June 2011

My UTIs continued.  I was sent to another specialist.  I saw the urologist mid-June.  They took an urine sample but did not send it the lab for testing as I  had been on so many antibiotics that it could possibly return a false negative.  However, their little stick said it looked like another UTI.  The pain was out of this world; it was so difficult to deal with.  Everywhere we went, we had to find the bathroom as I had all the symptoms of an UTI.

He prescribed me Vesicare - did nothing to ease the spasms and the pain.  Also during that time, I saw my Radiation Oncologist and she gave me valium which helped ease some of the spasms.  The urologist wanted to schedule a procedure at the hospital to take a look at the inside of my bladder and do a biopsy. Also I went to the pharmacy to pick up another med and the urologist had also prescribed Prosed DS - which turned out to help my bladder along with the valium.  Felt like a Christmas present.

Also during this time, I talked my internal med doc to move me to half bags of TPN.  I felt I was able to eat a bit more with a new anti-diarrhea med.  I was okay for a while and then I talked him into no TPN and removal of my PICC line so that I could get into the pool with my kids.  Huge mistake.  I ended up not being able to eat at all - the smell of food made me nauseous.

I had scheduled a coast trip for my 9 year old triplets.  It was smack dab right in the middle of this new nightmare.  I couldn't take that away from them as they had been troopers dealing with a sick mom that most of the time always said no to outings.  A friend went with us and took care of the kids the whole time.  I had no strength and walking across the room took it out of me.  I would have to rest after very short trips from the living room to the kitchen.

The next week, the home health care nurse came on Tuesday as usual.  She took my labs as usual.  My hgb (red cell blood count - basically extreme anemia) was dangerously low.  Of course it was Fourth of July weekend - so things were a little haywire with docs and getting what I needed.  I was so weak.  More later -

April and May 2011

In April I continued to have issues eating and keeping it in.  I was in and out of the hospital so many times.  More tests, more NG tubes, more CT scans and more x-rays.  The docs finally decided to put me on TPN which is a liquid feed bag with about 2000 calories of all the nutrients, electrolytes and vitamins I needed.  They put a PICC line in my left arm.  The PICC line connects with the feed bag line.  It goes for 12 hours so I usually do it over night.

One morning, my mom came over to help with the kids as she does every morning.  I was running a fever and it got up to 102.  I was hallucinating and had no strength.  My mom was calling my docs.  They were worried that my PICC line was infected as the line ends right by the heart.  They told her to get me to the hospital asap.  I could barely walk - which is a huge overstatement.  She got my walker and we got to the car door and before she could get me in I passed out on the driveway and my noggin took a huge hit on the concrete.  Thank goodness for the kindness of neighbors.  Between my mom and the neighbors they got me in the car.

This led to another hospital stay.  They took out the PICC line immediately to send it to the lab.  Turns out I just had a really bad UTI.  I stayed in for about 4 days.  I saw every doc under the sun.  They put in a new PICC line and sent me home back on TPN and IV antibiotics that also could be hooked up to the PICC line.

Things calmed down.  I just avoided eating.  Then at the end of April, I had my third intestinal block.  Back to the ER in extreme pain and nausea.  As they were admitting me to the ER - the smell of everything from the nurses' perfumes to the smell of the latex gloves made me so sick to my stomach.

This time around, I finally had surgery that they were trying to avoid.  The surgeon cut my lower abdomen open and went through every inch of my small intestine.  She removed 18 inches and resectioned my bowel.  I spent about a week in the hospital.  The recovery was tough.

The surgery took care of the tremendous abdominal pain but did not fix the fact that I can't retain solid foods.  My gastro doc said it is most likely that I will always have troubles with retaining food - which turns out to be true despite the meds they gave me to stave off loosing the food.  Another lovely side effect of radiation.

Throughout May, I continued to get UTIs.  I was on one antibiotic after another and nothing seemed to help.  More later -