from ER to home--my 5 day journey

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.

"look mom, no mask!"

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!

home sweet home

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.

hospital insomnia

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".

from 1100 to 325...

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!

magic mouthwash

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.

a week since 1st chemo

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.