Wednesday, November 23, 2011

You finally get to hear from the patient for a change!!

It seems I have been in the hospital for so many of the last posts that Jenn or Amy have done them for me. Or, I just didn't feel up to posting due to my blood clots or brain bleed.
Well.....I'm back and here goes with my first "new post in awhile".
A few weeks ago, I had to get my blood tested for how fast it clotted and the guy that was at the er who took my info/insurance info was like....OH MY GOSH....it's you. I thought you died when you had the brain bleed.....you were really bad!  I was like....well, thank you very much......do you get paid to say that to patients?  I don't remember much of my "brain bleed"...."cerebral hemmorage" or just plain talk....it is called a stroke. But when I got the bill with all the morphine charges ....I see WHY I don't remember much. I had the most wonderful neurosurgeon who Pat just found out is a niece-in-law to Rod & Sarah Kelley. She is married to Rod Kelley's brother. I know alot of people know the Kelley's from Olney and what wonderful people they are.....but she was wonderful also......her name was Margaret McGregor. She was patient and my bleed was not bad enough to have my scull capped open to relieve the pressure. She was patient and knew to wait it out. But she straight up told Pat and the girls I was one sick chick with a bleeding brain! It has taken a bit to recover from the brain bleed but I feel I am get closer every day!! That was over a month ago and I have went from not being able to get out of a car to now driving and back to work. I can get dressed without sitting down to dress my lower body....my platelets have more than doubled from then and I am also walking some up to 1 1/2 miles. This is the first winter I am not joining the gym for the winter months....;-{  For someone who exercised whether it was summer, fall, winter, or spring, I was exercising...it is kind of like an addiction I have had to give up.
I was feeling a little odd last Friday at work so I called Dr Goswami (my #1 cardiologist in Springfield) and Jenn has touched base on that in an earlier post about what all happened that day. I am here to tell you this cardiologist is the most top notch guy I have met. I could die tomorrow and all of my family would know that my whole team of Dr's including Dr. Houston did everything they could to save me.
So.....I had good bloodwork today and I feel at about 85% well again. I got chemo and all went well. I think I could go out tomorrow and catch my own turkey for Thanksgiving but then I'd have to clean it....who likes wet feathers........but there is a turkey farm close by.......  I get chemo on the 29th AND I get to see Dr. Goswami at St. Anthony's Hospital that morning. I will have my blood checked weekly now to see how fast it is clotting to stop a brain bleed BEFORE it happens. I am back on my chemo pill called Xeloda which I take for two weeks, off a week, then do it all over again. I had one round of it before my brain bleed and had no side effects....they can get ugly but we shall wait it out and see. Most commonly you get something called hand and foot syndrome where your palms and soles peel deep layers off and it gets very painful....I wear gloves to bed and cake my hands with Udder Cream or Aquafor. My feet are slathered also and I wear socks to keep the lotion from getting all over my sheets!  I am also back on a drug called Tarceva which kills new cancer cells from producing in other parts of my body and by golly for the past 6 or 7 months it has worked!
I am heading into work today and then to Greenup to take some paperwork. It will be the first time my co-workers in Greenup have seen me since the brain bleed.....so it will be nice to see them. I want to give a shout out to my momma who had a warm coconut cream pie on my counter when I got home from supper at Jon & Lisa Cummins house for Samantha & Leslie's 24th birthday on the 23rd of November. 24.........oh how things have changed so much for me through the past 24 years.
MY Get Well cards are coming in again from alot of people I don't think about even sending me a card....and I love them....whether they have a poem written inside or just an "I am praying for you" note, they are ALL appreciated and sometimes what lifts my spirits back up to fight this another day.            
One last thing. While Pat & I were at Neimergs yesterday, I received a call from Donita Polk Schrey who works at Prairie Heart in Springfield but also sees patients in Olney on a monthly basis (I think it is monthly). She called to see why I hadn't called her to let her know I was in the hospital all weekend.
She is always volunteering living quarters if the girls need somewhere to stay. I am not even a patient of Donita's but she was a year older in school at ERHS and we briefly remember/knew each other back then. She is just such a genuine person  who God sent my way to help look after me. She was actually in Olney all weekend due to an aunt dying but she STILL expected a call. She is also at the VERY top of our favorite Nurse Practioners list but more important she has shown how much of a truly genuine person she is who cares about our family when we are not even a patient.....she works with Dr. G (same building) and used to live in Olney as her parents/and mother-in-law still do.
I am truly Thankful this Thanksgiving for my husband, Pat, who is always there for whatever is thrown our way, my girls who have shown me they are older and wiser than I give them credit for and are also ALWAYS there for me. I am thankful to see my grandaughter Braeda Lynn smile and coo at me at (seven weeks old) or grandaughter McKenna Grace say Ja~Ja for the first time) which is what she calls me. I am thankful for my housekeeper Connie, who I could not live without. I am thankful for each leaf that falls and I get to see it float to the ground...I am thankful for my fireplace which I hope to be able to use very soon. I cannot wait to see that first snowflake. It is the little things that mean so much to me right now. I am SOOO thankful for Jean at my office and I would also have to mention Terri (from Weatherization and to Denny for loaning her to me) and Lauren who work there. I am thankful for my family (mother, sisters, brothers, aunts, cousins, etc.) who call or think I have to get out on the weekends to shop/eat lunch,  just take a drive, or coe over for coffee and good conversation. I do think it is what has helped build my strength back up.
I am saving the MOST important for last.
God has been with me through all of this cancer......He has spoken to me three times since I have gotten the monster tumor. He told me He will be there for me and He is right beside me. IT has taken the fear right out of me! The best thing, I have had no daily pain or even monthly pain. My lab numbers are mostly all good and even my liver numbers are normal but one. My oncologist said yesterday he talked to my Dr in Houston and they cannot believe I am stable/and that my tumor is slowly necrotic (means it is dying slowly) at level 4 cancer. I am not in the books at stage four cancer of intra-hepatic cholangiocarcenoma......God is the reason. He kept me going to the gym and in good health (well...30 pounds over weight but who's counting) and it helped ward off symptoms for the appr. 4 years I had cancer and didn't even know it. I may not be eligible for a re-section....but I am still stable....nothing has changed.  Thank you God because He truly is with me.
Will it always be peaches and roses....it's not now...but oh it could be so much worse if you know anythng about this disease. My priest asked me (before I got the word if I could have a resection or not) and this was a Saturday night at Mass. I was to find out on Monday the answer. Well.....the call came and as most of us know, I am not a candidate. I told him I would do what God guided me to do....so whether at this point I just keep tugging along fighting off clots and stopping brain bleeds BUT I am stable and feel better daily....or if I consider the clinical trial at Barnes Jewish...we shall see. The clinical trial may start as soon as January but I will also consult God first, then all my drs and make a decision from there.......One day at a time......one day at a time!!  You all have a blessed Thanksgiving and pick out something even small you are Thankful for this Thanksgiving....one of the things I will list is of course, is all of YOU! Peace be with you all~
Patty

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