Wednesday, November 12, 2014

It's Me

October has come and gone and I didn't update once.   There were so many times I wanted to or thought it was time for an update, but to be honest, I was extremely busy taking care of myself that I just couldn't.

October started out wonderful with a great turn out at the Making Strides walk.  I again had over 90 walkers and I raised just over $6,000.00.  I saw a lot of friends and relatives I haven't seen in awhile.  Some high school friends that I don't think I have honestly seen since high school.  It was just cool to have the great turn out.  I was asked to speak during the survivor ceremony.  I always get nervous, but when I start to tell my story, it just spills out and I barely need to use my phone which is what I use to take notes.  I did not partake in the actual walk this year because I didn't want to get stuck out on the track and not have a way to get back.  So I stayed back and visited with several of my aunts that didn't walk either that I don't see often enough.

Later that day I was to my parents to eat and take a nap since Jess was in with her boys.  As the day went on my pain became quite severe that I ended up in the emergency room.  All they really did was get me IV pain meds to get ahead of the pain.  That night I had asked mom to stay the night with me because my pain was so severe and it helps to have someone be miserable with me.  Kidding, I needed my mommy.  We were up a lot of the night trying to find ways to get me out of pain.  Nothing was working!  The next morning just got worse and made my pain become numb.....Mom gave me the news that my grandma Freeland was very ill was not going to make it.  This was terribly hard for me to hear.  One of my very first blog entrees was written about her (Living Guardian Angel).  I was so sad and didn't know how I was going to survive and continue to battle this cancer without her daily or more like hourly prayers, her handwritten cards and the masses she requested for me at her church.  I was able to FaceTime her (yes she is very technically savvy) and tell her goodbye.  She told me how proud she was of me and that she loved me very much and didn't plan on giving up on me.  What made her passing special was a lot of my cousins and aunts were in town for the walk so they had just seen her or were with her while she passed.   Had the walk not been that weekend, some would not have seen her in awhile and would not have had the closure they were lucky to get.  I unfortunately did not go to her visitation or funeral.  I wore myself out from the walk and have a feeling that was some of the reason I had so much pain.  So I thought that Grandma would probably of been upset with me had I gone so I stayed home and just got updates from my sisters and mom  So Rest in peace Grandma Freeland.  I think of you daily and hope you are putting in a good word for me.

The following week I had a radiation to be continued, a thorancentisis scheduled for Tuesday and CT scan to check the status on the cancer.  Monday during radiation I cried as usual because it is just so painful to put my right arm over my head for 10 plus minutes.  After that treatment the doctor and I spoke and we decided I had had enough and that would be my last treatment.  The thorancentisis went as planned.  I hated it like usual but it was done and over before I knew it.  Thursday was my scans and we all know how I feel about those.  I was worked up and anxious but had an appointment with Dr. Phillips that following Monday.  I woke up the following Friday and was very short of breath.  To the point that I could barely talk because I couldn't catch my breath.  So off to the emergency room mom and I went.  We discovered that even though my lung was drained 3 days before, it still had fluid and needed drained.  It was explained to us that from doing the previous 3 thorancentisis it had caused my lung to form pockets (caused from scar tissue) and within the pockets fluid was accumulating and if they didn't put the catheter in the right pocket, we weren't guaranteed to get the fluid.  So I talked to a plural surgeon and he decided that I needed admitted to the hospital until Monday.  He wanted to place a drain in my side for the weekend to drain as much fluid as possible and then on Monday place a different tube that would allow someone at home to go in and tap my lung and drain it when I felt it was needed.  So as upset as I was about the admission to the hospital I was okay with it because it was very scary not being able to breath.

The weekend went by fairly quickly. I had lots of visitors and Don, mom and Whitney took turns spending the night with me and add dad and Wendy in to the above all made sure I was never left alone.  And all did well with making sure Justin went to his soccer games and Ryan was cared for.  I do not like down time or alone time at the hospital so the visits were great!  Monday the procedure to switch out the tubes was done under twilight sedation but I don't remember a thing.  Next thing I knew I was going home.  But I wasn't going home alone.  I unfortunately was also going home on oxygen as I am unable to hold high enough levels.  I also was not going home without the assistance of a Home health care company who would come out and train mom, Don and Whitney on how to drain my lung tube.  I also want to add that Don and I received some devastating news that my CT scan revealed that the cancer has moved to my left hip bone and also a small spot on my liver that is not guaranteed, but more than likely is cancer.  So this going home was great because it was back to my safe hiding place where no one could hurt me with bad news.  But really with everything else going on, I have to say that Don and I took the news with stride and just moved on.

After being home a couple of days, the home health care company came out to do the first lesson on setting up the tube to drain.  We hooked up and did not get any fluid.  This was not considered abnormal because I was just drained for a weekend.  So it was decided she would come back after the weekend and try to drain again.

