In recognition of Cervical Cancer Awareness Month, I sent out multiple requests to bloggers to find someone that would provide a personal story about this disease. Kelly responded and has provided the story below. I want to say thank you to Kelly for sharing her experiences.
When I first read what Kelly had written, I was brought to tears. We see patients in med/surg (the specialty that I work) only for brief amounts of time. As a traveler, we may never see these patients again. Full time staff nurses will sometimes follow these patients along their entire journey as they are in and out of the local hospitals. Having only a glimpse into the struggles of these patients (as a travel nurse), I appreciate hearing the entire story and feel that it has given me some insight into the ongoing struggles that can occur with diseases like Cervical Cancer.
Kelly’s story is also a great testament to the need for preventative care in relationship to Cervical Cancer. HPV vaccines which have recently come on the market as well as annual exams are a must for our female patients….let’s all remember to continue to encourage and educate our female patients to not take these issues lightly.
Here is Kelly’s story:
In early 2010, I had two major things going on. I had blown out my left knee due to Rheumatoid Arthritis (RA) and I had been bleeding vaginally constantly for about 4 to 5 months. The HPV had been found late 2009. I went in for my annual exam and showed her a bump – she biopsied it and it came back as high grade dysplasia. I had to make a decision – knee replacement or hysterectomy. I decided on the knee replacement first because I could not walk without severe pain. After discussing it with my gynecologist, she said it would be ok to wait on the hysterectomy.
A little background on HPV:
Almost everyone gets it. If their bodies are healthy, then the body is strong enough to slough it off in two to three years. If they are immunosuppressed, the body is compromised and usually is not able to slough off the HPV. There are four types of HPV that cause cervical cancer – mine was one of them. They did not type and screen it as it was clear that I had cancer. The RA meds make me immunosuppressed. So, my body was not able to fight it off. So on May 19th, 2010, I had a hysterectomy. She only took the uterus and cervix since I was so young (41). They left the ovaries so I would not have early menopause.
I barely remember the gynecologist coming in that night and saying something to the effect that things did not look good. I went home the next day – I am not a good patient and I hate staying in the hospital any more than I have to. The phone rang around 5 – it was the gynecologist. She called to tell me I had stage 2b cervical cancer. She was even crying. She said in the surgery room that she cut the uterus and cervix open and found the tumor in the cervix. I felt like the air had been knocked out of me. I immediately called my mom. She lives 5 minutes down the road. She came immediately. We were scared and just needed to be around each other for support.
Before I could see a genealogical oncologist, they wanted me to wait for my hysterectomy to heal. I was sitting on pins and needles waiting it out. I think my appointment was 4 weeks out. Close to the appointment, the doctor ordered a PT/CT scan. I wanted to see the results so bad. I called the records department and got a copy “to take to my doctor’s appointment.” I wanted to see if it showed anything about the cancer being in the lymph nodes. They were clear. I just sat there and cried with joy.
So, I was off to meet the oncologist around the second week of June. I was told that radiation was the workhorse for treating cervical cancer and that chemo boosted the effects of the radiation. I was then sent to see the radiation oncologist. The plan was for 6 weeks of radiation and 5 rounds of chemo. It finally got to the point in time to start the treatment. I first had a port put in to deliver the chemo. The first week was not so bad.
As the treatments progressed, I was to do weekly blood tests to make sure my body was strong enough to withstand the chemo treatments. The second week of chemo, I started going downhill fast. Radiation was kicking my butt. I had dropped 30 pounds. One of my weekly blood test came back not so good. The oncologist’s nurse called me and said go the ER immediately. Once there, they started doing blood tests and such and then all of a sudden they were coming in the room with face masks. They wore the face masks because my muscles, my brain, my immune system was wiped out along with other very serious issues. They gave me fluids and meds and I went home. I only went home because I begged and pleaded to get out of there. I am a very bad patient. We had to stop all radiation and chemo treatments for two weeks. During those two weeks, I had to wear a face mask anywhere I went. I was going to the hospital daily getting blood tests to see if my counts went too low and would need a blood transfusion. If the counts didn’t get low to the point of needing blood, they gave me shots to help boost my immune system.
I was finally nearing the end of treatments when I got a call from the radiation oncologist. She said they didn’t like how my right ovary looked and wanted to add eight more treatments. I just broke down and cried. I was so sick, could barely walk, used a wheel chair and could do little else but rest. All during this time, I had to go in for IV fluids. I was so low in my counts. I felt depleted and defeated. I had nothing else to give – my body was done in.
In September 2010, I was finally done with treatments. I bounced back pretty good – still fatigued but okay. The chemo did not make my hair fall out. It was the radiation – so my hair was pretty thin from malnutrition. I went back to work in October 2010. It wore me out but I did not want to show it. Things were strange at best at work as the company had been taken public. I got laid off in March 2011.
