WHY would I put myself through this?

Yea, that HER2 thing makes for shorter conversations.

Left breast only -- well, I hope so as the right one is still with me.  

I've concluded that pathology is far more nuanced than I thought, which suggests I ever thought about it which I didn't.   I believed it was black and white.  "I have ER/PR- DCIS and I know this because it says so right there in the biopsy report."   

My final pathology report is four pages long with a one page addendum. The pathologist and the oncologist don't use the word tumor -- both use "pattern."  I don't know if that term is generally applicable.  The invasive "pattern" is against a background of DCIS specifically and general atypia of different types throughout the breast.

Did I mention I hung onto my right breast?

The HER2+ cells divide at a frantic pace so their nuclei are disorganized, volatile and variable. Like a bunch of tequila shooting teenagers at a party where the parents are out of town, they indescriminately procreate.  The HER- cells are buzzed but chill unless something ticks them off. The DCIS gang is hanging on the couch watching the game.  The behaving cells are taking a long weekend away from the kids in Vegas -- so they may get into trouble too.  

Hmmm...all of my metaphors involve parties. 

I had in my mind a distinct mass that measured X by Y and I am sure there are breast cancers like that, where you cut it distinctly out.  

My impression is that my cancer looks a bit like Van Gogh's Starry Starry Night where the gradations are pervasive and bleed into one another.  

I am absolutely getting a port -- for some odd reason, I never considered otherwise.  Maybe it is because I don't want to look down at my arm and be reminded of this for the rest of my life.  For me, the prospect of being stuck and stuck, then stuck again is far more terrifying than a port.  

Got through my first chemo Wednesday, Cold Caps and all.



Felt ok Thursday then kind of crummy yesterday afternoon then last night - I have no words. Projectile vomiting and constipation that had me curled in a ball whimpering then explosive diarrhea, so weak all I could do was lay on the floor in a puddle of excrement, vomit and urine for hours, freezing. I couldn't keep anything down long enough for it to make a difference.



It was the most horrible, painful, humiliating, degrading, nightmarish night of my life.



I am PISSED OFF. My oncologist promised me that no one got sick like that any more. I got something called in at 8 for the constipation after BEGGING - the on call doctor wanted me to continue with the OTC's I had been taking since three days before chemo started, plus more yesterday. I had no way to pick up anything after that.



I took all my medicines religiously - set my phone alarm for the anti nausea stuff which, after I started throwing up, instantly made me vomit even harder.



I can't do that again. I just can't. I'm still too weak to walk to the bathroom - have to crawl. My husbands was out of town last night and came back to take care of me, but I can't eat anything - food is just fuel for the digestive explosion of last night. And I'm mortified that he had to clean that up but I just couldn't.



I can't stop crying - I feel so horrible but I don't think anyone or thing can help me. The doctor called in Zoffan, but I think I'm too scared to take it.



I don't want to scare anyone off of chemo but there is a reality beyond flu like symptoms.



I'm so upset.

I am feeling better after sleeping for over 24 hours. Have had a piece of toast since Friday morning that I picked at most of yesterday. I am terrified to eat anything for fear it will cause the volcano to erupt again, and with that statement I am again sobbing.



I laid on feces covered sheets for hours after my husband got home waiting for him to leave long enough for me to change them. I can't express how horrible the prior night was - all other issues aside, my sweet 16 year old son would knock from time to time saying "mom, please let me help you." I am so ashamed.



I can't do that again. I just can't. My husband says next time I will have the right drugs, but why in God's holy name would I trust them? I could not have been more clear before - does laying in pools of my own waste entitle me to a higher standard of care?



I think I have PTSD.



So, for Mrs. BlairK and anyone else considering chemo and for my own cathartic purposes, here's what happened. Caveat emptor.



The THC was last Wednesday at 11. Per my instructions, the prior Friday I picked up the prescriptions that were called in. At no time were the drugs or their side effects explained to me. I got generic Xanax, generic compazine and a steroid. The Xanax and compazine were to be taken every X hours as needed for nausea. The directions on the steroid were for one full tablet morning and night for two days then one half tablet morning and night for two days.



No start dates was given on the steroid so I emailed and called the nurse to confirm that I was begin the following day, Saturday, and take the four days leading up to the Wednesday chemo. I did not hear back, so that is what I did. I was up, bright and early, chipper as could be at 3:00 Monday morning, a side effect I expected. Mid morning Monday, she called and sits "no, no - you are supposed to start the steroids the day after the treatment."



Oops. Oh well, no way I could have known that. And no way I could have known steroids cause constipation. Or a steroid crash. Or weepiness. Because nobody bothered to tell me.



So I went to treatment madder than a wet hornet sobbing like a two year old having not used the restroom since Saturday. I started all the anti-constipation stuff on Monday, but I guess it was too little too late.



