Sunday, December 26, 2010

The Effects

You think you are prepared, but really, you aren't. Kind of like when your dog dies of old age, you know it's coming, you know its best, but it hurts anyway, kind of the same thing..... maybe....

So, really this first session of chemo went rather well. Got a little sicky, not bad, just kept taking my anti-nausea medicine and felt pretty good. Very lethargic, not a ton of energy, takes a bit to get it all in gear, but this is something I have been used to since this whole thing started - also hard to get in gear when you hurt all over. I am past the hurt all over stage and now just chemo..... wonderful really.

In the beginning I got the really sore fingers, almost like they all were smashed at the exact same time and it hurt to grab stuff, type, touch, everything. I am 2 weeks and four days out and it is fading. My tounge also became very numb on the end which was very weird, almost like I had burned it really bad on that hot cup of coffee - oh no, just chemo..... hahahaha. My face started to clear up too which I was highly grateful for since somehow I was experiencing more zits than I had in high school - that is stupid. Chemo just dries you right up, yeah for that.

But then there is the part you know is going to happen, everyone tells you, you prepare yourself, thought I had.....nope, no such luck, sobbed like a baby - my hair.

We went and saw my doctor on Thursday, the 23rd, and she said I looked great, still had all my hair, how long has it been? She said it is about day 16 that all the hair starts to fall out. I thought, great, today is day 15. Well, yep, that night, there I am in the shower and I wash my hair, pull my hand down and it has so much hair in it. Didn't really think that much of it, but ran my hand through my hair again, and again, hair. I yelled for Jeremy, "It's really happening....." And you can't help but feel as if you lost. I thought I might be the one that didn't lose the hair, that kept it for the entire process - not this little grasshopper. What a bummer.

I just sobbed and Jeremy kept reassuring me it was going to come back and he held me. He did great, but no matter how much you tell me it is going to come back, it doesn't stop it from happening now. There are no rational thoughts in your brain in a time like this, just what is happening right now, in the moment, during that minute. Nothing else matters. My hair mattered. Looking back now, earlier that night, we watched a movie and my cat, Gypsy, was on my lap, and I was getting very annoyed with all of her hair in my face and was constantly brushing my face. When I pet her I was throwing the hair off my hand onto the floor, BUT thought it rather odd that there was no hair, but kept right on thinking it was her. Hmmmmm, start over, it was my hair falling out. Well, it was late, we went to bed, but I didn't sleep, too busy worrying about waking up in my hair on the pillow.

Got up the next morning, forgot about my hair for a minute, ran my hand through it and there it was - a handful of my hair staring at me, taunting me, daring me to do it. "Jeremy, lets do it now, I can't be cooking and moving around with all of this hair coming out everywhere." Borrowed the clippers from the next door neighbor, sat on a chair, and Jeremy shaved. I don't have a completely smooth head yet, the little hairs will eventually fall out, but at least I can say I have a nice round head.... Jeremy tells me it looks good and I should stay bald all the time.... maybe.....uhhhhh... not a chance.

You think you are prepared - ha - that is a stupid thought. Nothing prepares you for cancer..... nothing. You learn how to cope, keep getting out of bed each day, put some kind of smile on your face and go. If you didn't, I guess you could just live in bed, but that kind of life isn't so great either. I am still alive, still moving, ticking, thankful, grateful, still here. I may not be prepared, but I don't quit, anything, ever, ever, ever! So, come and get me stupid cancer, but know, you will lose by competing against me. ha.........

Thursday, December 9, 2010

First Session Chemo - Hours Before

It’s like waiting for Christmas except there are no gifts, no excitement, no fun – just anxiety. Chemo is in a few hours and my nerves are on edge, my fears are at the forefront, and the tears are holding back. I know it is going to go OK, so everyone says, and I know that, but it’s the after chemo that is affecting my psyche. All the ‘what ifs’ are the problem, why can’t those thoughts just be banned from my mind? Why do they haunt me?
I am terrified I still have the staph infection lingering somewhere in my body, silent, waiting, conniving, searching for the right moment to appear on the outside – fever, swelling, redness, PAIN. Will my body be able to take it, will I fight, can I fight – ability is everything, will I still have the ability to push it away and kill it. Chemo can’t differentiate between the good and bad cells swimming in my body, so as it kills my good cells, my little warriors, it kills my ability. That is helplessness. My brain can will my body all it wants, and positive thoughts can swirl around galore, but that doesn’t make the infection go away. I need my little warriors to do that.
Stupid thoughts I have, and they just keep running through my mind. What if it kills me, what if I get so sick I am in the hospital forever, will Jeremy still be here – will he want to, will I be done with this in a year and go back to normal, will I play softball again, competitively of course? Right now, nothing seems like it will be back to normal, nothing feels like it is progressing to the right place. I need to sleep more, need to relax more, need something more.
I had those other thoughts again too – the “why me” ones, that always creep in. What did I do, why pick me to go through this over someone else, am I really that bad? And I know it is nothing I did, I get that, but it doesn’t stop those negative thoughts from creeping in and ruining your positive outlook you are trying to have. I contemplated a stomping mat for myself as I did for my high school team last year, the girls stomped on it to symbolize beating one of our rivals – DIRT – the name of the actual team will remain anonymous. Maybe that is what I need to get through this, something to spit on, step on, kick, that symbolizes me kicking cancer’s ass.
On a great note, I am looking forward to getting back involved with my coaching at Philomath. Saw all the girls yesterday and they make me laugh, a lot. To be that age again, when all you care about is hanging out, a little homework, athletics, and having fun. There aren’t any cares at all, no real responsibility. Coaching them and being around them gives me that feeling for a small fraction of time, and I appreciate it. Besides, I love coaching, love the game, love learning what motivates one over the other. For me, more than ever, there are no obstacles that can’t be overcome. Maybe, somehow, my fight will carry over into the season, and will spark a new sense of fight and passion within the players –  we will beat DIRT, and all others, because the fear of “I CAN’T,” has left the field, only to be replaced with, “I CAN,” and “I WILL!”
So, here goes nothing folks, off to chemo and the unknown. Should I throw a party?

Tuesday, December 7, 2010

Let the Chemo Begin

Today had my appointment with Dr. Muth, my infectious disease doctor to determine if I am ready for chemo. My blood work is great, I feel great, I am healthy right?

I really love this doctor and he really does take the time to understand what is going on. And at this point the infection looks as if it is under control and we can move on BUT, it laid dormant before and who says it can't do it this time? And this time chemo will have my body and so my white blood count will be down and these are used to fight infection and if my little staph decides to rear its ugly head that could be bad. Talking hospital, very sick, and is it worth it? Dr. Muth still wants me on antibiotics for the next two weeks in a pill form but my PICC is coming out after my first round of chemo because that can have its own nasty little infection occurrence as well so as long as I am not on IV antibiotics it is best it comes out. And then from here on out I will have an IV stuck each time I do chemo.

It is a double edge sword because I need to start chemo but this infection needs to be gone and the only way to tell is time and a doctor's best educated guess. At this point I will start chemo on Thursday and then every three weeks I will have another dose of chemo for a total of four sessions and hope the infection has been destroyed. I am terrified of the possibility of it coming back, it could be deadly if I don't pay attention and catch it in time.

I will pay attention.

Monday, December 6, 2010

Post Surgery Follow-up

So, left expander is out, feel good, went and saw the plastic surgeon today - Dr. Havard. Everything looks good (well good as can be expected with just skin there and nothing else, oh... and stiches, tape and boy is it ugly).

