help (HUGE issue for me, again, working on it!). I am lucky to be surrounded by the people I am, and life has a great way of weeding out people, what I am left with is a group of people stronger and more supportive than I can imagine, a web of people from all areas of my life, woven together--making supportive an understatement.........love to you all.
My mom cleaned my house today, getting everything "chemo" ready. I was surprised to learn that it takes a week for my white blood cells to drop (the time where I am more susceptible to disease, illness and having to go in the hospital for having a fever). So we are starting out with a clean slate, and keeping Clorox wipes as our right hand. I have enough hand sanitizer to take out the plague and am ready to shave my head at a moments notice (though it usually takes approximately 21 days for your hair to fall out after your first cycle of chemo).
So here I sit, on the eve of the scariest thing I have yet to do in my young life. I wouldn't wish this anticipation and fear on anyone, acknowledging it for myself is plenty terrifying. I really don't have any thoughts that are profound, words of encouragement for myself or anything that makes it easier. I don't have a choice in the matter, so here I go....
(I feel like chemo eve should be some sort of holiday--maybe a tree, some lights...I know it sounds like christmas but in my twisted thinking a pink tree decorated with twinkle lights, some bras and throw-up bags seems festive enough to put a smile on my face and a laugh in my belly.)
cancer picked the wrong bitch.
Friday, August 13, 2010
Desiree is donating 20% of her sales (up to August 21st) to help me pay medical bills. Please check out her site!! Lots of love and thanks to Desiree!
(sorry I can't figure out how to make the link active on the blog, just copy/paste it)
(sorry I can't figure out how to make the link active on the blog, just copy/paste it)
Lots under my belt: chemo teach, PET Scan, and another trip to the plastic surgeon the last two days. Today at the plastic surgeon I had fluid put in the left side to make it match a little more to the right side. Due to having extra skin/fat it didn't hurt.....wahooo.
I thought I was ready for the chemo teach, I read everything, talked to people, and did my own research. And it wasn't bad, it was just a reiteration of everything I had read previously. Good news: my mom will be able to be with me after I start chemo! But the chemo teach broke me. I cried throughout the "class". I was able to drive home but went straight to the bathroom, sat on the ground and wailed. I cried so hard, I broke out in hives, couldn't breathe and began shaking. I ignored my mom and sister--wanting to just be alone. Nothing I did made it better, and to top it off I couldn't have any carbs or sugars because of my PET Scan today (nothing 24 hours prior).
I didn't just break, I transformed. All of the pain, unknown, anger, nerves, and loss of control came to a head. The dam finally broke, and is still spilling over today. I cry uncontrollably and my thoughts are clouded. Things seem to be coming out of the cracks.....I can't keep a handle on it and am in mid-meltdown. Yep, here I am, meltdown...a big fatty ass, world hating, woe is me, I don't want to wake up, meltdown. I am honestly surprised that I lasted this long.....we should have placed bets.
My family can't help me because I need to be alone, I can't help myself because I am lost. What kicked it into high gear was the awareness that I really won't have control over anything once I start chemo............nothing, zip, zilch, nada..... This is foreign to me and is frightening, so frightening that the last two days have been complete panic attacks.
Also we found out some news financially and it looks as though things aren't going to be as stable as we would have hoped during my treatment. I know I can't control this either, which sends me into another whirlwind of tears. Any fundraising ideas or anyone who wants to be in charge of one.....there are no words to express our gratitude to those who have or will help us.
I don't think there are words to describe the helplessness I feel and the amount of terror that has made its home in my stomach.
I am in a free fall.............straight to chemo on Tuesday.
Wednesday, August 11, 2010
Well I am back from Okanogan and had both my nutrition and physical therapist appointment today, both went well but with the traveling and not feeling so well yesterday I am pretty exhausted. I was fortunate enough when I was in Okanogan to be invited to a dinner with some pretty amazing women. All are currently undergoing treatment for breast cancer or are survivors, or support people of a loved one with breast cancer. It was a gracious invitation and I am so thankful the timing worked for me to attend. Thanks to all the ladies!!
I read through my folder of information from the oncologist today to bone up for my chemo teach tomorrow. It is with horror that I read my mom may not be able to be with me, she had a live vaccine given to her a week ago--the information says I have to avoid people given a live vaccine for 30 days!! We will get the final decision tomorrow but for now I have the worry knot in my stomach......