Next, remember my chest has a wound?  I was seeing the wound center biweekly to ensure I was cleaning and using the dressings correctly.  This had been going on for over a month.  The radiation that was done was not helping because the skin on my right breast was not looking good.  It went from skin color to almost black in a small section.  According to the wound center, this was literally burnt skin and was probably dead skin.  But keep it clean and hopefully we could get it back to normal or close to it.  Saturday of that week I had spent the night with mom and dad the night before. While cleaning my wound, mom came in and we noticed that what we were told was a blister when I was in the hospital looked to my mom as my actual implant.  There was no way right?  So we called Dr. Phillips and she had us directly admitted to the hospital.  But you know I have learned through this that most surgeons and Doctors don't work on weekends.  (No offense) So I was admitted on Saturday and saw a plastic surgeon on Sunday morning who confirmed it was in fact my implant coming out of my skin.  He stated he could not do anything for me on Monday but could on Tuesday. We all thought it was best that I stay in the hospital as I was at a big risk of infection.  So again family set up shop at the hospital to keep me company and my spirits up.

On Tuesday the doctor came in and discussed the surgery and explained if all went well I would be going home an hour after the procedure.  They were running behind in the OR (Operating room, see I think I am a doctor or nurse) so my pain meds had worn off, imagine that - it happens often when at the hospital.  At first they did not want to give me anything but eventually after seeing the pain I was in, they gave in and gave me something.  The surgery went as planed, but in recovery, I was in horrible pain.  I remember laying there screaming at one point.  When I got up to my room, I didn't even have to ask, it was decided I was going to be held up at the hospital another night.  That was fine with me because as the night went on, I could feel my hospital gown getting wet.  The wound was draining and had this happened at home, we would have ended  up in the ER.  I would much rather have my caring nurses at that point than the ER doctors who didn't know my situation.  Even Wednesday I woke up and wasn't sure I could go home.  Dr. Phillips and I decided we would wait until 3:00 to make a decision.  Even at 3 I wasn't up to it, but I knew going home meant my bed, me controlling my medicine and my family!  So home I went.

Being home a week was great until last weekend….I started getting short of breath.  Last Thursday I noticed my left foot (opposite foot of cancer side) was swollen at the ankle.  Those that saw me when I was pregnant….Just like that.  So Friday when my home health nurse came over she called Dr. Phillips as they were both concerned of a blood clot.  So as you can imagine, my mind was going nuts.  I went to the hospital and was told an ultra sound and CT scan were ordered STAT (results to be read asap I think?) and that I was not to leave until I had results.  So ultra sound first - no clot (Thank you GOD) next was the CT scan and again no clot but LOTS of fluid.  Remember I mentioned the home health nurse was unable to get my home drain to drain fluid?  We discovered that the catheter / tube was placed in the wrong pocket and the fluid was actually accumulating in the other 2 pockets.  This caused the shortness of breath, but no explanation of the swollen foot and I think we were so relieved to hear it wasn't a clot that we forgot to ask why the swollen foot.  So I was scheduled for this Monday to have th fluid drained and the tube to be moved.  That procedure went well and tomorrow they will try to tap the drain and get fluid so please please please pray we are in the right spot and we can start draining from home.  I hate the hospital with a passion and could really use a break.  3 surgeries in 3 weeks was not in my plans.  Because of this, I have become very very weak and on top of it all, I am still doing chemo.  Which is scheduled for tomorrow.  YIKES!!  So prayers for strength and lung fluid is needed and we appreciate it.

I do have home health care coming out daily to clean my chest wound where my implant was, they also will try to do the draining every 3 days.  They also have a physical therapist that comes out twice a week who is helping with my right arm since I have somewhat severe lymphadema in that arm and my range of motion is horrible.  Also they are working with my legs to help build up strength.  So I am keeping busy at home.  When I'm not doing this, I'm resting.  I have grown to be used to the oxygen and feel somewhat dependant on it which I do not like.  I have not made any outings besides doctor appointments as I get some anxiety that the tanks will run out and I don't like the looks I get.

Well, I'm off to have some pie.  It is Don and my anniversary (9 years) so we had Japanese food and pie to celebrate!  We thank you all for checking in on us and don't stop, I promise you aren't bothering us.  When we get a text or call it brings a smile to our face to know you are thinking of us and rooting us on from the side lines.  And the food!  Wow!  Overwhelmed and could use some of these recipes.  That has been great!  Prayers please for lung fluid and strength and for chemo to go over without any problems or rob me of any strength.

Love to all!!

Amber

P.S. The blog will not spell check so bare with me because I'm typing with a numb right hand!