Surgery - Tale Two

My lumpectomy was supposed to be a later in the morning surgery, which was nice since we had to go to Idaho Falls for that one and the weather was not cooperative.  But the day before I got a call telling me to be there by 6am.  I called my trusty friend Kara, and she once again came to my rescue and took me, waited with me and brought me home. 

Well there was a lot to do before I could even get to surgery. Turns out the first stop after getting the IV in was to Nuclear Medicine where I had radioactive stuff put into my left breast.  It stung really bad and I had a nurse there holding my hand for it.  Then they took some pics with a big machine and sent me on to the ultrasound lab.  There I got a metal rod placed through the tumor via ultrasound guidance.  Then to the mammography department to make sure they did it correctly.  I was in horrible pain by this time.  I had my previous surgery just a week before and I was not allowed to take anything after midnight, so all my pain meds had worn off and my hysterectomy incisions were hurting A LOT!  My gurney was extremely uncomfortable and my poor bottom got tired of sitting, but just shifting to another position was bad, so I held pretty still. We went to preop and waited and waited and waited, I kept hoping they would just come put me out of my misery.  I was so grateful for Kara being there. Again, she made a difficult situation fun.

My funny story from this surgery is that I remember waking up and looking around and I could not see a thing, everything was far too blurry.  I closed my eyes and tried again. Without a word a nurse came and wiped my eyes and suddenly I could see again. In my drugged up state I thought, "Oh, I was crying, so that was it".  When I went back to my first room to get ready to go I went into the bathroom and looked in the mirror. I had a big circle of something like Vaseline around my eyes. I had two white spots on my forehead from some kind of monitoring and apparently breast surgery required oodles of orange betadine be used to clean half of your face as well as your chest.  I looked like a clown. I was just glad I saw it before I got home! No need to traumatize the kids further.

After surgery it did not take me long to be discharged and home we went and to bed I went.  Lucky for me Adrienne and Jon moved back to Rexburg the next day and they stayed their first night with us.  I was so relieved, because it was New Years Eve and I was NOT going to stay up until midnight.  As it turned out, Joseph went to a friends party and got home around 10:30 and went to bed.  Annalina went to her first church dance and got home after midnight.  The rest of us went to be before the ball dropped and that was just fine with me! 

I am pretty good at taking care of others when they are sick or need help, but myself?  Not so much.  After two days of pain meds after surgery number 2 I figured I had been on them long enough, so I stopped taking them. Ouch, big mistake. It took me another day or two to get the pain back under control.  Christmas break was a blur, it seemed like before I knew it, the kids were going back to school without me. 

Little did I know at the time, that a third surgery was looming in my future.  More on that later!

A Tale of Two Surgeries - Tale One

First a word of advice, don't have two surgeries within a week of each other.  Unless of course you have met your annual out of pocket max and the second surgery will be completely paid for and you just don't have a lot of extra money laying around with which to pay for surgery!  Then maybe you should do what I did! 

Christmas Break was somewhat of a blur to me.  I went in early on the 22nd for my complete hysterectomy. My friend Kara picked me up and was there with me before and after surgery.  We had a little time to wait before surgery and she helped make it fun!  I had great nurses.  I stayed the night in a beautiful room with a wall full of windows.  I had a great view of Main Street Rexburg and their gorgeous Christmas Lights.  It also snowed a lot while I was in the hospital and I loved watching it from my room. I got a wonderful drug called dilaudid. I wish I could have kept my IV and been given a bunch of that to take home. Good stuff.  At about 10 that night I got up to walk around for the first time.  It went ok, not as painful as I had expected it to be.  Just a half hour later I had to push the nurse call button because my chest hurt so bad I could hardly breath.  More dilaudid and I was feeling much better.  Turns out all that gas used in laparoscopic surgery does not leave your body once surgery is done.  Some of it hangs around to cause issues.  Getting up and walking had sent it up to my chest where it really, really hurt.  An hour later that pain was back, but the nurses were great about helping me get it under control.  Later a nurse brought in a beautiful vase of yellow roses with gold painted fern leaves.  It looked great next to the beautiful roses Kara had brought me.  So lovely. The nurse told me there had been a wedding reception that night and they had brought their extra flowers to the hospital for the nurses to give to patients.  How sweet and what a wonderful idea!  She also said my room was pretty sunny, because of me, but she thought I would like them.  What a nice thing to hear!  I try to be nice to everyone.  I try to be extra nice to those who are working so hard to help me be ok.  It turned out my nurses and I were a great match personality wise.

