How I am doing...

     This is a picture that my sweet Savannah took of me about 5 days after my surgery...
      I am now post surgery 10 days...So much has happened over those days I will try to get you all updated...
     Yesterday was a very long day Steve drove Mom,Dad and me back to Magee for my surgical recheck. The doctors assistant checked my incisions which are healing nicely and looked at my drainage fluid output to see if the drains that I have placed near my ribs were ready to be removed. The left drain had been putting out much less fluid which is understandable since only two lymph nodes were biopsied on that side so the right side was a much more intensive surgery. The left drain was ready to be removed, though I wasn't ready...I have gone through so many procedures...many far worse than this but for some reason I had it built up in my head to be traumatic since the drains while they have been in my body have been so painful...Steve, who used to nearly faint at the sight of anything has gone above and beyond through this process and has taken wonderful physical care of me. He was there to hold my hand, but drew the line at watching.  Let me just say it was painful...I let out a sound that was somewhere between scream, yelp, and inhuman.  The removal was fast thank goodness, but I hadn't followed the advice of others that had been through drain removal as I had my first appt with my Medical oncologist following the removal so I wanted to be lucid. That being said it was alot, I did not scream having either of my kids... I was outright shocked at not only the diameter of what she pulled out and the length of it...the drain on the outside is clear tubing that attaches to a grenade shaped bulb device that causes suction through the whole surgical area  to get rid of excess fluid that would otherwise have to be needle excised. The tubing inside is much larger than the tubing you see pictured and it is filled with tiny holes and acts as sort of a french drain to suction fluid out and down the tube and into the bulb...so in the beginning my sis and Steve were around the clock performing the painful process of "stripping" my tubes which means running alcohol pads applied with pressure down the tubing to draw the fluid from inside my chest and areas where the lymph nodes had been removed under my arms and into the tube...they would then have to painstakingly pour them out measure the content and log the measurements...when the fluid is down to 30 cc within 24 hours for 3 days then they are ready to come out... Steve watched and learned in the hospital and taught My sister who has medical training but with that being said it is even harder when you are having to hurt someone you love...But they did it and loved me through it...


Jackson Pratt Drain inserted over my right ribs

   You can see how inflamed the tissue around the tubing is, I was on strong antibiotic but the redness is just from having a foreign object in your body...and this tube sticks straight out so no matter what you do it is rubbing on something

 As traumatic as the whole  removal was...I sat up and after the rush of fluid flowed from the removal site I had a peice of gauze and tape and that was it...no stitches, nothing...amazing really... Today the gauze is downgraded to a bandaid and by tomorrow it will seal itself up. 

 

     I am really NOT looking forward to the removal of the right tubing as it is really sore it lies on my chest wall specifically where the largest tumor was and you can even see it through my skin...It is almost unbearable to touch...but come out it must some time early next week.  I plan this time to try really hard not to scream ...traumatized poor Steve...lol

    Bathing is an absolute No...Showering is extremly hard as I am not allowed to lift my arms over my head due to the drains and it is a physical impossibility with the damage to my right arm and nerves... So I have been getting help washing my hair...was so happy as today was the first day I was able to shower without help and have devised a way to creatively shave my own legs :)

   But the biggest blessing was when I got home and was able to have one tube free side for my girls to snuggle up to me for a long time last night...i would go through 1 million drain removals just to hold them like that, the feeling after having to be physically unable to do so for so many days was unbelievably sweet...

   I realize some of this medical detail is too much for some but I think it is important if I am going to be open about this that I truly represent what the experience is like... All of it...

This is a small portion of the actual mastectomy scars... they are around 10" long on each side... I am not ready yet to show what the whole mess looks like as it is still too hard for me to accept...but it is amazing that they look so good after all that has been done to me and its only been 10 days. They were internally stitched and externally glued. the glue started coming off around day 6 it was thick and sharp like superglue... and it was pinching me and scratching me but after it peeled off the wounds were much smoother the glue gave them a puckered appearance. And my range of motion was so much better after the glue was gone, after the wounds have healed I will have faint while flat lines as scars. 