So, he wants to continue to fill up the right one so the skin keeps expanding - three more to go - and it will be official... .I will be lop-sided. See, right now it isn't that bad, but once the right one gets bigger, it will become more noticeable. Oh, I know, you are saying, just put in a fake boob... Really, it is that easy right, just plop it in. Not sure it is that easy, but it will be my reality, yeah. So, this lop-sided-ness will last for six months and then we will go back in, put it back and start expanding. Fun, yeah, six months. At one point I had it all figured out. The timeline, everthing. Not anymore. I had reconstruction so prosthetic boobs wouldn't be on the agenda..... I love my life.......

Hair Cover Up

Or should I say, lack of hair cover up. Decided that I don't want to wear a wig, tried on scarves and hats today. Very hard to do, but a must for someone that will lose their hair. I was good until I got there, tough as usual, you know the Stephanie that can do anything. Nope... turned into a non-stop tear fest. I guess when faced with the actual reality of an event it makes it more real. Then to make the sobbing worse, got back to work and the cutest hat and scarf were sitting on my desk, well actually on the cardboard cut-out of my face that reads, "Stephanie's special personal handy hat stand. Do not remove stand from desk please." Who wouldn't cry? The kindness of others makes the tears worse I think, why would someone do this for me and it is amazing to have others be this nice and thoughtful for me. I appreciate it all tremendously and tearfully.

Monday, November 29, 2010

Egg Collection

So, the good part in all of this crazy cancer stuff is the notion that my eggs can be frozen and having a family is something Jeremy and I will actually be able to do. Amazing stuff really. So after my emergency surgery on Friday last week, I headed up to Portland on Saturday morning for my eggs to be collected from my ovaries and frozen for a period of time until we are able to have a family.

I honestly didn't want to go, I was still very sore from surgery the day before, but this was it, no stopping, no turning back, no nothing but yes, we are going. Jeremy was incredible and helped me through it all. With out him I wouldn't have done it. Without him all of this would have been difficult. I know he is struggling through all of this too, and he hated seeing me go through two seperate surgeries in a row, but he also knew if he didn't make me get into that car I would regreat it later.

We made it to Portland way early, and just sat in the car. We laughed, I mean really laughed. It was fun to just kind of be immobilized in time, in a parking garage, with nothing else to do, but talk. And I don't even remember what we talked about, but I remember laughing. He always has a way of doing that, but lately I don't see it as funny, for some reason I did that morning. And we headed in.

I got all gowned up, emptied the bladder, laid on the table, got the IV's going through my PICC line of course, and I was off to surgery to gather me some eggs. I remember going in, getting situated on the table, and then I was back in the room, listening to conversations around me. Oh, and the cramping, what an incredible feeling.... not comfortable, but bearable. They have drugs for that. I think waking up from that was much more painful than the day before when my expander was removed. But I had an infection with the expander and that was causing all kinds of pain on its own, so removing it made everything feel better.

The results.... they were able to gather 19 eggs that seemed large enough to take, with only 14 mature enough to be frozen in time. And the odds go down from there. Of those 14 only 75% will make it thru the thaw = 10 and then 75% of those will make it to the fertilization process, so 7-8. And then 75% of those will actually become fertilized = 5 and half of those will make it.... so maybe 3 when all is said and done. I was hoping for more. But that is 3 more than I had before the process started, so I figure I am ahead of the game. I love competition.

Post Surgery #2

In light of my most recent surgery, things are going well. Considering the enormous amount of pain I was in all of last week because of my infection and the real inability to function without pain pills, to functioning just a few days after surgery without pills is wonderful. I still am anxious about my bandages coming off, anxious of what I am going to look like, what others will think that don't know but when you stare it will be obvious I have only one "boob."

Don't even start to kid yourself and say, "Well, now, Stephanie, you can't worry about that," or "nobody is staring," or "how do you know?" Really, come on, we all do it.... stare at the guy with one leg, the lady with the beard, or the child with tubes in their noses. We do it, we all do it. Can't help but notice. And then we have comments, in our heads, but they are comments. I don't want to be part of those comments, thus the reason I went straight to expanders so no one one would know I had no "boobs." Even someone I hadn't seen in forever wouldn't know because I would be back to normal in no time. Normal..... not sure I remember what that was like. Constant pain, and managing of it, are what I experience on a daily basis. That is my new normal. And now it involves one less bump on my chest.

Who knew I would be this attached by something so unfunctional in my life as I know it. They just got in the way, caused pain when hit, and sagged alot in my aging process. Why am I so attached to these bumps? I don't know. It doesn't define me, doesn't make me, doesn't do anything, or do they? It will be at least six months before the expander goes back in, and we try again, so well after chemo and the healing process that will take. It is amazing our bodies and the abuse they can take to be better.

I will be better, I am better now, physically.... emotionally, mentally are the hard ones I am going to struggle through. My image doesn't define me, but it sure is a big part and not everyone gets to see the inside on a daily basis - my outside is always showing.

Friday, November 26, 2010

Surgery #2 - Expander Out

So, I leave in a few minutes to get my left expander out. Not looking forward to it one bit. I hate the thought of going back under to have my chest cut open and the thing removed. I will then have a right one but a completely flat chest on the left. It won't get put back in until after chemo when my body is ready for more surgery. I am scared but becoming grateful. My left chest is swollen, hard and very, very red so it does need to come out. There is so much puss and gross stuff underneath the skin that it needs to be out of there. I get another drain too, can't wait for that.

This is supposed to be an in and out surgery and home later today..... I hope. Then tomorrow I head to Portland for my egg retrieval. Yeah, two surgeries back to back. Everyone wants that, right?

I lost control somewhere......

Monday, November 22, 2010

My Friend the Infection

Sometimes I just don't understand how I could have this much bad luck. Why me? Why now? Why ever? I think this is where my good attitude and great drive might be fading.... and fast. Life sucks for me right now and I don't see it getting better in the near future.

So, last Thursday night, Friday morning, I started having pain on my left side. It was uncomfortable, but not to the point of needing pain pills, I was just annoyed. No temp either, so we are good. As Friday wore on, it proressively got more painful, and I needed pain pills to get through the night. And so the weekend goes on, and the pain was getting worse, and I had an elevated temp, but nothing real concerning - 100.4. My grandma had her 90th birthday party at Papa's Pizza, and nothing was going to stop me from going, how many times does a person turn 90 anyways, and besides a lot of the family would be there so I wanted to see them. And pain pills would get me through it.

Sunday night I was getting more and more concerned, so was Jeremy, but I just wasn't having the huge temp so I didn't feel the need to call any doctor. And besides what would they do? Just look at it and say it looks good, no worries, just rest, that is what they always say - just rest. I guess they don't understand that just resting doesn't pay the bills, at this point I wish it did, trouble is coming fast in that category.

Today, I woke up and could barely get out of bed to mix up my medication for the egg freezing procedure later on. My left arm and chest felt like someone was crushing them. And took my temp again and again it was actually normal - 98.4, so I was OK, and just needed to rest. I did call the doctor and he said to just stay resting for the day, if it gets worse give me a call. Called my boss to let him know, yet again, I wouldn't be in, and was struggling through all of this. At around noon, Joanne Stutzman called, one of the socail workers for the support group and such to check in on me. I told her everything and she said that I needed to check for redness and really should go in to see someone. I said OK, and we hung up. Went to the mirror and there it was... a very red and swollen left boob, well really my pecoral muscle stretched, but you know what I mean. Called Havard's office, and he wanted to see me at 2:30pm today. Called my mom to come get me and we went.

As soon as he looked at it, he knew..... and the expander needed to come out. And here come the tears....... wonderful! So, because I am in the process of harvesting my eggs, we would not do surgery this week, unless it gets worse. He pulled out about 5-6 ounces of fluid around the expander, it made it feel a little better, but not alot. It will get cultured and then we will know for sure how to fight it. For now I am on oral antibiotics and will get an IV line tomorrow afternoon to take the drugs that way. I will then have my eggs harvested this weekend sometime, then surgery sometime after to get the left expander taken out, and I will have my chemo port put in during the surgery as well. My life really sucks right now and is really painful, wish the pain meds would start working. How am I going to get through all of this?

