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 -

Now and Then

Now
I am so sick and tired of being sick and tired.  I have never recovered my original strength and energy that I had prior to treatments for cervical cancer that went from July to September 2010.  The radiation and chemo put me through the wringer. 

Then

In January, my issues with eating increased.  I was barely able to eat much.  I had so many issues with keeping food in me and my weight began to decrease.  I had already lost so much weight during the treatments.  I never thought I would be in a position that I needed to gain weight.  I saw my gyno oncologist during this time.  He referred me to a gastro intestinal doc.  I called to schedule an appointment - which I couldn't get in until February.

In February, I saw the gastro doc.  He suggested that I have an endoscopy and colonoscopy  All that came of that is that I had a polyp removed. He also suggested that I start drinking three Ensures a day.  I tried to get in three a day.  I felt like I was drowning and no one took it seriously.  I continued to have difficulties eating and with diarrhea.  Also about this time, the pain started.  When I ate, I would have rolling waves of pain up and down my abdomen.  It didn't seem to get better and continued.  I almost gave up most eating as it was less painful to eat.

In March, it continued on.  Towards the end of the month, one of my sons got a stomach virus.  I thought I had it also.  He felt better the next day.  But I continued to deteriorate.  By the end of the weekend, I could not take the increased pain.  My mom took me to the ER.  They gave me anti nausea and pain meds which helped immensely.  They did a CT scan of my abdomen and found a blockage in my small intestine.

They put an NG tube in.  If you never have experienced an NG tube - pray that you never do.  They moved me from the ER and admitted me to the hospital.  I got to my room around 8 pm.  Around midnight, two nurses came in and said they were going to put one in.  I had no idea what was going to happen.  They tell you to be still as possible and chew on ice and swallow it as they take a tube and shove it up your nostril and snake it down the back of your throat all the way to your stomach.  It sucks up the yuck that is not able to digest and gets stuck due to the blockage.

My gyno oncologist came in the next day with a general surgeon.  She said there my be surgery involved but they would wait and see.  The next day, a nurse came in and told me I was scheduled for surgery at noon.  The surgeon did laproscopic surgery.  She moved around my small intestine thinking the blockage had been dislodged and took out my appendix that she said looked inflamed.   I spent four nights in the hospital.  I was feeling better as they had sucked up all the yuck from my stomach and intestines.  So I went home and things got worse.

More later - Kelly

October - December 2010

I went back to work on 10/4/10.  Work was shaky - a lot of changes were going on.  I was weak but I tried to hide it.  I couldn't eat a whole lot without spending half the day in the bathroom.

At the same time, one of my sons started really acting out at school.  He was spending time with the school counselor and I started taking him to a psychologist.  He was displaying a lot of anger management issues.  It was very stressful, but I tried once again to hide it and handle it.

It really never got better and as October slide into November issue weren't getting any better and things began to crumble.  My son spent a lot of time in in-school suspension.  The crazy part of it was that he is a really great kid.  But no matter the counseling and restriction at home nothing seemed to reach him.

His father and I ended up in a meeting with the school principal and his teachers.  The discussion centered around his behavior, the counseling he was receiving and how we could make it better.  Didn't help.  As he continued to deteriorate at school and it affected my health suffered.

I have rheumatoid arthritis - which flared up and made me feel even crappier.  During my treatments, the docs took me off my high powered arthritis meds.  I was living off high doses of steroids.  Also my lower back went haywire from disc degenerative disease.  I needed surgery but the timing was bad.  The back doc told me I would have to gain some weight before I could withstand surgery.  I ended up getting four rounds of steroid shots in my back.  The fourth one finally did the trick.

For the Rheumatoid arthritis meds make me immuno suppressed.  This played into my cervical cancer.  Most cervical cancer is caused by the HPV virus.  Most people sluff it off after a couple of years.  But as I was immuno suppressed my body couldn't get rid of it.  Thus it lead to the cancer.  A scary part of it is that my body will never be able to get rid of it - which can cause more cancer.

I went for a repeat PET/CT scan in December.  At that time it showed no residual cancer in my body.  But my 3 month follow up with the gynocological oncologist in which he did a Pap test, still showed abnormal cells from the HPV.  I was showing high grade dysplasia which is two steps before cancer.  Better believe I will get all three of my children the HPV immunization shot.  More later -

Family and Friends and Blood work

A big part of my journey included my Mom, my children and friends. 

My Mom

She and I have always been close.  After the gynecologist called to break the news, the first person I called was my Mom.  She lives a mile down the road and came to my house immediately.  We mourned the diagnoses together and were so curious as to what would come next.  Since the docs wanted me to wait to heal from the hysterectomy, my appointment with the oncologist was scheduled for a month after the diagnoses.

Whenever I need my Mom, she goes into Mother Bear mode and nothing can stop her!  She has done so much for me before the diagnoses, during the treatments and all the aftermath.  Sometimes my friends did not understand.  They wanted to help so badly - which I appreciated greatly.  But in all truth all I wanted was my Mom.

She was always the first one there when I needed help.  I always remember her hugging me as I was growing up and telling me how much she loved me.  I don't think there is one thing that could come between us.  I love her more than words can express.  Thanks Mom for being the best Mom I could ever have!

My Children

My sister had died in 2006 after a long battle with breast cancer.  My children were four at the time and had a bit of awareness of it as she had lived with us but did not have a total understanding.  My concern was that they knew she died of cancer and was gone.  Although they were 8 at the time of my diagnoses, I did not want them to know I had cancer and would fall off the face of the earth.  Probably not the best decision looking back.

