Call back from gyno-oncologist office

I received a call back from the gyno-oncologist office yesterday regarding the chemo cream burning the tar out of my skin.  They suggested to go from every 7 days to 10 days to give my skin more time to heal.  They want to see me next week - so I was lucky there I already had an appointment scheduled for next Wednesday.  They also suggested using desitin - yes the one you put on baby's diaper rashes.

See this is where I get really pissed.  One, I hate going to that office - they always hurt me in some way that I leave in tears.  The doc is fine - he is just doing his job which is trying to save me from getting cancer again - but dang it hurts.  Really , desitin? - like that will solve the world's problems - but I am trying it.  Problem is that the bladder cystitis is like a super bad UTI - so you are using the ladies' room every 45 minutes to an hour.  Thus the desitin cream doesn't stay around very long.

I often think if these docs that I see were treating their families for the same thing, would they prescribed the same treatment of care? 

Off to hyperbarics - which is another one of my least favorite things to do is drive there an hour, sit in treatment for two hours and drive another hour home.  By the time I get out of treatment, my bladder is out of control with pain - thank goodness for morphine.  Lying down is the only way my bladder stays relaxed - sitting and walking puts too much pressure on my bladder and it hurts.

Okay - enough whining!  Other than the above I am in a decent mood which counts for something good.

More later -

Treatments and HPV vaccine

Happy Monday!  Not!  My internal chemo cream has burned the tar out of my skin.  I have a call into the nurse as I have 7 more weekly treatments to go and I just think I cannot do it.  Sometimes the treatments are worse than the cure which I know to be the absolute truth. 

Between getting up every 45 minutes to use the ladies room every night and go all day long really bites as it burns like the dickens.  And I never get a good night's sleep - can we say fatigue?  It really interferes with your life when you are trying to function somewhat normally.  Then add in morphine and valium to top it off - try functioning normally.

I know there is much controversy around the HPV vaccine.  Children can start getting the vaccine at age 11.  Personally, I plan to have all my children (two boys and one girl) vaccinated.  I do not want them to ever go through what I am experiencing.  It would break my heart.

I did see a special on a show called "Second Opinion" which airs on PBS regarding the vaccine.  They believe that the vaccine is only good for 15 years.  I still need to put in a lot a research in order to make the best decision for them.

I currently have a call into the gynocological oncologist and the doc that does my feed bags.  I need help with the chemo cream burns.  And I need help with TPN.  There are such things as half bags - hopefully he will be happy with my weight gain (Thanks to Coca Cola) and allow me to go to half bags.  I am hoping this will allow me to get a bit more sleep.  Grasping at straws right now to find the right balance.  More later -

After cancer treatments

After you are treated for cervical cancer, you get pap smears every three months for the first two years and then every six months for years three thru five.

As my luck would go, I have never been declared in remission.  My first pap came back bad which was expected as treatments had just ended.  My next two also came back bad - still showing high grade dysplasia.  After the third one, the gyneological oncologist decided to do a laser treatment.  This was done in the hospital.  They do not go very deep as the wall lining is thin and can damage the rectum wall - very dangerous.  The next pap went from high grade dysplasia to carcinoma in situ.  Not good as it is one more step closer to recurrence of cancer.  He started me on 12 weeks(once a week) chemo cream.  It is not terrible - but does cause a couple of days of irritation.  The doc told me it shouldn't cause any irritation - but if there is a side effect, I will get it.  I go back to see him after my sixth treatment - which is in two or three weeks.

I also saw my Radiation Oncologist a couple of weeks ago.  I asked her if many of her patients have all these problems that I have experienced.  She said no.  She said I was high risk due to my Rheumatoid arthritis which has vascular issues and can cause the radiation damage to be more severe.  I also asked if I could get more intestinal blockages - unfortunately the answer was yes.  Once again, if there is a side effect I will get it.

Thanks to all my prayer warriors out there!  Please keep praying.  I greatly appreciate it.  More later -

July, August and September 2011

During some part of July my Radiation Oncologist got me setup for hyperbaric treatments.  The chamber looks like an airplane.  They slowly bring up the oxygen level.  Then they put a big plastic hood on you.  It takes two hours.  You can have no electronics or phones.  They play movies.  I usually sleep the whole time.  I have extreme fatigue.  I could sleep 15 hours a day if I had the time - but that doesn't work with kids and doctor appointments.

I also start seeing the pain management doc prior to my bowel resectioning.  She put me on high does of morphine.  After the resectioning surgery I was able to come off the morphine.  Then boom - the radiation damage caused bladder cystitis at the end of June.  She put me on 30mg of extended release morphine twice a day and up to 15mg of Valium a day.  Valium is a great anti-spasmodic.  The pain was unbelievable.  I was having break through pain.  I saw my pain management doc last week she added 15mg of immediate release morphine up to 4 times a day for break through pain.  There is no cure for bladder radiation damage so the only treatment is meds.

I see so many specialists as well as my son seeing a psychologist and psychiatrist.   We have at least two appointments a week between the two of us if not more. More later -

July 2011

The weekend after we got back from the coast, was 4th of July weekend.  On Friday, I had gotten a call from the home health care nurse and my doctor's office.  The doc office said that if I got any weaker over the weekend to go to the emergency room and have them call my doc so that I could get a blood transfusion.

Due to getting off TPN, I had dropped down to 101 pounds and was so weak.  I was a hot mess.

I got weaker and weaker.  I went to the ER as my internal med doc had instructed - they  hooked me up to fluids.  And then we sat (for hours).  Nothing happened.  They decided not to give me a blood transfusion as I so badly needed.  So I walked out - I am not a patient person especially when I know they are not concerned with me or doing anything for me.  Monday was 4th of July.  My friends took my kids to a big pool party and I stayed home.  I found out later the ER doc never called my doc.

On Wednesday, I saw my radiation oncologist (who is the best doc - she gives you her cell phone and actually answers calls and texts).  After seeing her on Wednesday, I got two units of blood on Thursday.   She is a doc that doesn't mess around and gets things done.

Blood transfusions are wonderful things - thanks to all who can and do make blood donations.  I slowly got my strength back over the next couple of days.  But still could not retain any food.  Thank goodness for TPN bags - they provide all the nutrition and vitamins I need along with electrolytes.

I also saw my internal med doc and went right back on TPN.  Somewhere during this time I saw my gastro doc who said he could do no more for me.  My intestines are so damage that if I eat anything even from items from the low residue diet (which is completely opposite from eating healthy).  I asked my internal med doc if I would be on TPN forever, he would not commit one way or another. 

So glad I had a mediport put in as the PICC lines that they had been using in my arm would act up frequently and get blocked.  The port is much easier.  The home health care nurse comes once a week to get blood and change my port line which is how I hook up to TPN.  Much easier and cleaner.  Only bad part is that I can't get it wet.  This means I have to take baths and wash my hair in the kitchen sink - shouldn't complain but I really do miss taking showers. 

Throughout July I continued to gain strength by drinking Coke.  I had always been a die hard Diet Coke drinker so the switch was hard but I gained 13 pounds between being back on TPN and drinking Coke.  But I really have no social life which is usually centered around food and drink.  Both are off the list for me.  No matter what medicine they give me to stave off diarrhea - it doesn't work.  It sometimes is really depressing.

One thing to be grateful for is the love and help from my family and friends.  Couldn't do it without them.  Love them all.  More later -

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 -