Here is a bit of info on one of the drugs I am getting (docetaxel) so you all can bone up to:
This drug can cause allergic reactions in some people when the drug is given, especially with the first few treatments. Although you will be given medicine ahead of time to lower this risk, reactions are still possible. Mild reactions may consist of fever, chills, skin itching, or feeling flushed. More serious reactions happen rarely, but can be dangerous. Symptoms can include feeling lightheaded or dizzy (due to low blood pressure), chest tightness, shortness of breath, back pain, or swelling of the face, tongue, or throat. Tell your doctor or nurse right away if you notice any of these symptoms during or after being given the drug.
This drug may cause your body to retain fluid. This can lead to swelling in your hands or feet. Fluid may also collect in your abdomen, which could make you feel bloated. In more serious cases, fluid may collect in your chest, which can lead to trouble breathing. Let your doctor or nurse know right away if you suddenly gain weight, notice swelling in any part of your body, or develop shortness of breath.
You may have nausea and vomiting on the day you receive this drug or in the first few days afterward. Your doctor may give you medicine before your treatment to help prevent nausea and vomiting. You will likely also get a prescription for an anti-nausea medicine that you can take at home. It is important to have these medicines on hand and to take them as prescribed by your doctor.
This drug may cause sores in the mouth or on the lips, which often occur within the first few weeks after starting treatment. This can cause mouth pain, bleeding, or even trouble eating. Your doctor or nurse can suggest ways to reduce this, such as changing the way you eat or how you brush your teeth. If needed, your doctor can prescribe medicine to help with the pain.
This drug can cause diarrhea, which in some cases may be severe. If left unchecked, this could lead to dehydration and chemical imbalances in the body. Your doctor may prescribe medicine to help prevent or control this side effect. It is very important that you take this medicine as prescribed. Make sure you get the medicine right away, so that you will have it at home when you need it.
This drug may cause damage to certain nerves in the body, which can lead to a condition called peripheral neuropathy. This can cause numbness, weakness, pain, or sensations of burning or tingling, usually in the hands or feet. These are sometimes related to being exposed to hot or cold temperatures. These symptoms can sometimes worsen to include trouble walking or holding something in your hands. You will be watched closely for these symptoms. Let your doctor know right away if you notice any of them. If your symptoms are severe enough, this drug may need to be stopped or the dose reduced until they get better.
This drug may increase liver enzyme levels in your blood. Your doctor will likely check your liver function with blood tests on a regular basis. The drug may need to be stopped if the changes are severe. If you have liver metastasis or other liver problems before starting treatment, the doctor may need to monitor you more carefully.
This drug can cause a condition known as hand-foot syndrome, in which a person may experience pain, numbness, tingling, reddening, or swelling in the hands or feet. Peeling, blistering, or sores on the skin in these areas are also possible. Let your doctor know right away if you notice any of these symptoms.
Your doctor will likely test your blood frequently throughout your treatment, looking for possible effects of the drug on blood counts or on blood chemistry levels. Based on the test results, you may be given medicines to help treat any effects. Your doctor may also need to reduce or delay your next dose of this drug, or even stop it altogether. Be sure to keep all appointments for lab work and doctor visits.
This drug can lower your white blood cell count, especially in the weeks after the drug is given. This can increase your chance of getting a serious, or even life-threatening, infection. Be sure to let your doctor or nurse know right away if you have any signs of infection, such as fever (100.5° or higher), chills, pain when passing urine, a new cough, or bringing up sputum.
This drug may lower your red blood cell count. If this occurs, it is usually a few months after starting treatment. A low red blood cell count (known as anemia) can cause shortness of breath, or make you to feel weak or tired all the time. Your doctor may give you medicines to help prevent or treat this condition, or you may need to get blood transfusions.
In rare cases, this drug may lower your platelet count in the weeks after it is given, which can increase your risk of bleeding. Speak with your doctor before taking any drugs or supplements that might affect your body’s ability to stop bleeding, such as aspirin or aspirin-containing medicines, warfarin (Coumadin), or vitamin E. Tell your doctor right away if you have unusual bruising, or bleeding such as nosebleeds, bleeding gums when you brush your teeth, or black, tarry stools.
Do not get any immunizations (vaccines), either during or after treatment with this drug, without your doctor’s OK. This drug may affect your immune system, which could make vaccinations ineffective, or could even lead to serious infections. Try to avoid contact with people who have recently received a live virus vaccine, such as the oral polio vaccine or smallpox vaccine. Check with your doctor about this.