They knew I had surgery on my tummy.  So when I became sick during treatments, I told them I was just having issues with my tummy.  At the time, I had a babysitter so they had a fun summer even though I couldn't do much with them. 

My Friends

My friends kept up with me through Facebook, text, emails and phone calls.  I would post updates on Facebook and they were always at the ready with prayers and offers of help.  I had my Mom and it was difficult to accept help from other sources.  It was a rough time and I really did not want to see anyone - I was way sick and just thought it was best.

Blood work

I know I mentioned earlier that I went for weekly blood work to see if I could withstand treatment.  The chemo nurse called me at home and told me my blood work results were horrible and to go directly to the ER.  I was so sick and tired I asked her if she was serious - she said she was and to GO!

The kids were with their father that night so they were taken care of.  My mom came and got me and took me to the ER.  They immediately got me in and did blood tests.  The next thing I knew, the nurses and doctors were all walking back in wearing masks.  My immune system was completely wiped out and my electrolytes were way below normal.  I learned that being that low in electrolytes could cause heart and brain damage.  Not fun to hear.  They immediately hooked up my IV and started giving me magnesium, potassium and saline.  I was admitted to the hospital for the night.  There are always so many roadblocks I faced but I keep going as best as I could.  More later -

What came next!

One huge thing I left off of the beginning is that my wonderful group of friends and coworkers through me a party - we called it "A Celebration of Life."  I was overwhelmed by the love there and the prayer warriors that started to pray for me.

I so believe in the power of prayer.  I had seen it when my triplets were born at 28 weeks and are now perfectly healthy.  I had such a support group of great people - I feel so blessed.

So now to the treatments.  The first week went okay.  I thought I can do this!  About the third week was when the trouble began.  I would go for weekly blood work to make sure all the counts were good so I could withstand treatment.

I had a couple of incidents of passing out.  But one night it was horrible.  Every time I would get out of bed to use the restroom, I would crumble to the ground.  I hurt myself by hitting my head on my dresser, on the kitchen tile when I was trying to get something to drink and hitting my head on the bathroom tile.   I called my mom and she came and got me after the babysitter came to the house.

My mom took me to my Radiation Oncologist's office.  They could not get my blood pressure by using the automatic cuff.  Once the nurse got it manually, it was 60/40 - hence I was severely dehydrated.  So they gave me tons of IV fluids.  Also my blood work that week was horrible - I was border line in need of blood transfusions.  All treatments stopped for two weeks.

A quick word about my Radiation Oncologist - she is the most awesome doc.  She gave me her cell number and told me to call her if I ever got in trouble and wasn't feeling good.  One weekend, she even took calls when she was on vacation.  She has always advocated for me and made sure I was getting the treatment I needed or sent me to docs to address any symtoms that she couldn't.  Love her!

For those two weeks, I went to the hospital daily for blood work and Neupogen shots to bring my blood counts up.  I escaped blood transfusions and my counts came up.  I was strong enough to resume radiation treatments but the docs decided I was not strong enough to resume chemo.

I restarted the radiation treatments and it was rough.  I could not retain food - everything went right through me.  Anytime I had a doc appointment my mom would take me.  She would go in first and get me a wheelchair.  I had nothing left and had no strength.  By this time I had lost 27 pounds and was weak.

As I was nearing the end of my 30 radiation treatments, my radiation oncologist told me I was going to get 8 additional treatments focused on my right ovary as they were worried about how it looked.  Once again I was facing something that I did not think I could do and was very disappointed.  I just wanted to get it done with and sleep.  I was drained.

I got the 8 additional external treatments and also had the planned two internal radiation treatments.  All treatments ended in mid-September 2010.  The docs wanted me to take a couple of weeks off to recoup before I went back to work.  So Oct. 4, 2010, I went back to work.  In time all hell broke loose.  More later -

The Beginning

Hi!  My name is Kelly and I was diagnosed with cervical cancer stage 2 in May 2010.  I had no idea what I was in for!  You hear the word cancer and you have two choices:  curl up in a ball or you fight.  I am not a doctor but want to share my story from the patient point of view to help others.

I was 41 years old at the time of the diagnoses.  I am a single mother of triplets.  And I was scared.  My symptoms were constant bleeding.  During the same time, I needed a left knee replacement.  I decided to do the knee replacement first so that I could get walking without pain.  Then on May 19th, 2010, I went in for a hysterectomy.  I went home the next day.  Around 5 pm, my gynecologist called and broke the news.  I broke.  I broke for my children, my Mom and myself.

I was sent for a combined PET/CT scan.  Luckily, the cancer had not metathesized.  I had to wait for the hysterectomy to heal before I could begin any treatments.  I had to find a gynecological oncologists and a radiation oncologist.

I met with the doctors and they told my the plan.  Radiation treatments are the workhorse in cervical cancer.  Chemotherapy is used to boost the effects of the radiation.  Treatments began 6 weeks after my hysterectomy.  The day before chemo began I had a mediport put in my chest for the doctors to give me the chemo.  I also began 5 days a week radiation - planned for 6 weeks.

Cisplatin was the chemo and it doesn't make you lose your hair - so  I was happy about that.  But three weeks into it, my gynecological oncologist did not like how my mediport was healing so he took it out in his office!  Radiation and chemo took me down pretty quickly.  I couldn't retain any food no matter the medications they gave me.  More later -