josied's Cancer Blog

January 19, 2008

The Other Shoe

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In the days I/we had figured out how to move forward and that laughter and prayers were going to be our greatest allie throughout this fight….the other shoe dropped. My complete pathology reports came in and yes, my left breast mild ducts were covered in DCIS, but in the midst of that tissue there were 2 mm of invasive IDC cancer(invasive), lymph node involvment not likely, but it was very aggressive in that a protien HER2 which attaches to cancer cells and causes them to multiply at an even faster rate….so I had zoom zoom cancer. Mastectomy was my only choice with full course of chemo and then maybe radiation.

This brought a new thing to the table with it no longer being stage 1a it was now climbing close to being in the 2 category. More tears, more fear, but really I did not feel helpless I tried to laugh more than cry and research and read. People sent me books, my Pops, Mom and my Sister sent me books and articles etc. During this time prior to my mastectomy surgery I had come to the conclusion that I would do a bilater mastectomy. My understanding seemed in more cases than not DCIS showed of 5 years later in Breast number two, plus I had the lovely HER2 factor. I talked to my surgeon, whom by the way is a man(I am a female Doctor gal), but he was and is tremendous how he handles you and your family and this cancer reality. Doc and I talked and he had not recommended a bi lateral Mas to me, but when he heard my words he was in complete support no questions asked…....plus I had decided to have immediate reconstruction. My thinking at the time was they will already be in there and this is one less surgery. I did not realize the level my immune system had been beat, it was I found a little too much for my system to take on so much…..!

Getting your boobies cut off as I was always calling it is a big deal…..and yes not making light it absolutely is….my parents, my sis flew in from ct, my brother and his wife all there for my surgery….The nurses at my hospital whom were preparing me were so incredible. MY sons Father had sent me “the love monkey” to take into surgery with me and it was very important to my little boy that I take that to the hospital with me. We were all laughing the nurses, my whole family crammed in this little pre surgery cube and I became suddenly overwhelmed with the reality and gravity of the situation….I got a bit like well hyperventalating…..one gracious nurse Monica held me close and helped me get my breath back and to calm before we headed out. I was able to laugh and cry again after that with my family whom you know just do not know what to do, but want to make this all just go away. It is very hard on them to watch you and also be scared of all the whatif’s. I was being wheeled off Monica the sweet nurse stayed with me and I remeber gentle tears flowing in a peaceful way…....I had to get this cancer out of me and that was the only choice.

I woke up from the surgery as I remember happy and well a little on the arrogant side. I insisted my Sister help me out of bed with my Ivs etc. and I wanted to see it….the nurse came in and said no the Doc wants you to wait to see him first….I explained that I was not doing this for the Doc and it was my body and I am the boss so to move out of the way and I will see….and I did…with my bum showing to all…..I know a sight my family will never forget me fighting for what I wanted bare butt and all :)! It was fine, it was not so upsetting to me I think knowing that nasty cancer was cute out and this is the way it is was reality and I could handle it…! I also, did have expanders put in, which is what the Plastic surgeon puts in after the tissue removal to help grow more skin for future placement of implants etc. So I had breast mounds just not nippled etc. plus I had a chunk from under my left arm taken (lymph nodes).

Next, what I would find out about my no it is not cancer, no it is not invasive cancer, ooohhh yes it is cancer and yes it is invasive cancer and no it is not in the lymph nodes…..guess…it was in my lymph nodes 3 out of 11 pulled….that tiny 2mm of invasive cancer had already spread to my lymph system….the invasive cancer that was in my lymphs was larger in size than what was in my breast tissue. all in mm but larger amounts…..what that told me for certain was this cancer wanted to dance all around my body if it had the chance. Right then and there I thanked God for that Mammo and the previous Mammo’s In Ca for otherwise we may have said lets watch this for 6 months and most likely in my cast that would be toooooooooooooooo long and tooooooooooooooo late.

There was good news. I made it through the surgery no problems….I liked my morphine drip on command while it lasted(24 hours) and my right breast tissue was completely clean….no enemy cancer….hooooray!