This necklace is a gift from my perfect niece Sierra Starr... It reads: I am... a survivor, she ordered it for me and paid for it with her own money... along with the most beautiful note....I received it when i got home yesterday. I had ordered her one for her birthday that said... I am...perfect. They were ordered through Blank Label Project and a portion of the sale goes to cancer charity. I am so proud of this sweet person that I have the blessing of calling my niece...
     So after the drain removal we had about an hour before we met with the medical oncologist who is the person who will order my chemotherapy and hormone therapy... The radical extent of my surgery removed the breast cancer , but since it had been missed for so long there is a possibility that it has spread on a cellular level to another site, we already know through pathology that it had metastasized to my axillary lymph nodes...But there is danger that even though those were removed it could be somewhere else...so thanks to the  the 7 years or so that it went undetected  I now am Labeled an  Advanced Stage 3 Breast cancer patient... as we sat in the office waiting to go in every lady there had a scarf or wig ...
      One lady was so thin as she walked through the door to get her chemo with her pretty pink scarf on... as the nurse asked her how she was she smiled broadly and said good... I cried a little because I am that same lady...who no matter what we have been through all of the suffering , whatever we are so Grateful and happy to be blessed with life...PERIOD.
     We went back in to the office and once again I had to undress and bare my scars...by this time I was shaking with pain, having not even been so far as downstairs at home for so many days...And had nothing but tylenol since early that morning.I was exhausted and flat out scared as Chemo terrifies me... I have been mentally working on my thoughts on that....As much as I appreciate the encouraging words that say don't use the word "fight" yada yada,positive thinking, , and it all makes perfect sense... and intellectually I am evolved enough to "get" that... Come on ya'll if you had what I have you would on occasion allow yourself to be scared shitless too... That's the flat out truth... I do not choose to linger in that miserable feeling but no one in the world could have been dealt the devastating blows that my family has been dealt over the last month alone and be positive all of the time... Sometimes truth be told I want to scream "shut the hell up, you just don't know, you have not been here, and just let me deal with this how I need to".
    But even through this I am too concerned with hurting someones feelings and understand others are genuinely being helpful...But I still do want to scream on occasion...I have always been compassionate but I never had a clue, no one does until they have actually been diagnosed with this ugly disease...
    Right after the surgery I figured I would treat the fact of my breast removal head on... I kind of felt like ripping the bandage off quickly was the best approach...so all of those that were caring for me, or may need to care for me, or who cared about me ,were shown what I now look like...even my Dad... I just wanted the uncomfortableness over and everyone needed to see and feel the true gravity of the situation... and all of them one by one said they see, Jeannine, Nini, and Mom... Savannah wasn't ready for a longtime ...finally several days ago she asked...so i showed her , I said what do you think...and she said " I think it looks alot better than being dead does"...that pretty much sums it up...the scars are not pretty but life is beautiful and precious and priceless to me... and I will go to any extent to stay here with my family...And they all find me more beautiful than before...
     So ,anyways back to the oncologist appt... Steve and I and Dad and Mom sat in a room waiting to see the doc... Magee is a learning hospital so you see many people before the actual doc comes in so over and over, I was examined and questioned, and given the once over... All of the while I'm thinking if only some had taken the time to do this years ago... I would not be sitting here scarred and scared and have a sign right in front of my face reading Advanced stage 3 Breast cancer that was posted on the wall... But yet there I was... I was in pain and getting impatient and tired of feeling like and experiment, but this doc the Medical oncologist will be the one with the most important role in saving my life... as anything hiding and lurking will hopefully and prayerfully be killed by the chemo.
    So, Finally she comes in...As with my other docs with the exception of my gyne whom I am going to replace I liked her instantly... I told her of my concerns and she listened intently...I told her of my thoughts on certain chemo regiments, of some studies I had read ...and she HEARD me...and formulated a plan WITH me...
      I told her of the incessant rib pain I have had for probably close to a year.That hasn't allowed me to sit up straight and at times takes my breath away. So, finally after having complained to no less than 7 doctors over the last year I will get a full body bone scan on Monday...looking for Bone metastasis in my ribs. Which is now my newest worse fear as bone cancer is even more aggressive than breast cancer...So BIG prayers for that to not be the case...