I noticed during my treatment that my anxiety level was still sufficiently high to power the electricity needs of a medium sized city, and asked about the Atavan pre-med I expected. It turns out thet don't just give it to you - they dont even offer it to you. You have to know enough to ASK for it then your doctor has to order it then they give it to you. And asking for it means specifically saying "I Want Atavan" - it is not enough to tell your oncologist's nurse that you are terrified or appear for treatment with eyes swollen from sobbing, silent tears streaming down your face and shaking all over like a leaf. An actual human being would hlep you if they could - but not a chemo nurse.

I was surprised you have to ask for Atavan as I thought it was for both anxiety and nausea. Things went much easier after that started, which started about half way through.



I took my compazine at the beginning of chemo and as ordered thereafter and felt ok through Friday afternoon when I started feeling the constipation cramps getting progressively worse. I consulted Dr. google and discovered that 6 days without using the restroom is a respectable time to call the doctor without being a whiner, so I called at about 2 in the afternoon. I made the fatal mistake of admitting there was an OTC remedy I hadn't tried (Mirulax) so agreed to try that and call back the next day if it didn't work. That nurse could not get off the phone with me quickly enough.



By 7:30 pm I was in the lovely position of sitting on the potty with nothing happening throwing up in the trash can between my feet. I know enough to know that once you start throwing up, it's very difficult to get under control but the abdominal cramps from the constipation were so excruciating I hardly noticed the vomiting. Called the after hours line and by BEGGING got them to call in Lactulose, a prescription anti constipation drug. My son drove me to pick it up (he's got to get his license!), and I managed to only throw up outside the car (yea me!). When I got back, I got in a hot bath which eased the cramping a hair. I knew I was leaking fecal material into the water, and tried to keep my mastectomy incision dry but was really past caring.



The Lactulose kicked in ... when? Could have been one hour later, could have been four, and despite the utter grotesqueness of it, it was a relief. I had no hope of getting to the toilet, so i just laid on a towel and the bath mat and gave up. At least for a while after every explosion I felt better even if I was laying in my own filth.



By the time my husband got home mid morning, I had cleaned myself up some, and was in the unbeknownst to him soiled bed, and had cleaned at least some of the filth in the bathroom, stopping each time I vomited again. Later in the day (I totally lost track of time) I spoke to the same on call doc who I talked to the night before who did not remember me. "Well, I guess we could try Zofran- do you want me to call that in?" Nah - lets just have a nice chat and get to know each other until I can get this gun loaded properly and placed up against my temple.



That was a joke.



Just ate an egg and a piece of toast and drinking a real Coke, bracing myself. Took Zofran with it - I assume I just take that and not that plus compazine, but heaven forbid I be given such specific instructions when it is so much fun to guess. Xanax next then hopefully sleep and if all goes well, I will regain my desire to live.



I won't do that again without meeting with the oncologist personally (she is no longer "my" oncologist) - and screw her grossly negligent nurse. My husband is already starting with the "nice, nice" - "of course you will do the right thing - you just need the right drugs! And next time you will have them!"



Rubbish. Horsefeathers. I was supposed to have them LAST time - what's going to be so different?

I'm truly, truly stunned as well. I think it is the trial lawyer in me that I get so incredibly angry when someone talks a good story and I buy into it hook, line and sinker, only to find out later I have been sold a bill of goods.



I totally believed Dr. O'Shaughnessy - both her express representation that I would not endure what I did and the implied statement that she would do what she could to prevent it and, if necessary, fix it. She has both the credentials and the persona. I don't trust easily and I don't deal well with being tricked. Regardless of how the rest of the world might view it, I blame it on myself - I should have known better and run - not walked - RUN away. I had that experience Friday night because I failed to suss out the truth and character of those I was dealing with. My bad.



I'm one of those people who would rather be dead than feel foolish so I am careful to never overstate the situation. The on call doctor was palpably indifferent - I mentioned constipation so I guess the fever (100) and vomiting (constant) were irrelevant. I don't think it is my job to bring those things up, and frankly I was scared if I didn't stay on track she would tell me to take more Metamusil or Miralax or Milk of Magnesia and refuse to help me. And I am convinced that given half a chance that is precisely what she would have done. I couldn't risk muddying the waters with nausea and fever (and let's not mention the bone pain yet....)



I'm not quite sure what to do. Do I cancel the remaining appointments and start looking for someone else? Do I go talk to her before the next infusion, assuming I can get an appointment? Or do I call it a day and blow the whole damn thing off - there is no compelling evidence that my cancer needs adjuvant treatment of any kind - what does seem clear is that If you are only going to do one, Herceptin is it.



Oh dear .... Throwing up again.... Here I go.....