Funny story, I always ask my surgeon, "have you ever lost a patient during a "insert surgery here"?  And they always say no, but my hysterectomy doc said no, but he had heard of patients dying from falling off the OR table and hitting their heads.  So, they gave me the loopy meds and wheeled me to the OR.  It was me and one nurse and she asked if I could scoot myself over to the operating table.  I said, SURE!!  And as I scooted, the gurney I was on began to move away from the OR table and the nurse panicked and grabbed me.  I thought, in a totally calm tone of thought, "So this is how I go!".  But we managed to save me from falling.  That is the last thing I remember. I bet they are hoping I don't!  heehee

The next morning my surgeon came to see me.  I was pretty out of it.  He suggested I have a blood transfusion, because not only was anemic to start, but I lost some blood during surgery.  I remember thinking how bad transfusions could be and no way was I going to get one.  Now I must say, I don't have a problem with transfusions, nor do I understand why it was an issue for me at the time, but I said no.  I remember the surgeon saying if he had my blood levels, he could not function.  I remember vaguely thinking, that's because you are a man.  I know, I am so bad!!  So why was I given the option?  Without my advocate/friend there?  Who knows.

I went home the following day and once again my dear friend Kara came and got me. She is such a blessing to me!  It was so good to be with my kiddos.  They had come to visit in the hospital but only stayed about 8 minutes total.  I think it was a little worrisome for them to be there.  My kids don't talk about their fears much, but they certainly have them. And who could blame them?  They have been through so much!

I came home from the hospital on the 23rd and struggled to keep my pain levels under control.  It was exhausting and my kids didn't see a whole lot of me that week.  I was in contact with the on call nurse through Christmas Day.  She was good at suggesting things that might help.  Christmas morning the kids woke me up and we opened gifts. It was fun, most of them were from outside our home, so it was a nice surprise for me to see what everyone got too!  And then I went back to bed.  What is funny to me is that a few days later as I was cleaning up from Christmas, I went through my gifts, and it was like seeing them for the first time!  Turns out I didn't remember much from Christmas morning. I will write more about our Christmas later, because we had so much to be grateful for this Holiday Season. We were certainly in the prayers and thoughts of so many.  We were also the center of many acts of kindness and we know that we are truly blessed.

Surgery two, up next!

The Truth about Chemo...

...what I've learned so far.

I have breast cancer.  I was going to be a model patient and handle this with grace and dignity.  But why lie about it?  If my "real" journey can help someone else to feel they aren't going crazy, then I am all for that.  The cancer is not so bad. It didn't hurt me physically until it was time to do something to get rid of it.  Surgery, hard.  Recovery, not a lot of fun, I mean really, 6 weeks wearing a bra constantly??  Gets a little old.  Chemo?  Yeah, I was going to breeze through this treatment like it was nothing. I was going to rejoice in all my bald beauty. ha  The sad truth, this SUCKS! And I am not even a full week into it.

I try to stay positive and I know in the end all will be as it should, but there is no breezing through chemotherapy.  I've spent more than my fair share of time huddled in as close to the fetal position as I can get, just crying from the pain.  I've had nausea, a bright red face for days on end, severe joint pain, exhaustion beyond measure, diarrhea which led to hemorrhoids, weird little rashes breaking out all over my body and a white pasty film all over my mouth that feels gross, tastes gross and is just plain gross.  I have sores in my mouth and it hurts terribly to swallow, and Sunday night I ended up in the emergency room with a fever and severe pain. Turns out it was probably just the chemo effects, but they told me to go so I did. I felt really foolish the next day when I went in for the advised follow up at my oncologist only to have the PA say, so why are you here? He didn't even look at my file before walking through the door. He thinks I am crazy, or a big baby, but it turns out when you tell me warning signs, I am good at paying attention and reporting on them.  And when your oncologist tells you to get to the ER, you don't ask why, you just go.  My ER doc said it was something that could go bad real fast.  Not the kind of news you want to hear, but at least it seemed like he took me seriously.