The worse part is, if the skin on my left side starts to get creases, dimple or anything like that it may not expand very well when they put them back in, and there would be more surgery to get skin from somewhere else. And I am going to be lop-sided, and I don't want people to notice. I know they are only just boobs, but who wants to look at themselves in a shirt and see oneside with lumps and one side without? I know I don't. Why can't I just have something good happen to me right now? So back to resting and doing nothing - wish it paid the bills.

Thursday, November 18, 2010

Oregon Reproductive Medicine

So, this morning was much easier to leave on time, actually early. This was good news I was getting so it seems and couldn't wait to get there. Jeremy went to work at his 6am time and so I picked him up in Salem on the way, we stopped at Starbucks and were on our way. Nothing eventful as far as driving this time, found it, parked, got lost, then Jeremy read the big sign on the wall and we headed the right way. Yeah for him!

We are still early, about 45 minutes, but we are here. And we wait.

"Stephanie.." that's my name, we are up. Mind my heart is racing, again my blood pressure was really high, I had a ton of anxiety.

After the preliminaries we meet Dr. Bankowski. Very soft spoken, nice man, and he begins with the woman and her cycle. Explaining how ovulation happens, the chemicals involved, and how the procdure works. I listened intently to the entire thing and did really well holding it together, and as he ended I just couldn't keep it in anymore, I just sobbed and sobbed and sobbed. Jeremy wrapped his arms around me and we just sat there. Right when I thought something would never happen, here I was sitting here with a doctor and he is going to give me all the right stuff to give us a chance of having our very own child when this is all done. Are you kidding me, this great news doesn't happen to us, all we have gotten is bad news, this is a dream. The doctor sat there quietly.

When I was done crying, we went into an exam room and had to do a vaginal ultrasound to see if I was even a candidate. There is a timing issue with all of this and it needed to all start on the third day of my period . . . . today was day 3. So, we needed to look at my ovaries to see how many eggs I even had in there at my age. I was so excited but frightful of what he might find since I am older and would I have enough eggs to even do this. But I had hope it would be great.

"Ok, so this is your right ovary and these are the eggs - the black spots. Your biggest one is about 7mm.... There are 12 in there, that is good. And to your left one there is about 12 more, looks great." He checks for polyps or anything else that might be a hinderance and we are done. Things are awesome and we can move forward with everything. Still not sure what that means or how this all works, but it does.

Now we meet with the financial person... OK here comes the bad news and we are going to walk right out of here because I don't have any money right now to give them. We go over the costs associated, the funds we are going to apply for through Fertile Hope and the Live Strong foundation. The heavily disounted price is something we will need to pay but can pay over time, and on and on and on. No mention of needing money now. Then we move to another room for teaching.

Dr. Bankowski comes back in and says everything looks great, and we are going to start now. He was going to wait and push my body through another cycle but things looked really good right now and he doesn't want to make me wait for chemo any longer than I need to. My egg production is like that of a 25 year old, and the meds I will be on are very low dose for starters, something they would give to a 22 year old donor. Also my blood work looked great, there are no issues. Things are looking good.

WOW, there is a lot to learn when you are going to have your eggs harvested, and all the meds you have to take and exact times. UGH! I have never been very good at taking pills, let alone now I have to give myself shots, are you kidding me. Not just one a day, but two and in a couple of days it is three a day.... Yeah for me. The teaching session lasted about 2 hours and Jeremy and I learned how to inject them into my belly, the way to mix them, how to use the needles, etc. Jeremy did awesome, and I think he rather enjoyed the thought of sticking me with a needle. But when it came to give me my first shot in the office, he deferred to the nurse to give me my first one. Deep down I think he would rather not stick me with a needle.

Anxiety galore. Really, who likes or wants to be stuck with a stupid needle, surely not me. My hear is racing. But here comes the needle to my belly. Stick, ah sting, not so great, not so bad, all done, a little stinging and then a little muscle cramping feeling. Not that bad, but not great. The cramping feeling lasted about 10 minutes then it was over. Our teaching session was done, Carol left the room to get the doctor and the tears just started coming again. I felt overwhelmed, excited, like i was in a dream and I was going to wake up at any time. Jeremy says, "I still don't think this has all sunk in yet that this is really happening." He wrapped his arms around me and told me it was going to be alright. It felt good to have him there. He was being absolutley amazing throught the entire thing. He was coming back to the Jeremy that I needed through all of this. Things are going to be OK.

Dr. Bankowski comes back in, asks if there are anymore questions, good luck and we will see you in a couple of days. "OK," and we head out.

Next appointment is Friday, and then it could be every day, every other day, whatever my body is telling them when they take the tests - ultrasounds and blood draws. And we will harvest the eggs in 10-12 days. Going to be a ton of driving and gas money, hope its all worth it in the end.....

Portland Medical Oncologist

It is Tuesday, time to head to Portland to see the Medical Oncologist. Jeremy and I had planned on leaving by 7am, but it was later, much later - 7:45. What's amazing is how much all this absolutely drains you emotionally and then turns to your physical self. We are absolutely exhausted to say the least and I wish I could just lay in bed for a couple of days to just sleep after these last couple of days - what an emotional roller coaster..... And I will get to that.

We leave, late, and head to Portland, but not first before stopping at Starbucks of course and getting gas, pushing it even more. When you are getting bad news, it is hard to be in a rush to get there. And we're off. Besides one almost near death experience on 217N, we make it. And when I say near death, I mean it, cars all slammed on breaks, thank god pavement wasn't wet and my breaks work. I was able to stop the car before ramming into the PT Cruiser in front of us. How Jeremy stayed calm I have no idea. He did and then laughed when it was done. It was good. Needless to say my blood pressure was severly elevated when we got in to see the doctor.

Dr. Ali Conlin is her name, and she is most terrific. She talked with us for quite awhile and went over my reports with me, again how lucky I am considering most my age are never found until the tumor is 2-3cm and can be too late by then. My doctor saved me by her referring me early. She explained that what I have is what 70% of all breast cancer patients have. That only 10% is hereditary, meaning got it from a family history and the other 90% are just like me - very random. She said 1 in 8 women in a family will get breast cancer. I had always thought the stakes were higher in the family connection, nope. She was amazing. She is a specialist, breast cancer specialist, and comes from Sloan-kettering out of New York - the big cancer research place - amazing. We talked about my chemo and she explained to me that I definitely need it, but I am right on the edge. There is no evidence that shows by giving me a strong dose of chemo vs. a lighter dose betters my odds of recurrence so she doesn't see the need in putting my body through the big bout of chemo and create so much toxcicity within it. I will do four sessions, three weeks apart, lasting 12 weeks and be done with that, and then a pill a day for five years - Tamoxifen.

Then we talked about other things. Before this whole thing started Jeremy and I were ready to start having a family. Jeremy has, or should I say, had testicular cancer when he was 20 while in the Army. his teste was removed, and radiation performed. He goes in for checks all the time, and so far so good, no reccurence. So we were in that process of looking into him more and then WHAM, I get breast cancer, game over...... And we don't have $10,000 floating around just to go in and see some fertility specialist to get anything done now so we may have a chance after this whole thing is over. I cried, we cried, for a long time over it, came to the realization it wasn't ever going to happen and that is that.

But sitting there talking to Dr. Conlin, she says if it is something we want we need to call this place, and talk to them about coming in and getting my eggs frozen. She will give me a month to do it before I start chemo, but that is all. normally they like you to start on the 6th week mark and I am passed that. This would put me at the 10 week mark, and she says that would be fine, for she doesn't want me to have the regreat of not doing this if children is something we wanted. I take the number, say thank you, and we leave.