THIS IS VERY IMPORTANT…..get copies of all your labs, your pathology reports, scan reports etc. you will want to go back to them in so many instances as you start to understand your DX more and you will want them to be able to share with Doctors, patients maybe just keep it…I keep a notebook with all that info in it and continue to keep scan info and blood work today in it. I was also able to get many of my pixs and films on disc to keep with me as well…..!

Next I moved on to making a choice for an Oncologists. My surgeon made a referral and unfortunately my Sister in law’s Sweet Mother was going through this 6 months ahead of me and she seemed to really like her Oncologist(whom was the same lady). I did some research and reading about her we had a consultation and I said not when but right now to the chemo(it was a standard protocol I had already familirized myself with and was scared to death of….but lets do this)...we had to wait a few more weeks for my surgery healing…in the midst of this after I had gotten 1-2 fills in my expanders I began holding fluid around the left expander…..Doc2(plastic surgeon) was having a hard time removing….we got most of it out…..within a day or so I looked down and a red, heated infection was literally crawling across my chest. Emergency get to LIT have surger first thing in the moring to remove those boobies….again.

Well, thankfully we got through this and although I had a new concave strange looking chest….there was not further infection and I was soon able to begin Chemo and would deal with reconstruction later. In the midst of all of this I was working hard to arrange a second opinion on my prognosis and treatment….which I had been told was good. I decided on an expert with Sloan Kettering whom had done a lot of research in premenapausal cancers(me) and agressive cancers in regards to HER2 protein and the herceptin treatment(which in my cancer which is not considered mestatic or in high stages I was staged at 2a…had just begun being used in my curcumstances, 6months to a year earlier you have to be going through either non responsive to treatment original cancer or a metatsized cancer so cancer number 2 in a way to get to use this drug. Certainly, I can say I was so thankful for this.

I had my first chemo Adrimyican/cytox AC as is called….and I was given all the meds to keep you from getting so sick. I was fine through the 5-6 hour infusion, made it home on the 1 1/2 hour drive got in bed, laughed, fell asleep and woke up thorwing up so very bad. My parents were asleep upstairs in my house and had given me a bell….I rang the bell I tried to go up the stairs, but could not and just sat there trying to get them to hear me…I was vomitting so harshly I thought I may choke. My Mother did hear me and came and got me and a bucket in bed and was with until daylight. We called my oncologists, by this time she wanted me in LIttle rock immediately I wanted to go to my local er and have her send the orders b/c I did not think I could make the ride. After sitting in a room shaking from dehydration for an hour my Pops got me put me in the car and floored it to LIT…where they met me on a lower level where the chemo lab was and hooked me up with good stuff for a good part of the day.

Again, I started researching and learning about all the variety of annti nausea meds and how to time them out to keep you from getting so sick like that…this is how it works with standard insurance they want the Doctors to use the least costly and somewhat successful meds before they pull out the big guns. This just disgusted me…..shouldn’t I be the one with the option?? I am paying for the insurance, paying the co pays and the out of pockets…..and in the past have always been senstive to POISON! I came with my list of meds for my Doc the next treatment and she totally agreed…...she is a great Doc believes what her patients say and does not believe there is any reason for you to have to suffer or be in pain if we can keep from it at least through all of this treatment. Not all Docs are like these, I know those whom have had Docs who dont listen and act like it is in their head and do not want to give them the meds that will work for them….it is a different cocktail of meds for all of us we are similar in our chemistry as humans, but vastly different.

Before my next chemo I was going to NYC to Sloan Kettering with my Brother and my Sister(she lives in CT close to city) to get my second opinon. This trip was fun for us….we were silly….we went to David Letterman I wore my new long black wig(my Pops calls my Elvira wig) and it was so fun I felt like the mystery woman and although at that point I believed I had Cancer tattood all over for everyone to see…..no one was the wiser I was just a lady with long dark hair. My hair was just starting to thin from the chemo….but I had already gotten my wigs and wanted to show them to my Sis.