Possible side effects
You will probably not have most of the following side effects, but if you have any talk to your doctor or nurse. They can help you understand the side effects and cope with them.
•low white blood cell count with increased risk of serious infection*
•retaining fluid (may include swelling in hands or feet, shortness of breath)*
•hair loss, including face and body hair
•low red blood cell count (anemia)*
•stopping of menstrual cycles (periods) in women
•rash, which can be severe
•allergic reaction (fever, flushing, itching, rapid heart rate, shortness of breath, throat swelling, dizziness)*
•numbness, tingling, or pain in the hands, feet, or elsewhere*
•weakness in the hands and feet
•sores in the mouth or on the lips*
•change in how things taste
•loss of appetite
•nails changing color or becoming brittle
•abnormal blood tests which suggest that the drug is affecting the liver (Your doctor will discuss the importance of this finding, if any.)*
•low blood platelet count with increased risk of bleeding*
•redness, pain, swelling, or blisters on hands or feet (hand-foot syndrome)*
•muscle or joint pain
•shortness of breath
•excess tears from the eyes
•darkening of skin where prior radiation was given (radiation recall)
•death from infection, bleeding, or other complication
Tuesday, August 10, 2010
Insomnia is a cruel, cruel lady. I imagine it as a lady because I feel like a "lady" can be peachy-keen to your face, then stab you in the back when you turn to leave.
I am visiting Okanogan and staying at my moms for a few days. I wasn't sure I was going to be able to make the trip because I haven't had a free weekday in the last two months, but we were able to work it out. It has been great to see family and just relax on the couch and watch the river...and let's be honest, some TV.
I slept the entire ride over on Sunday, except to wake up to eat a cheeseburger and fries, then back to dreamland while my mom safely maneuvered crazy Sunday summer traffic. The sleep helped me recuperate quite nicely from my "chemo sucks" party the night before. Surprisingly I didn't get sloppy drunk (not that it's a habit, but I am highly emotional and hadn't had a jello shot in many years) and was able to take in all the positive energy of those around me. It was such a great patchwork of people from all areas of my life, present and past. To those of you who were able to make it, and on such short notice--thank you from the bottom of my heart. I don't think there are words to describe being able to be surrounded by love and even though it was a party because I was starting chemo, at the time I forgot I had cancer. I was so in the moment talking to everyone that I forgot to worry. I was able to be present, in the moment, and laugh and hug--and I only cried once, and it was for a damn good reason (thanks Jennifer!). I know that the party put me in a better place to begin chemo and reminded me that I am not going through this alone.......
I meet with a physical therapist and nutritionist on Wednesday. I find it humorous that I meet with a nutritionist when there is a high likelihood that I won't be able to monitor most of what I eat, and it will be small amounts of saltines and Ensure that sustains me. Also it makes me sad, because this was supposed to be the summer I took care of myself. Since I met Scott I have probably put on a good 35 pounds--and yes I know he is a keeper for many reasons, but #1 he met me when I was "skinny" and married me when I was my heaviest and #2 he is pretty much all the best emotions and caring instinct a person can have rolled into one person. And he has never mentioned the 35lbs.....and we all know he noticed. So I was going to work out, eat better and not worry so much about the scale, but just feel better about myself. I told people about it, so once you tell people it's like a verbal contract, now it is an obligation.
People gain weight for various reasons, mine probably had something to do with the french fries and mayo I ate in college coming back to haunt me in adulthood. I lost my dad which was the hardest thing I have ever went through and embraced stress eating for the first time--and copious amounts of beer (welcome 7-10 pounds), I went to graduate school (hello more weight), and through out the process of working, getting certifications, and stress eating--well here I am. And instead of working out and getting "fit" this summer--I got cancer. Life's a tricky bitch.
Now I am forced to take care of myself in a completely different way than I had planned. And I think I have probably gained 10 more pounds due to stress eating and retaining water in the last 2 months alone. Goodbye self-esteem, hello pity party. I am a stress eater, and I have found that it is hard for people to tell someone with cancer "no", so I have been eating pretty shitty the past few months. Exactly the opposite of what I want to do, I should be working on getting myself in the best health possible before chemo......... Too late now, so I am just going to roll with it (chubby pun intended).