Once out, Jeremy and I talked about it, and decided we would call. Didn't have much hope in it actually happening, again we don't have that kind of money anywhere, but I knew my mom would help, she always does, and never holds it over my head, and she really doesn't have it, but she would help...... She is most fantastic like that. I called.

Talked to Corby, she got my information and I would be put in something called a Fast Track and Andrea would be the nurse following me. Corby would email me information and she set up an appointment for us the following day at 10AM at the Oregon Reproductive Medicine. That was that. We head home.

I was so excited to get home and read the email, but also knew there was probably still no way of this happening, we didn't have that kind of money. But I kept little hope. Got home, read the email, and no where did it discuss money, the cost. Jeremy and I decided I should call them because we didn't want to waste anyone's time by keeping this appointment if they wanted money up front to pursue it.

Andrea talked to me.....
This is a time when we don't want this to be about money and more about getting yourself better and well, and then being able to have the family you wanted. This service is heavily discounted to our cancer patients and you can pay all or little and take your time paying it off. This is something we truly believe in and want to do our best to do this for you.

We talked a little more, I cried alot more, hung up and let the sobbing begin. How does this happen, good news in the middle of so much bad. Tears won't stop..... I think my angel is still there.

Friday, November 12, 2010

Portland Calling

Dr. Conlin's office calls to set up my appointment, goes through the questions: last name, birthdate, address. Then she asks me for my phone number, I pause at this one thinking, "You called me, you should have it right there in front of you...." I didn't remind her of that and told her, but it was quite a long pause. Then she says (this is where I laugh), "So we have nothing for next week and looks like we have a couple appointments available the following week."

"Uh, that isn't going to do. I am at six weeks since surgery on Tuesday, and I MUST start chemo treatment soon. I will see whatever doctor is available."

Pause....and she says, and I am not kidding (remember she knows my address, city Albany, just asked me), "Well, do you mind traveling? She has office hours here only one day a week, but in her other office she has more choices."

Hahahahahahahaha..... this is not laughter of ha-ha you are funny, but rather, ha-ha, are you that stupid?

"I am already traveling, I live in Albany, so anywhere I go would be traveling. Where are her other offices?"

"Beaverton," is the response.

Picture this..... Phone goes off the year, to the sky, fake scream, breath, count 10, and "That is just fine, please get that scheduled."

Tuesday, November 16th, 10AM, I see Dr. Conlin in Beaverton, suburb of Portland, already traveling, to get my plan started.

Oh, how I love waiting...........

Appointment with Medical Oncologist

So, after finding out my score yesterday, I now had a meeting with my medical oncologist to go over the findings. I know what you all are thinking, "How in the world did she get in so fast?!"

Ha ha the power of cancellations and the right time. Someone had cancelled and I said yes, sign me up.

I was late for my appointment - imagine that - and they get us into a room pretty quickly. Jeremy assumes is usual role, slumped in a chair, legs way out, arms crossed, blank stare - he really loves to be there, don't pay attention to the body language at all. I have asked him to please be more engaging, enthused, showed him how his body language is, and he said he got it, but here we are same posture, same face, same nothingness. Not sure why he comes.

So, Sarah comes in first with the H.E.R. Project to talk to me. Forgive me now for I cannot remember what this stands for and quite frankly, I am being too lazy to Google it. She was great, absolutely. Asks me about everything from first surgery to infection to where I am now. She wants to know if I want a chemo partner, somone who has been through chemo themselves, and could be there for me. I said, yes, of course, I don't want to go it alone.

She then pulls out a book, How to Help Your Wife (and yourself) Through Diagnosis, and says to Jeremy, "This would be a very beneficial book for you to read. It is informative with humor and written in a way that really understands the husband of a breast cancer wife."

Mind you, this entire time she is focused on Jeremy in his 'position' and he acknowledges her somewhat. She then extends the book out to him and he does nothing, like he doesn't notice the gesture. He has completely zoned out of the conversation and it shows. She goes to give it to him again and he snaps out of it or something and starts to lean forward and slowly takes it from her.

She says, "You don't have to read it, but it could be very helpful to you."

He says, "Yeah, I will take a look at it." Then hands it straight to me. Heaven forbid he hold on to anything and be responsible for something. We both know he won't read the book, so why he took it from her, who knows. Jeremy tends to lie just to get out of uncomfortable situations, so by saying "Yes, I will look at it," he is in the clear. "Phew, got out of that one," he thinks, and "Here you go wife, take care of this for me like everything else you take care of for me.
Knock, knock, knock...... Dr. Lee comes in and Sarah leaves, says she will call me later and look into my chemo partner.

Here we are, the score I have been waiting for, the plan I want to start..... ready, set, WAIT! There is no plan, there is no start, there is wait and see more doctors. Since my score is 18, on the cusp of OK and intermediate risk, stage I (practically terrific!), grade 3 (completely devastating), negative nodes and clear margins (hooray!), tumor size 1.5cm (middle of the road), and Her2 Negative/ER &PR Positive (another plus) and age (younger) she isn't sure what to do, how much, low dose, high dose, 4 sessions, full 8 sessions..... There aren't alot of people in my spot that she has seen to prove how much chemo time would be best and she wants me to see a specialist.

OK, great for the specialist, but seriously, why did I come in to hear that? Why didn't we get on the phone yesterday when I originally called and set up my appointment then with the specialist. Quite frankly I was glad to be on to a specialist and out of this doctor's care. It just seems like dragging feet is all I am getting and if I wouldn't have called on my own to check up on my score, I still wouldn't know.... UGH!

She leaves us in the room while she calls up to Providence in Portland to talk to their cancer specialists and make sure they can get me in. It takes awhile, we sit in silence pretty much waiting. I told Dr. Lee as she left that if they had a cancellation today, I would go now, I want this started. She said she would see.
Endless amounts of time went by, she comes back in. Says she spoke with the doctor and they aren't even sure what to do with my treatments and to give them some time. Dr. Lee lets me know they will call me to set up the appointment for next week and if I don't hear from them by Monday, then to give her a call.

"OK, sounds good," I say.

"Just give us a call when you get done with that and we will set up a follow up."

I get a flu shot while I am there and on my way out, I schedule the follow up. Unfortunately it isn't until December 3rd, and my 6 week mark is November 16th, and chemo should really be started by then. I told her nurse and her scheduler this wasn't acceptable to me and I had to get this started sooner, they said to call if I get in sooner with Portland and they would see about changing it to sooner if I got up there sooner. Apparently they don't know me very well either. I am pretty pushy, ask the right questions, I will get in Monday or Tuesday next week, duh.....

Thursday, November 11, 2010

My score

So, I couldn't wait any longer and had to know if they got my score in or not, the anticipation is killing me! I called Dr. Lee's office today, left a message reminding them I was waiting, and to call me back. I got a call within the hour. My score.... drum roll please...... 18! Now I know it is over 17, Dr. Lee said it would be, but is only one point over 17 so my chance of recurrence is lower at this time and that is something to celebrate. This is fantastic!

So, I go in tomorrow and meet with Dr. Lee, we go over everything and start chemo as soon as we can get it going.

I hope my scalp looks good bald....... My perspective is always changing....... things can always be worse, so celebrate the not so worse news.

Wednesday, November 10, 2010

Oncotype Explanation

Yes, I am still waiting for Oncotype score, but I found this explanation of what it really is and why and thought it may be helpful to anyone that may want to understand its purpose more. I should hear next week what more score is and what chemo will consist of. Thank you for all your thoughts and prayers.