Tomorrow is my NADIR day. I get to go in and find out just how low my white blood cell count has become.  It should be at its lowest and this will tell us whether I need another fun treatment called Neulasta.  I am concerned that what I am experiencing is something more than chemo effects, because I am not sure how a low white cell count will affect me fighting off an infection. But we will take that step as needed. And I suppose if the oncologist office isn't concerned, maybe I shouldn't be either.  Except, I am!

I don't want to whine the whole post away, so I will share some good news.  My sister Megan and my mom are coming to visit me this weekend!  Yay!  I am so excited!  My little family and I have done well muddling through the past few months, but it has taken a toll on my kiddos. It will be wonderful for them to get some good solid family time and to feel much needed love from grandma and auntie Megan!  And it will be so good for me to see my sweet extended family!  I need to get rested up so I can enjoy every second!

Another plan!

Richard always told me I was a planner. I just feel so much better when there is a good solid plan in place.  I have been frustrated at times by the unknowable nature that is the cancer experience.  But, after many appointments and testing, we have a plan! (The plan is explained in the final paragraph in the event you want to skip the inbetween part of the story)

On Friday the 22nd, the anniversary of Richard's death, Annalina and I went down to Salt Lake City to the Huntsman Cancer Institute for a second opinion. It was a long difficult drive because I have been so anemic that I tire very easily and Jeep, bless her little battery, does not have cruise control.  But Annalina kept me awake and we had a fun drive there.  She also navigated me through the city to the institute which sits up on the base of the mountain.  It was beautiful with a glass front overlooking downtown Salt Lake.

We pulled up and they offer free valet parking, so Annalina hopped out and I had enough brainpower to grab my purse really quick. But after they drove away to park(or go off-roading, after all, the mountain was just right there), we realized we had left Annalina's things to keep her busy inside Jeep.  I wasn't about to ask them to bring Jeep back so we went exploring.  I got tired quickly and we went to the gift shop where we found a fun adult coloring book, but I am not so comfortable with that name, so at Adrienne's suggestion, we now refer to them as advanced coloring books!  heehee

Annalina had fun coloring and waited very patiently with me.  She cheered me up when I got a little blue and I was so grateful to have her there with me. 

I met with an oncologist who was very kind and very thorough with her explanations. She spent a couple hours with me walking me through everything from the beginning and all possible treatments.  She told me my first opinion was sound and sent me on my way. It was good and I felt empowered with knowledge.

We drove to the hotel that I had booked with the hospital discount.  The desk clerk asked for a note signed by my doctor and I lost it, I just started sobbing right there in the hotel lobby.  Somewhat embarrassing, I can tell you.  I had spent so much energy keeping it together all day that the dam just broke and I couldn't contain my emotions anymore. Annalina helped me pull it together and the clerk said it was okay, I could have them fax something over.  I cried some more as Annalina helped us find our room and got me settled down.  I did get the social worker at the hospital to fax over proof of our appointment.  Later when it was dinner time Annalina went down to the lobby to ask for delivery menus, I was too embarassed.  She was such a wonderful companion to me on such a difficult day.

The Monday after we got home I learned that my cancer is moderately aggressive.  My local oncologist recommended chemo, radiation and anti-estrogen treatment.  The very next day Adrienne took me to the local day surgery place and I had a port installed in my chest for treatment.  Adrienne was so good to go along, even though it was early. She got a little woozy when they tried to put in my IV, so she got carted away in a wheelchair to enjoy the rest of the morning with juice and string cheese! 

This surgery was the quickest and easiest for me, about 3 hours total, but the recovery has been really rough.  The port is very painful and even something as simple as rolling over at night causes a lot of pain. I have struggled with controlling the pain while trying to have a life.  I get up, pain med free, go run errands or do things around the house for a very short while, feel enough pain to stop and take something, then I sleep for a while. I never feel rested.  Not a fun cycle.  I don't recommend three surgeries within 5 weeks, my poor hair is falling out like crazy and I haven't even started chemo yet!

Insurance has been an issue, they did not okay the chemo last week when I thought I would be starting, and they will not cover the IV iron I need to overcome this anemia, so I will be getting a blood transfusion tomorrow and will meet with the PA who will teach me all there is to know about chemo.  Then Wednesday morning, at 8:45 I have my first chemo treatment. I am not entirely sure how this will affect me, but I am prepared to find out.  It is a good feeling that things are getting going again and that I am one step closer to being done with this chapter in my life.