Scott recently said to me "I wish you were healthy" (not referring to cancer) but referring to the fact that he wished my stress eating was a spinach salad, not a meatball sub. I was upset for awhile, my self-esteem being in the negative and mulled it over for a few days. Then I realized he was right--I wished I was healthy too....I wished that I had the dedication that I put into my professional life into myself. That I had acted on the intentions sooner--but once you hit a wall, it's really hard to get over it.
Being chubby will give me a reserve for when I start chemo, so there is a light at the end of the tunnel. There is an increased chance that I will maintain a "healthy" weight which helps keep my body in check when my immune system is non-existent. Cancer has forced me to take many, many hard looks at myself in the mirror mentally and physically and overall I like what I am seeing. My motivation has veered slightly, but has remained pointed in the direction of self-care.
It is frustrating and exhausting to worry about what will happen in the next 6 months. To lay in bed wide awake running scenarios through your head, worrying about others worrying about you, and any tiny detail that I can ruminate on for a few hours is taking precedent over sleep. So I get out of bed, and blog a bit, hoping that releasing some emotion will be like warm milk.........cheers.
Thursday, August 5, 2010
Well I have been to work the last three days, wahooo! It has been a breath of fresh air and has given me something to do. I went to do some shopping for the party on Saturday and it was twisted. I bought pink decorations, a shit pot of beer, a multi-daily 4x pill container, a ear thermometer, hand sanitizer, and some other things. The checkout woman asked if I was throwing a party, I said yes. Then she asked if I took care of an elderly relative, I said no. She asked what I was doing and I said "well I have breast cancer and am throwing a party, and I am getting things gathered for when I start chemo." She said nothing...not even have a nice day......
I love parties. Throughout my life there has been many different definitions for what I would call a "party"--all fun and in my life for a reason. I enjoy the commotion of people, new connections, hugs, and getting to catch up on what is going on with others. A lot of "parties" in my past I don't remember---those parties weren't necessarily in honor of anything. History of parties with too much alcohol aside, I love parties. So, tomorrow I am having a party. A bitter-sweet, kick-in-the-ass, slap-in-the-face kind of party. I get to see lots of people that I love, newly in my life and the long lost. I get to laugh, smile, hug, and I am sure shed a few tears. The problem is that it's not like I had left the country and just came back from a trip, or had a baby, or some sort of happy life changing event--it's not even a game night for god sake. It's because I have cancer, it's because I am sick, it is because people feel sorry for me, because people don't know what to do, because people need to see me in the flesh to know that I am still ticking, it is because I have to have chemo, it is because my life has been ripped and stripped of security.............it is because I will be so sick in the future that I won't be able to be around people. I will be isolated (literally)----alone with cancer.
Despite the reason for the party, I am really excited. Take a last look at me with hair because soon it will be gone. Take a picture of me smiling because soon my eyes will be sunken in and tired. Hugs tomorrow because soon my joints will be too sore to touch, spend time with me now because soon I won't have the energy.
The next 6 months are "trial and error" and I get to be the guinea pig. I never liked guinea pigs--they have weird little fingers....I guess I will learn to adapt, it's not like pin cushions are all that neat and I have been one for over a month...
On a more medical note--I have my PET scan scheduled for next Friday, my lymphedema therapy and my chemo teach. I am heading home to visit family after the party for a few days--then back to Tacoma for more tests........
Cancer has taken over my schedule--but not my life.
Monday, August 2, 2010
Whew, another day of being a pin cushion behind me. Because I had the lymph nodes on my right side removed I can't have any injections, pokes, or pressure. That leaves my poor left arm to provide veins--apparently not an easy task. I had my blood drawn when I first got to the hospital (vein #1), I then went for my MUGA and had a radioactive marker injected (vein #2), then after a half hour had an injection of a radioactive substance (vein #3). When I arrived at day surgery for my port insert I was sure to remind them (kindly but firmly) that you can't poke or take my blood pressure on my right arm--and veins are hard to come by on the left. As a result vein #4 was poked (after 15 minutes of having the elastic on my arm and the nurse saying "really hard to find anything here, hope I don't poke a tendon") and I had an IV inserted--after blood squirted everywhere and pooled next to my ass on the gurney.
Conscious sedation doesn't work when you have the adrenaline of a race horse. I was anxious because I hadn't had anything to eat or drink since the night before and it was already 3:30pm. I thought I was going to be mostly asleep, so when conscious was mentioned my anxiety spiked, and never went down. I was given "a lot" (according to the nurse) of medication but was still awake, crying, and talking throughout the port insert. Everyone was extremely nice and supportive, except the nurse who put some sort of metal instrument on my face over the sterile drape without acknowledging it happening or that I was terrified. It is crazy how disengaged people become once the "patients" face is covered.......