The specialist in NYC was in almost complete agreement with my Doc. There was one drug that was a sister drug in my second chemo protocol that was going to be used and he recommended the sister…they left if up to me….and there was still a question as to whether I would have radiation…he said no question full rounds of Radiation b/c my margins were clear, but the cancer had been right at 1cm from my chest wall and very aggressive…no question to do radiation. My Doc had also concurred with this once they had spoken and reviewed my case wholely once more so we had a plan and it was going to take a year and a half….hellllllllo!??? Yes, thats right 4 a/c chemos every 3 weeks and 4 taxotere/herceptins every 3 weeks with an additional year of herceptin infusions…..in the midst of this we would attempt to do my 35 or so radiation treatments if my body could handle it!

One thing I want to emphasize at this point is every hospital, lab etc. has a different “standard” for clean margins. Clean margins are how far out beyond the cancer site they go and find NO Cancer….you want that to be a desent size….some never get clean margins. This is something worth researching and comparing to other cancer centers what their standard is….I personally believe there should be a standard across the board…that way one being DX in NY and one in TX test results etc. are understood correctly by all….second and third opinions are very important. There are many cancers out there….there are many combonations of drugs to try…..find what is best for you…..do not be afraid you are your best and sometimes you only advocate.

I have to say I was lucky during the hard core chemo treatments( the first 8) I had few set backs. I had low counts, never so low where they would not do my treatment. I did the horribly expensive injections the days after chemo that made your bones just ache. Really the first few days after chemo were a blur to me….I always told my Mother do not let me talk her into letting me go try to make purchases etc. during this time…my desicion making ability was highly questionable at those times. A/C would kick my but for 7-8 days literally getting back together and BAM its time to go again. the Taxotere/herceptin was more 5 days and functioning better….but bone and body aches….really wore me out. No matter, I did try to go to chemo and laugh and smile…what other option do you really have…..being angry just makes it harder for everyone. It is ok and natural to be angry I found going under water in the bath tub and screaming and kicking always made me feel better…..plus my little boy was at home I did not want him to hear me screaming….its a fine line with a child….he was and is very aware that something is going on and not right…Momma is not dancing and singing and running around like that crazy chicken anymore….he learned Momma was a bit physically weak and a lot of our time was more quiet than it had been before, but I believe he always felt secure that I was there and his family surrouned he and I in love and support…I am certain he has had worries, but believe he has known everythings gonna be allright….he would often ask me where is God and I do not like the dark….and I just tried to tell him God is everywhere….just put those worries to him, ask him to take your hand and help you through….one night I looked in his room he was in his bed lying down holding a hand up in the air….his faith and trust in that Supremecy was evident and it was helping him.

I am going to end this blog today saying its tough and people want to help and it is hard to ask for help….if you have the ability to help a person going through cancer truly the best thing and I know it is hard it to just come in and do it…cook, clean, change the bed linen, etc. do not ask how or why just let them know I am here and I am doing this….in most cases they will be so thankful. And phone calls, dealing with organizing bills and insurance papers etc. boy if you are close enough to the person sitting down and spending an hour or so each week on this is so helpful….b/c you are no where near 100%....I found as a single Mother of a little one I was all there was and I was a bit of a withering plant and I struggled knowing how to ask or accept help…..in my situation I wanted my son there with me, but I needed and need to heal and get a lot of rest….so people helping in ways like picking him up from school taking him to a movie etc. I was very cautious about getting out…b/c prior to cancer DX my immune system was blown anyway. I did end up with pneumonia last April…..that was a bummer!

I hope this blog is beneficial to someone anyone….if nothing else to purge this is great form of catharticism for me. By the way, I have been out of treatment for right at 6 months and I am getting scans every 3 months and my second set of scans just came back NED...I have been finding it very hard to say I am well, I am in remission, and get on with it….and I know this is ok and that I will get there…..I have said it a little more this week….fists up we can never give up…..unitl next time!