Tests of gene patterns

Researchers have found that looking at the patterns of a number of different genes at the same time (sometimes referred to as gene expression profiling) can help predict whether or not an early stage breast cancer is likely to come back after initial treatment. Two such tests, which look at different sets of genes, are now available: the Oncotype DX® and the MammaPrint®
Oncotype DX®: The Oncotype DX test may be helpful when deciding whether additional (adjuvant) treatment with chemotherapy (after surgery) might be useful in women with certain early-stage breast cancers that usually have a low chance of coming back (stage I or II estrogen receptor–positive breast cancers without lymph node involvement). Recent data has shown it may also be helpful for patients with positive lymph nodes.
The test looks at a set of 21 genes in cells from tumor samples to determine a 'recurrence score', which is a number between 0 and 100:
  • Women with a recurrence score of 17 or below have a low risk of recurrence (coming back after treatment).
  • Those with a score of 18 to 30 are at intermediate risk.
  • Women with a score of 31 or more are at high risk.
The test estimates risk, but it cannot tell for certain if any particular woman will have a recurrence. It is a tool that can be used, along with other factors, to help guide women and their doctors when deciding whether more treatment might be useful.

Thursday, November 4, 2010

Pathology Report

Cancer sucks! That is all I have to say…. IT SUCKS!!!
My life lately has been a series of events that at times, seems out of control and crazy. Not having control and feeling helpless is hard for me, but I am learning… slowly. Right now my infection seems to be gone, at least it hasn’t come back since coming off of the antibiotics so cheering is in order – YEAH!!! As long as it doesn’t come back, then everything can go according to plan.
So, on Tuesday, the 2nd, I finally met my medical oncologist – Vickie Lee. What a great woman she is and comforting – very helpful.  It was the day I learned “my plan” as far as the pathology report and what to expect or do next. Jeremy and I are waiting in the room for quite a while and she comes in.
“So, how did you know to come in, in the first place? You do have negative nodes,” she says.
“My gynecologist likes her patients to have a baseline mammogram before age 40 so I decided to get it over with and just schedule the thing.”
Dr. Lee, “So you weren’t sick, didn’t feel it, nothing?”
“Nope,” I answered.
“Amazing…..”
And we go on to talk about how I am feeling now, my road so far and she asked me if I had seen my pathology report, so we looked at it and she started talking.
“So the tumor was 1.5cm, and you are a grade 3……”
I just started crying and she paused and really I don’t remember much of what she said after that. You see I knew from all my reading and researching that grade 3 was the worst case scenario and meant it was very aggressive, my thought was, “I am dying.” I sobbed, and not just tears streaming down but full on sobbing, can’t breathe, feel closed in, and no talking. She held my hand, Jeremy rubbed my back, and she said, “But your nodes are negative, you are going to get through this.”
And that is the part I knew. The questions all made sense from the moment she stepped in – I can put two and two together. Dr. Lee was surprised with a grade 3 tumor, how it was possible the lymphnodes were negative? Un-freaking-believable. That was the justification for my tears, I had skirted death for now. I wouldn’t necessarily be fighting for my life, but fighting to make sure it didn’t come back again. She said to me that given six more months the conversation would have been different, it probably would have made it to my lymph system and by then it is a full on “get your dukes up” fight. Still sobbing, couldn’t stop. But this is how she put it into perspective – with a chart, circling my pathology stuff (oh how I love charts).


Better
Middle
Worse
Size
< 1.0 cm
1.0 – 2.0 cm
> 2.0 cm
Grade
1
2
3
Lymphnodes
No

Yes
Estrogen
Positive

Negative
Her-2
Negative

Positive


Then we talked about chemo and the oncotype. Since I am all those things above, I am a candidate for the oncotype. The scores she broke down again with 1-17 no chemo 17-31 middle of the road chemo and >31 is an attack with chemo. She knows that I will be above 17, but by how much, she doesn’t know. Because of my grade chemo is inevitable. Well, let me take that back… I could choose to not do any kind of chemo and my chances of a relapse are 32%. So with chemo and tamoxefin my chances of relapse are 9% over a ten year period. Still seems high to me, but I will take it, well there isn’t a choice not to at this point is there. Unless I want to play a game with death…. Uh, no thanks.
We talked more, I cried more, couldn’t stop really, Jeremy held me, Dr. Lee held my hand. Moment of weakness? I am allowed. In fact I have been having them a lot lately. Somehow, I still get out of bed in the morning and get motivated. I am determined I have an angel looking out for me, let’s call him Brian…….. thank you, Mr. Angel.

Tuesday, October 26, 2010

The drains are OUT!!!!!

Today the drains came out!!! If you saw these things you would be so stinking happy for me. I was sick of them already. Showering was awful, changing bandages, emptying them, etc. And the balls in the pocket thing was getting old. Since three weeks had gone by with them in to catch all the fluid from surgery, they had to come out. Not a fun experience, but no worse pain than waking up from surgery in that god awful pain, but rather an uncomfortable feeling when she pulled them out.

I also had the appointment with the PICC line people to clean it, change the dressing and make sure all was OK. It was, but I made sure they knew how badly I wanted the thing out and was hoping for Friday. Thursday would be my last full day of antibiotics and I just wanted it out. I am waiting for a phone call from them to say the doctor had ordered it. Haven't gotten it yet.

Besides all of this excitement, all things look good, or so they say. The pain is still ridiculous, and the pain pills are still used, thought I would be done with them by now, guess not. Finding new pains every day, want it to stop. Oh, and I finally shaved my arm pits - terrific! Well, Jeremy did it for me, not possible for me to really do it. Had to use an electric razor, but hey the long disgusting man hair is gone from the pits. You can do a dance for me now. I hope to be able to shave my legs soon, it is the bending over that is difficult.

Trust me I have my moments of loss. Just cry for no reason. Did it at the LBCC volleyball game callling stats the other night. Just teared up, nothing really happened just thought about my missing chest, and how much it hurt to just sit there. I think the pain has become very annoying and I get frustrated with it that it starts the tears. Experienced frustration last night and got a great response because he couldn't get to sleep, "Do you need anything?" There is no fixing it, and I hear the sigh.

Love and affection would be nice.

Headed Home #2

Tuesday, October 19th, 2010
I am getting out of this place – YIPPEE! Not feeling so great this morning, sweaty again, a lot of people are in my room, and I have to be over to Ambulatory Services by 9:30am. All I wanted to do was shower, not this morning, had to move. All my bandages got changed, got dressed, brushed my teeth, and I was following the nurse to where I needed to go. She carried everything for me, I wasn’t allowed to lift more than 10 pounds. I appreciated her help.
Got to the next place, sat in a chair to get directions on how to do the PICC line, and she asked me if I wanted anything, water? I couldn’t answer, and sobbed, hid under my hat, and just needed a minute to gain composure. She didn’t rush me, but consoled me, knew some of what I was going through, and this just was enough to break the camels back. I just held her hand, that’s all I wanted was someone to hold my hand and tell me it was going to be OK, eventually. She had the patience to put up with my break down.
We got through it, Darcy picked me, got my prescriptions, and she took me home. She had some running around to do, so she left and came back, and I had showered and got some clean clothes on. Darcy helped me with my wrap, and then I laid down. At least Gypsy was home to keep me company. She wouldn’t let me out of her sight, and purred on my lap the entire day and night. Oh, how I love my cat.

