Some Sunshine!!!

I had a several dr. appointments last week.  It is amazing how differently each one can view the same situation.  I came away from one specialist feeling completely hopeless...but ended the day after another specialist who gave such a different opinion and my heart felt so much more peace.  That day, he was talking about continuing the IV nutrition (called TPN) and some other IVs.  I just felt like I needed to ask him (and basically BEG him) to just unplug me completely and allow me to try to eat on my own.  The TPN had been making me violently ill and I was getting the strongest IV anti-nausea meds that there are.  I just didn't feel well at all and had dropped quite a bit of weight. 

Anyway...he let me get rid of the IV's and try a week with NO extra medicine...and it has been WONDERFUL!  I haven't vomited even once since that day and have been able to eat.  Matter of fact, I have been starving and have even had to wake up in the middle of the night for a snack.  Just this week alone, I gained 8 pounds back...which was needed!!

I have the sheer joy of our wooden friend Pinocchio as he exclaimed "THERE ARE NO STRINGS ON ME!!!!!!  Though I technically still have a drain...at least there are NO IV's.  It was so hard to push that IV pole on the carpet around my house, plus carry a separate 15 pound back that held the TPN and pump, plus carry the wound vac unit.  I felt 115 years old and just needed to unplug so that I could FEEL a bit more normal.  I was worried I would crash, but wanted to try...and it worked.

Momentum has shifted and each day I am getting stronger.  I still have a hole in my bowel and an open hole in  my stomach that goes from the outside to the inside of my abdominal cavity.  I am still very weak and tire easily, but....I can see the SUNSHINE!!!!!  Mental strength is half of the battle in these cases, and I feel so much more able to carry on!

I even got to go walk around target until I almost passed out.  That was my FIRST time out of the house other than the HOSPITAL in over 2 months.  Yesterday, I even drove myself to an appointment.  I had been so medicated and weak that I hadn't driven in months.  These might not sound like much ...but to me they are HUGE LEAPS in a positive direction.  I have a long way to go...but I am on my way!!!!!!!

Kids...and their unfiltered HONESTY

The night before last...my dear Addie and I were snuggling in my bed.  We used to do this all of the time in the morning, but I have been too sick and sore to snuggle for the last few months.  She was thrilled to be able to cuddle again and we resumed our usual dialogue.  She always asks me to tell her stories about when she was a baby and when I was in the hospital. 

I told her a few of her "baby" stories and she said it was her turn.  She said she was going to tell me stories of "WHEN I was still her Mommy, and I had long hair, and I was still beautiful."  (do I even need to comment on the emotions I felt at that time?~)

More ill than I have ever been in my life...

I know I am overdue in posting but I have NOT had the energy AT ALL to even sit at the computer...or try to use the laptop in bed.  Much has happened since I last posted, but basically I tanked.  My body couldn't absorb nutrution...the perforation in my bowel isn't healing...there are complications, a million trips to the hospital, more vomiting than when I was on chemo, tons of tests, lots of pain, round the clock IV's, and a new pump to carry around that infuses me with 24 hour IV nutrition through my port, and SO much more.  There are still no answers for the problems...and it all continues, but I promised myself I would blog today.

This little "mishap" by the doctor of accidentally perforating my bowel is proving to be a disaster.  I have lost yet another month in my life...and am nowhere near healing.  I am not a candidate for surgery as I am still to malnurished and my tissues area all too weak to hold stiches.  I am just praying that I can stay home...as I teeter on the verge of being readmitted.  I am praying that I can heal...quickly.  I SO badly want to gain strength and start my recovery that is so long overdue.  Many tears have been shed this month...tears of pain, tears of frustration, tears of confusion... I am still here...but my mind and body are getting tired.  Other than the hospital and my house, I have not even been into a public place in over two months.  It has been 13 months that I have been sick...10 months since I have been diagnosed with cancer...and I have held on strong.  This set of circumstances has pushed me close to my breaking point.  I just wish I could go to sleep and fast forward time... so that I could wake up and be closer to whole.  My family needs me...and I need myself to come back.  (that might sound strange, but I mean it...)  I am not depressed as this sounds...but I AM exhausted!!!!

Back home...my new home decor

I am behind in updating, but it has been hard to make time/energy for the computer.  I got released from the hospital on Friday evening after another 8 day stay.  I had to immediately start home IV antibiotic treatments, so the home nurses trained me to do those that night. 

That leads me to tell you about my new addition...I am the proud owner of a new IV pole.  Yeehaw! :)   I have to give myself IV infusions at 9 am, 11 am, and 9 pm for a total of 4 hours.  It doesn't sound like much but prepping for the infusions, doing them, etc...seems to take up a bit part of my day.  I also have to go to the hospital every other day to get the dressings for the wound vac changed.  It is a pretty uncomfortable process and I dread it... I am getting tired of abdominal pain.   They are guessing it will take at least a month of wearing the wound vac 24 hours a day for the wound to heal.  I pray that it heals well.  It is in the center of my stomach where my belly button should be.  That is in an area where your core is constantly worked...it needs to heal well. 

I found out yesterday that the surgery they did to fix the bowel perforation "mistake" by the doctor didn't hold because of my weakened condition and is now leaking into my abdomen.  There is a drain there that the doctor had left from the surgery, luckily, so it is catching some of it.  My body is too compromised for another surgery so we are going to try to watch it, and hope it heals on its own, but if the output in the drain increases too much, I will end up in trouble and back in the hospital.  I am praying so hard that it will heal on its own and that there will be no more complications.  I am a nervous wreck...just getting though each day.  I can do this...