     Secondly she addressed my fears of the endometrial polyp and debris filled cyst and thickened lining...and she not only disagreed with but overruled the gynes opinion... I am to have the repeat ultrasound of my pelvis , then I can have the d&c but ONLY if my blood counts are good...so the questionable polyp and thickened lining wil be out and biopsied,but in any case she completely outlawed any hysterectomy  during chemo...if needed which she does not feel it will be, it will be after chemo...which is fine with me , as the tamoxifen risk was what concerned me so much.I will not go on Tamoxifen as she agrees wholeheartedly that it is a risk with the lining already being thickened, and the polyp present so i will instead be put on Lupron shots which will put me into chemical menopause and then the treatment that follows will be an aromatase hormone  pill that is used for post menopausal women it does not increase the chance of other cancers.
   So, here's the plan, I will do 8 rounds of chemo... the first three months will be using the drugs Adriamycin and Cytoxin...these are the drugs that cause the nausea and hard symptoms... then I will have another 3 months of treatment using the drug Taxol...but instead of getting it once every three weeks, I will get it once every week...The newest studies show this to be the most effective I had researched it as well and believe it is the way to go...this regimen increases survival rate as well as decreasing recurrence. She explained for some reason though you are having the treatments much more frequently the side effects are easier this was as well...
      My treatments will be in the uniontown upmc cancer treatment center so I will not have to travel to Pittsburgh...the Oncologist I will see in Uniontown will follow the orders of my Oncologist at Magee, but as an added bonus the doc here in Uniontown used to work at Magee so they all know and trust her. I have an appt Monday for the bone scan, Wednesday with the new Oncologist here in Uniontown, who will set me up for port placement in my chest that will be needed as my veins are so poor...and then I have an appt on Thursday back at magee for a meeting with the radiation Oncologist to set up 6 weeks of radiation following chemo which will be 5xweek per 6 weeks...and somewhere in the middle of all of this i have to get back to Magee for the removal of the second drain when ready. Cancer treatment is exhausting the appointments alone and i am only  beginning so i pray for strength...
    I should be starting Chemo roughly March 18th which will be one month post op from the Bilateral modified Radical Mastectomies... It will be a grueling schedule for me as with my other issues I spend so much time at home... So I will be praying for God to give me the strength to make it there and do what I have to do to live.
    So, I am okay with the plan, and will resolve myself to it as God is ultimately in charge anyways...
    Just to touch briefly on the way I am feeling about me, I am handling things pretty well... I am not afraid...as I have faced so much that theres not much left that scares me...chemo will soon be checked off that list... As far as my body, The initial shock of the incision were horrifying to me, they looked so much like something from the walking dead that Tori asked daily to look at them because she thought they were cool...lol as the glue peeled and they smoothed they look better even to me. But it hurt me and still does on occasion, not just the surgical pains but to look at the girl in the mirror who has to suffer so much to be able to try and survive... I feel bad for her... but I do not pity her as I am stronger now inside than ever... What woke me up and changed my mind about these scars was the looks of love and admiration in the eyes of those that have seen them... My husband has more love in his eyes than ever and my children as well... I have been told by all that i am me only better...
      I sat in my room and created the other afternoon...and had forgotten momentarily that I was that girl in the mirror with those scars... I had a pain in my breast so I reached down to feel what was wrong...and was again devastated to realize that part of me was not there anymore. The phantom pains fool you...
     But I do feel stronger and beautiful on the inside than ever... just will take a while and some more self acceptance to be okay with what I have on the outside...I am not ashamed i just want to feel strong when I look in that mirror and no  longer feel sorry for the girl that is suffering.
   Last night I was able to hold both of my girls... last night I was able to tuck them both in and use my arms to cover them... This morning I woke up my sweet Tori , picked out her clothes, dressed her and did her hair...and the beaming smile of appreciation  to have her mom back was worth every pain it cost me to use my arms today...
    I will go to the ends of the earth to stay On this earth... I am so blessed with all of my wonderful friends and Family... I have the worlds most incredible husband who finds me far more beautiful and desirable than ever and uses the  word amazing to describe me... and I have my sweet girls...what more could I ask for?

I love you all... and I will update again as soon as I am able...