Day 4

Monday, October 18th, 2010
And here they come, with a plan, maybe, no, sort of…. Come on people make up your mind.
So, Dr. Mooth, my infectious disease doctor, came in first to check up on me. I showed him the sore on my left drain side, and we talked about infections. We knew we weren’t dealing with some superbug, and that I needed to be on antibiotics to kill it. But as long as my expander was left in, then we would have to set me up with a PICC line and give the drugs through IV for ten days. He would have preferred to remove the expander, but Dr. Havard didn’t want to do that, put me through more surgery.
Dr. Havard came in a short time after and I told him what Mooth said. Havard was heading back to the office and would give Mooth a call and they would come up with a plan. It was around 11:30.
Darcy and my mom were there and after this my mom went home and Darcy took me outside. We walked and walked and walked and it felt awesome. There is nothing better when you are feeling crummy than an awesome walk in the sunshine – NOTHING BETTER.
We landed at the cafeteria to eat something and a nurse came and found me to tell me they needed me back in the room, a decision had been made. I ate fast and headed up. That was quick considering how fast doctors take to talk to each other. But at least they had a plan and I would be going home, hopefully – ha.
Got back to the room and there was a woman in there waiting to get me scheduled for my PICC line and that Dr. Havard was wanting me to do this. I wanted to talk to Mooth first before I went ahead because I wanted to know why he changed his mind. Boy did that cause an issue. No one seemed to understand why I would want to talk to Mooth before anything happened. I believe I am in the patient and I have the right to have a choice regarding my health as well. I paused progress for about 30 minutes before we did the PICC line. And what an experience that was.
Everyone must leave the room and it is me and her – Diane. She explains the process, what the position is that I am to lie in, and all the things that could happen but never really do… The whole things scares me and I really didn’t want to do it. I was alone again, battling something I had never done before, I found strength somewhere, but really never had a chance not to.
Imagine laying there on your back, arm extended out toward Diane, palm up, and understand the excruciating pain that comes after you have your boobs cut off and laying in this position – can you say painful?
Then imagine this drape laid completely over you to keep things sterile. You have a little window to look out, that is about it. And the ultrasound to track the line is there with you and should be Diane’s eyes for the next few minutes. Ok, here comes the bee sting, and boy does it stings. She has to numb my underarm to get into my vein with the IV. It’s numb. Uh-huh, yep still hurts.
And she starts feeding in the line. I can’t see it, can’t feel it, just pressure, and I just want out from under this blanket of sorts. Good thing I am not claustrophobic, would have been much tougher, pain and tight places.
She is feeding the line and uh-oh, Sherlock is not working. Oh, good ol’ Sherlock, what in the world is wrong with you (much worse language was singing in my head, but I had an audience, best to stay mature at this point). So Sherlock is this sort of machine that is dialed into the ultrasound machine to make sure she is feeding it properly and not up into my neck or on the other side of my neck. Oh, great it could go to the wrong place is all I could think. But hey, before Sherlock they did it all by feel, so that was what she was going to have to do. She worked very quietly, hated it, and I kept asking questions as I always do. Silence is scary. She ultrasounded my neck to make sure it hadn’t traveled up into it, not there, and then said she thought she got it. OK, clean up and she would get me to X-ray to make sure the line made it to my heart.
I wait.
A half hour later, x-ray came to me, snapped a shot, and left.
I wait.
“Good news,” Diane says, “ I got it in the right spot.” So, now she has to officially close me up, tells me how to care for it, and off she went.
By this time it was about 5:30, I was exhausted, so I fell asleep. 7pm came and my nurse, Stormy came in to wake me to get me out of bed and to the support group. I was so exhausted. I said I didn’t want to go. She reminded me of our talk the night before and how much I may need this group, she told me she didn’t want to harass me, but knew this would be good for me. I got up, put on my hat and coat, grabbed my IV bar and walked to the boardroom. I was glad I went but kept falling asleep during the meeting.
That night they gave me some anti-nausea pill, my stomach was so sick. It worked but also made me feel like a zombie. Found out later they used to use it for anti-psychotic people to sedate them….. Yes, it works, too well. No thanks, I will take something else please.
I had to stay another night because they wouldn’t let me go home alone, Jeremy was out of town for week the entire week. Oh well, what was one more night, right?

Day 3


Sunday, October 17th, 2010
Today was my break down day. Janice comes in to tell me I don’t have MRSA and we are switching antibiotics because it is staph infection and I don’t need as potent of drugs and she got the doctor to write me orders to be able to go outside. I was so ecstatic, but only a few problems…. I had no one to call at 8am to tell them the wonderful news and I had to be supervised – remember my husband, again, chose hunting. I cried, a lot. All I wanted was to share my awesome news and go out into the sunshine and just walk, breathe fresh air, and there was no one to do it. I called Whitney, well texted, who really calls anymore. I was hoping she would be able to break away from her family and take me outside for a walk. And he never called to find out about my cultures, never asked when he got to the hospital that night. He must have forgot how long 48 hours was or forgot the reason I was in there altogether. So for anyone who doesn’t know, 48 hours equals two days – how long it takes for cultures to come back.  
She showed up, and then Kourtney showed up too just randomly and the three of us went outside. I was so overjoyed, excited, sad, and more, just to be able to have the sun hit me in the face. We walked around a bit, then got some food in the cafeteria, sat outside and talked. They had to go, so I wandered back to my room. I can officially say my depression set in, and I was alone. I broke down and just sobbed. My nurse came in and I don’t think Stormy knew what to think or do for I had been so upbeat thus far. All I wanted was out of this stupid room and to be outside in the sunshine. She asked where Jeremy was, and I was embarrassed to say because it made me look like a real trophy for him – no not really, that is me being sarcastic. Stormy said she could call him, but what would that do is what I thought. I see the conversation now…
Stormy: So you know your wife is in the hospital and could really use you here?
Jeremy: Really? Well, I am out hunting, it will be a couple of hours.
Stormy: So you couldn’t come now?
Jeremy: No, I am busy and then she would have heard his big heavy sigh when he doesn’t get his way. THE END
So Stormy was coming up with a better plan to get her stuff done to get me outside, my tears started to subside – the feeling of loneliness sucks, and your spouse is supposed to be there with you, no matter what. BUT my sister made a timely entrance with my niece, Hadley, and she took me out. I was thankful. We walked, laughed at Hadley, and just enjoyed the weather. I felt better.
Went back to the elevator, and here comes Jeremy, finally, 5pm. Good that he showed some urgency of visiting his wife before he left the next day for the week. Pleasantries were not abundant. He bitched about his tiredness, I said to go home. When you are in the hospital or just sick for that matter, all that exists is you and the pain you have to deal with. Others who are healthy around you, are just that healthy, and quite frankly, I don’t care how you feel. Experience my pain and know you being tired really isn’t that bad. He helped me shower and left about 8pm – great visit.

Stormy came in to see how I was doing. We talked, I was grateful.... Thank you.