Here are some of the quotes from medical personnel:
"Oh wow..........how does a nice 26 year old have cancer?"
"So how did you find out? I mean I am terrified to even think of it."
"I always freak out if I feel something different, I would just hate having breast cancer."
"Just breathe through this, the port is the easy part--remember you have to do chemo, that should invoke anxiety"
"26.......huh, does it run in your family? (no) WHAT?! That really is too bad."
Dear medical professionals--please shut up, stop tilting your head feeling sorry for me, stop patronizing me because of my age, stop projecting your personal concerns onto me when/because I am already vulnerable, embrace that I can make my own decisions, and don't give me unsolicited personal advice, or tell me how you would be dealing with it.
I find myself tearing up when professionals treat me as me--not as breast cancer. The doctors support staff that were there for the port placement did as such. They know I have cancer, they know I am getting a port for chemo. No one asks "why/how/what are you?" in a way that makes me upset. They look past the cancer and look into my eyes, take me seriously, and are supportive without being offensive. After recovery I had a nurse who was spectacular. I wasn't drugged up (see above paragraph regarding adrenaline), he asked how I found out that I had cancer (his aunt was diagnosed recently) and said he was encouraged by my strength. He said bad things happen to sweet people, and that the way I am handling it seems extraordinary. I told him it was because this stupid port was the last medical thing I had to do before chemo, so I was relieved that procedures were done.
Now I am home, swollen neck, more pain meds, and a port owners manual....
Sunday, August 1, 2010
update: 12 eggs fertilized---these embryos are now on their way to Reno where they will be frozen for 5 or so years.....
What do you do when your rock rolls? When your foot in the past is shaky and making your future unbalanced? What happens when a relationship built on trust, honesty and deep commitment is pulled, tugged, stretched and given cancer? This. Life happens. Cancer happens. Not just committed relationships (white dress, lots of beer, vows of some kind, relationship) but relationships of friendship, of family, of people you just met; touch their lives and you are now connected--bonded by cancer.
Cancer brings people together and pulls people apart. Cancer is not only a toxin for the body (my body) but a filtering system making its way, slowly and surely into every aspect of my life, every relationship, everyone I meet............
cancer, cancer, cancer, cancer.........no matter how many times you say it, it doesn't get better, easier, or more fun. Actually I think it gets shittier....the more support and help I need, the harder it is on those around me. The more severe the diagnosis, the harder it is on others. Though I have found that for some it is a nice distraction when it is convenient for them---if it is convenient to be distraught, then they are there--but if becomes a hassle or there is no attention for them, then cancer isn't such a big deal after all.
Times are tough, I get that. I have cancer, I get that too--but what I don't get, or understand is how to play the cards I am now being dealt. How do I incorporate other players in this game? How do I gain some control? Do I forgo all control? Do I hold on tight to the past, what I was dealt previously? Or do I play them as they are dealt? I wish it was all just easy questions about cards that could just be answered, I also wish my dad was here to tell me when to fold--I can be stubborn, I play to win, take no prisoners and lead by my gut (a lot like him).
I am disappointed. Disappointment is much more infectious than anger. I can't just throw something, hit a few melons, or burrow under the covers to make it go away. I find when I wake up I am still disappointed. I have been stripped of a lot of my security and walls in the last few days and not sure what to do, I am grasping at those damn straws that seem just out of reach, not to mention not strong enough to begin with. It is a scary predicament when you feel your rock is just a bit out of reach...especially when you are purposely rolling it away.
Relationships (look for an extended chapter in my book) are strained. Mine is currently. The amount of stress that has been dumped on our happy marriage is insurmountable, I get that. But despite the shit and pain, I still have cancer, still have to do chemo, still have to fight daily to lift my head off the pillow and think of a reason to get up, get dressed, and not cry over coffee, over lunch, over dinner, and throughout the night. I am still a pin cushion who is going to be given a "trial and error" next 6 months. I, along with many others, had the rug pulled out from beneath my feet and landed face first.
I am hurt and upset, and I have medical stuff tomorrow--scary sedative medical stuff. I will be having my MUGA scan to see what condition my heart is in and also a day surgery of having my chemo port put in.......looks like lorazepam dreams it is.