Day 2 of Infection

Saturday, October 16, 2010
It is amazing to me how many nurses don’t know how to read or should I say they choose not to use this skill. Because I have cancer and lymphnodes were removed there is no more nothing on my right arm… PERIOD! No blood pressure, no blood draw, no nothing, but somehow every time the came into the room they were grabbing for my right arm AND there was a sign directly behind me that said NOTHING on RIGHT arm (well it was something like that, but way more pleasant). By the end of my stay the words that came out of my mouth, and I am not exaggerating, “DON’T TOUCH ME!” and “LEARN TO READ (as I am pointing on the wall)!” My tolerance for stupid people is low.
How can you just walk into a patients room and not know anything about them? I don’t know, read the chart, ask, whatever, because if it is someone who cannot communicate then they, the nurses, are endangering them and it isn’t cool, at all. I don’t know, read, it can be good for you job performance.
OK, enough on that…. Saturday went well in the hospital, it sucked I was still in there, alone, no husband, and all I wanted was a shower. The drugs they put you on make you sweat profusely and I was just feeling disgusting. Now, I am a very modest person and can’t just flaunt myself to anyone so I waited for Jeremy. Was supposed to be early, but he was late. I guess carrying a watch would have been too difficult, or wait a minute, caring what time it was to come see your wife wasn’t a priority. I think that one fits better.
My nurse, Janice was amazing and she made it all bearable for sure. She had the Lymphadema specialist come in and talk to me about life after removed sentinole nodes. She was wonderful and filled up a good hour and a half of my time. She measured me, asked questions, answered questions, and after she left I decided losing nodes was much more serious than cancer, are you kidding me. I don’t want to wear a stupid compression sock around my arm and there are so many things I have to be more careful about. Apparently, this part will be harder than I thought. No more recklessness on my part – dang it!
OSU played that night so I did have the game to look forward to, that was great. Jeremy showed up around five, I got some help showering, we noticed quite a bit of puss and drainage on one of my drain holes and let the nurse know. This was the first sign of infection outside of the body. She cleaned me up and showed Jeremy how to do it and now I had to clean it once a day – wonderful.
Jeremy discovered a waiting room with a larger TV that we could go and watch the game in. since I wasn’t constantly hooked up to an IV tower, it was easy for me to leave my room. We went down to the area and watched the game. I lasted the entire game, but was in a great deal of pain by the end. Maybe it was because we lost, but somehow I doubt it for I don’t get that involved in it. At one point what was strange is a nurse came in and said, “When are you two leaving?”
My jaw kind of dropped because I wasn’t sure how to answer this question and the way she asked it was awful, and my husband is slinking down further into the couch – he hates confrontation, I say, “uh, not sure I understand what you are asking?”
“When are you guys leaving, you can’t just hang out in here.”
“I am a patient here,” I respond.
“So why are you down here?”
“Watching the game,” as I talk really slowly, and point at the TV, the obvious reason of why I am in this room. Remember my tolerance for stupid people is low, and right now my tolerance for rude staff is even worse.
“Oh,” she says and turns around and leaves. WOW
Then Jeremy pipes up, “Maybe we should just go back to your room.”  This from a man who hates confrontation and can’t seem to stand up for anything at most times.
We stayed. Some rude nurse wasn’t going to scare me away from the game on a much larger TV than what was in my room. We should have won.
I never mentioned anything to Stormy, my night nurse, actually forgot about once I got back to my room. I told Janice the next day, and she told Stormy that night and she apologized to me and said she would talk to the nurse if I wanted her to. Nah, I think I said all that could be said. Some people should learn how to talk to people and not be so snotty and rude, this woman definitely needed some customer service classes.  

Thursday, October 21, 2010

The Emergency

Friday, October 15th, 2010
WOW! I really cannot move my left arm at all, I have to use my right to pick it up. We have another doctor’s appointment this morning at 9am, but Jeremy has a chiropractor appointment at 8:15. I struggle to get out of bed, and get to the bathroom as fast as I can and vomit. I thought right away to get out the thermometer and take the temp – 101. OK, “JEREMY! Call the doctor, NOW! And lets get in the car and head to Corvallis.” I am scared, in pain, Jeremy is talking to doctor’s and I am trying really hard to focus on something else besides the pain and how long it really takes to get to Corvallis. Faddis wants me to come in immediately.

We get there, Jeremy finds a wheelchair, and we head on up to the offices. They get me settled in and Dr. Faddis will be there soon. They admit to the hospital at 9:20am, I have some sort of infection and they need to get me on antibiotics right away – Vancomycin. Now, if you aren’t familiar with this drug, it is a big and powerful drug that is designed to wipe out small villages (ok, not really, but it is a big daddy). They use it for MRSA which is a resistant staph infection to normal kinds of antibiotics so they were shooting at this. I was terrified. Cultures take 48 hours to get back so Sunday morning we would know what we were dealing with. As for now, my pain was incredible, I was terrified, and this nightmare was really true.

They get me sedated with quite a bit of dilaudid – 2mg, through my IV and I can only feel a little unease. Finally. Jeremy leaves for his chiropractic appointment and is back to meet Dr. Mooth, my infectious disease doctor. He asks me all the questions I have been asked by so many and the amazing one was how did I know to take my temperature. He thought that was strange. I explained I was married before and was very familiar with infections and my ex and knew you didn’t play around with them. He just couldn’t get over the fact that I knew to call and noticed something different. I explained to him my awesome week and how things were going really well, I wasn’t just laying around and saying pity me, but rather I was up and trying to get on with my life. This wasn’t enough to confine me to a bed or lazy boy. So, I knew when I was headed down hill there was something wrong and needed to call. I guess everyone should be more in-tuned with their bodies.

After all the awes and ohs, we move on to me and the plan. They are checking me for infection, cultures take 48 hours, will have them Sunday morning. Until then I would be on Vancomycin and the ‘F’ name drug (can’t remember name) until we knew what we were dealing with. I did have an allergic reaction to the Vanco, but they gave me benadryl and I was good. The itching and redness stopped. And Jeremy left the hospital – the hunting couldn’t wait, and he had a friend in town that was waiting to go out. He would be back later when he was done.

He came back around 8pm and was exhausted and just wanted to go home and get to bed for he had to get ready for hunting the next day. Really, he was going the next day too. What part of wife in hospital doesn’t make sense? What part of I am in pain, can’t keep food down, and am on Vanco doesn’t register? This isn’t some walk in the park. And right now you don’t have to take time off to be here for me. Nope, he was going, he had this planned. Amazing, the thought process.

I go to bed, more tears, lonely, scared, I think this is when my 'I can' attitude says bite me and take a hike. There is nothing worse than feeling alone and dejected, nothing.....

Updates Gone Wild

Yeah, I am back… well at least for a few minutes. Typing doesn’t really bode well with this whole recovery thing so not sure how long I will last.
My thought was to update everyday of when I was in the hospital but way too much time has passed to do that and too much has happened since that everyone wants updates – feels funny to be so stinking popular (hahahahaha), so I will wrap it up all in one.
Wednesday, October 6th, 2010
So after my first adventure from bed I won’t just leave it alone – I must get up again. Goal is to get OUT of the room this time. So 12:30 hits, call the nurse, I am already starting to sit up, she helps me get the proper attire on, and I stand, shuffle, hold on to my IV and we venture out the door. There really is no fast to the process, just moving. Felt good, really hurt, sense of accomplishment. Get back to the room after just one pass through nurse’s station and now I am ready to get cleaned up – brush teeth, wash face, take a washcloth to myself, and just feel a lot better. And back to bed – YEAH!
2pm – My sister and family come to visit me. I was happy to see them, and Mason seemed a little scared of everything, very shy. Oh, but Hadley was oblivious. She had to show me her new pink glove and her pretty pink dress that she just had pictures in. They stayed 15 minutes, that was all that was allowed for the little ones.
3pm – I want to get up again. Same routine, but this time I walked past the babies, down towards the other nurse’s station and back. It was so exciting and I couldn’t wait to tell Jeremy. It was 4pm by the time I got back to my room, and I knew he would be off at 4:30 and back to the hotel around 5:15 and he would give me a call. He called, I was telling him, and apparently someone else had decided to steal my thunder. You see, she showed up as I was walking out of my room and she asked me if I was going to call Jeremy. I said he would be calling me and I would tell him them. I guess she decided it was her news to share. My feelings were very hurt.
Thursday, October 7th
8am – My doctors come in, not the actual doctor but the helpers. I ask one about my results and he says he will check on them. I knew they were supposed to be in today and couldn’t wait to get them. He left the room, came back and said I had negative nodes and clear margins.
I cried….. no words, just tears.
You see, I felt really sorry for the guy, he just stood there, not sure what to do and then he asks me, “Are those happy tears?” I nodded. He stood there quite awhile and then said he would see me later and I was doing great.
The worst part of that moment was being alone. There was no one to hold my hand, no one to get me a tissue, no one. I hope for anyone who reads this blog that has a spouse or loved one in the hospital – stay with them!!!! I know it is not fun just sitting in a hospital waiting for news – I did it for 2 months with my ex-husband – but when the doctors come in to give any kind of news, taking it as a team is much easier. I didn’t get to experience that at all. Each time I was alone. Work, bills and life will figure itself out, just be there for each other – through sickness and in health.
The rest of the day was uneventful. Jeremy came in around five from work, and he said he was off Friday -  for his foreman seemed to remind him his wife was in the hospital and he really needed to be there. And that wasn’t a thought you had on your own? Funny…..
Friday, October 8th, 2010
I am getting out of this place!! I cannot wait. I get discharged around 11am, Jeremy gets me in the car and we are headed home. When we get home it was an absolutely beautiful day, and all I want to do is go for a walk. Jeremy gets all the stuff out of the car, then helps me, I get on some other clothes, and we walk around the block. It wasn’t a very long walk, but it felt so good just being in the sun and moving. Fresh air is a wonderful thing and we shouldn’t take for granted.
The rest of the day I sat outside and enjoyed the sun. Jeremy had to watch his recorded shows, so company I was lacking. It would have been nice, but when I asked it was a burden to get him to come out and sit with me. Sometimes I don’t understand.
Later that night Heidi and Katy came by and asked us if we needed dinner. We didn’t, but Jeremy had to go to the store, so they walked with me around the block. I went so much further this time, and probably out a little over a half hour. It was awesome to just be able to move my body. They went to dinner, and I rested some more.
When Heidi and Katy got home we went over to their house for a little bit to visit. I talked about how I hadn’t had a bowel movement since last Monday morning and so Heidi and Jeremy went to the store. And boy did they come back with a plethora of constipation medicine. I tried the saline stuff and water – just half.
Nights were awful. It was hard to get comfortable, and I don’t care how much pain medicine you take it can never cut through the pain, I don’t know who they are kidding. It was a chore to get me to bed every night and for the most part Jeremy was good. He didn’t like being woken up from his sleep when I told him my ice melted or I needed more meds or help me up or can I have some water or….. I guess he couldn’t see the severity of my wounds to look past himself to give up a little sleep and comfort to help me in a time where helplessness was all there was. It caused fights, but I learned pretty fast to take care of myself and do more for myself.
Never went to the bathroom.
Saturday, October 9th, 2010
Beaver Game Day!!!
Well, I thought I would be a trooper and go to Mason’s soccer game (my nephew) in Monmouth, in the rain. The rain wasn’t so bad, but the drive was stupid. We got to the game, watched a bit, and headed home. Tried going to the store and we were headed to the car and I vomited. A lot. Outside of Ross Dress for Less. Sorry.
Got home, drank the other half of my constipation concoction and took a nap. The game started at 4pm and we were due at the Quirings down the street. Jeremy checked in on me and I said I wasn’t ready to get up and told him to head over there and I would call when I felt I was ready.  
He was only gone for maybe 10 minutes and my stomach was ready to explode. I run (well not run, but try to hurry as I struggle just to sit up from bed) to the bathroom, try and get my pants off, but in the meantime managed to pull on my drains, then it took my ace bandage down. Can’t go, false alarm. But now I have other issues. I call Jeremy.
He was there in minutes to see me standing there with my shorts barely pulled up, my drain balls in one hand and my wrap in the other and tears. I felt bad I had to call him so suddenly and he came home with his chili and chips in case we weren’t headed back over. He helped me get cleaned up and we went over there. Amy had some delicious chicken soup for me, I ate it, and not even a minute passed, I looked at Jeremy and said we have to leave. When nature calls and you know you took a lot of laxatives to help it along there is no way in hell I would use someone else’s bathroom. Besides it is that time of the month and that makes the whole thing worse.
Get home, get to the bathroom and sit. Half time has come and gone, third quarter is almost over by the time we get back over there. I had thought I was done three different times, showered three times, and finally my stomach was on hold. Thank god, I don’t think I could have cleaned up one more time. It wore me out. Back to Amy’s and I didn’t move from the recliner. In fact they let us borrow it for the remainder of my recovery since it is really comfy and easy to get in and out of. I am very appreciative.
Sunday, October 10th, 2010
Apparently not even your wife in pain with double major surgeries is going to keep this husband from going hunting. Bright and early Sunday morning he leaves to go. Right I know what everyone is thinking, and we all wonder still. My neighbors checked in on me at 9am, I was thankful because I needed help getting my breakfast and just getting moving. They were wonderful. The rest of the day was really uneventful, and I just laid around watching movies. Heidi and Krupp, next door, made dinner though and it was amazing. Thanks!
Monday, October 11th, 2010
Doctor appointment at 9am. They help get my bandages for the first time and boy was it hard. This is the moment I actually get to see what is underneath and how big they really are, and boy am I not ready, no, maybe this should wait. She didn’t wait. I felt myself flush and I have to sit down. The pain was incredible trying to get all the tape off and just seeing my “boobs” for the first time. She told me everything looked great and that was doing really good. I felt I was doing really well too, and it would be soon when I would be running around again. After the appointment Jeremy and I just screwed around in Corvallis, went shopping, etc and headed home about 3pm. I was exhausted and we didn’t do much the rest of the night.
Tuesday, October 12th, 2010
Puttin’ on the Pink Day! Amy came and got me around 9am and we headed on over to Corvallis to the free education day that Samaritan Health Services puts on. It was a great day, a long day, but a great day. I iced a couple of times during the day and that was a head turner, but I had to. Ice is my friend.
I got home about 4pm, took a nap and Jeremy was home at 5pm. We were headed to Philomath High School for their Volleyball Pink Out night and I wasn’t going to miss it. It was fun to see everyone and be up and moving. So many gave me good wishes and couldn’t believe where I was. Hey, it is hard to keep this body down and the more you move the less you hurt believe it or not. Again, pain meds really do nothing and I think you just take them to ease it a little, but the pain is incredible, intense, and obnoxious. I can choose to let the pain dictate my desires or I can be stronger I do what I want. I did what I want. Annoyances are just that, annoying, but they aren’t incapacitating.
Wednesday, October 13th, 2010
I slept in, well as much as I could before I started to hurt all over and had to start moving. Got up, went for a walk, and just relaxed the entire day. Jeremy got home from work around 3pm and he took me to LBCC so I could call the stats of the volleyball game – my side job. I love watching the games and as long as my mouth worked and my eyes could still see there was no reason I couldn’t go to the game and call stats. We stopped first at my offices and Amy’s office to say hi and I felt incredible. I was bragging because I could virtually function and didn’t feel any pain. YES!!! I was getting out of this fast and it felt good.
During the game I had some issues, but Jeremy got me some ice, and wrapped it around me while I was calling stats. I imagine it looked pretty funny, this big guy wrapping me with saran wrap to hold on to the ice while I was just lifting my arms and bobbing my head back and forth calling out the stats so Nicole could get them in the computer. It worked and it does take a lot more than that to distract me.
Thursday, October 14th, 2010
My mom came over and she helped me wrap Jeremy’s birthday present. I had gotten it for him before and had it hidden under the bed and in the closet and couldn’t wait to get it wrapped so he couldn’t figure out what it was. His birthday is on the 19th, but he would be out of town the following week so wanted to give it to him then.
I laid around pretty much the rest of the day, I felt off and couldn’t figure out way, but I just needed some rest apparently. Jeremy got home, opened his gift, he said he loved it, and then Amy came over for a bit. We talked for quite awhile and when she left, Jeremy and I went for a walk. I love my walks. Again something just didn’t feel right at all and more pain was starting to be apparent when I should be going on the down side of this thing. I was having a hard time moving my left arm and the pain was incredible. I ignored it and we went to Bingo night at Applebees with Jamie and Corey (starting to be a tradition of sorts), and Joel came too. It was fun, but I was just in a funk and it was annoying.
Got home, went to bed with this annoying pain.