In January 2011, I started to have constant diarrhea and was not able to eat much or not at all. What I was able to eat I just lost it anyway. I had an appointment with my oncologist. He sent me to gastro doctor. In February, I had an endoscopy and a colonoscopy, only a little polyp was found and that was removed. Nothing was found to determine what was wrong with me. I just progressively went downhill.
After I was laid off in March 2011, I decided to take a month off and then look for work. At the end of March, I had my first intestinal blockage. If you have ever had one of these, you know how awful and painful it is. They put in a NG tube – they stick it up your nose and then down your throat to where the block is. It is nasty stuff they pull out of you. As uncomfortable as the NG tube is, it helps to relieve the pain of the blockage. I can best describe the pain as rolling sharp pain up and down my abdomen.
I was hospitalized twice more for blockages. The doctors did a laparoscopic surgery through my belly button and moved some things around and took out my appendix. The surgeon was trying to do as little damage as possible to try to fix it. After that, one of the tests I had to do was lay on an x-ray table for four hours and they would give you meds at intervals and see how it traveled down. I have a bad back – laying there about killed me. The fluids they gave me cause diarrhea – at the fourth hour, I had severe diarrhea – blockage solved. Finally my third block, the doctors decided it would be best to open me up and go inch by inch through my small intestines. They ended up cutting out 18 inches and re-sectioning my small intestines. It cured the pain but did not help my being able to eat without diarrhea. Also after the second blockage, they started me on TPN. It is delivered through my port – it provides a mix of protein, carbs, fats and vitamins.
In May 2011, I was diagnosed with bladder cystitis. This is another side effect of the radiation. It is like an UTI on steroids. My bladder hurts all the time. Rest and meds are the only things that help. I am on high doses of morphine and diazepam. Just sitting here now – I can feel it. I have been told by the urologist that it may stay as is or get worse over time.
After the re-sectioning, I started somewhat to get a little better. However, I did not get out of jail card very easily. I would have problems with my blood pressure going too low and I would pass out. Hurt myself pretty good on the tiled floors – much better to fall on carpet. I was on 12 hour TPN feedbags. I would get up at least every hour to tinkle. So my mom and I got a great idea to switch from night to day. We waited a couple of hours after my night time bag finished and then started my new routine. I blew up and gained 30 pounds overnight. They gave me diuretics and got rid of the excess fluid that my body did not know what to do with – it took about 3 days.
One morning I couldn’t breathe well, an ambulance took me to the ER. Theory was that the TPN fluid got caught up around my heart and lungs and made it difficult to breathe. I had to stay one night. Diuretics again and I was out of there. Other things happened- just can’t remember them all except the big one. All during this time, I got a total of three pints of blood. It is amazing how quickly a blood transfusion works. Thanks to everyone that can donate blood and do so.
It was a weekend. The kids were with their father. I wasn’t feeling great and checked in with mom and let her know. We made arrangements for her to call me around 8. My fever spiked to 105.5 – I know I should have just gone to the hospital then. I took naproxen and it brought down my fever to 101. I slept all day. I woke up somewhere between 7 and 8 – so thirsty. I made it to the kitchen and got my drink to the table. I then went down face first on the ceramic tile. I chipped two teeth, broke my right femur in 4 places and it all went down from there.
I remember the ambulance ride, I remember them cutting off my shirt and the last thing I remember is that I looked at the clock and it was 12:30 am and I could see my mom’s face in front of mine – she was telling me that she was going home since I couldn’t stay awake. This all happened on a Saturday night. I do not have any recollection until the following Wednesday. Shortly after I got out of the hospital, I went to see my internist. He told me I almost died from sepsis. My organs and brain were shutting down and I was lucky to have the ICU doc that I did. My internal med doctor said that the ICU doctor saved my life. I think this is why I lost Saturday night until the following Wednesday.
I hate going to the oncologist – it hurts.
When you have pelvic radiation, you are supposed to use dilators to keep the vaginal wall supple. If you don’t, your vaginal canal will shrink, in length and width, and skin will die. They have to put me under to do anything they need to do in the vaginal canal. I did not use them – very stupid decision. My canal is about an inch and a half long and barely any width. If you have had radiation to your pelvic region, please use the dilators or have intercourse at least 3 times a week. At this point, he said if I start using them I might get some width back but not any length. Almost every pap shows high grade dysplasia. This is one step away from cancer. At first, we tried a topical chemo. It burnt me very badly. I had to stop it quickly. So now, when I have pap comes back it always shows high grade dysplasia. Sometimes, I have to have an outpatient procedure so the doctor can cut out the bad parts.
“HPV is a nightmare that will not go away.”
I have checked the web for support groups and there are some in the San Antonio area, but I am not a support group person. I should go at least once to see what it has to offer. There is also a website that I like: www.cancercompass.com. From the research that I have done, only 10%-15% of patients that have radiation to their pelvic region get these side effects. Some have the side effects get better and others, like me, are chronic. So much has happened.
I never thought at 41 my life would turn upside down.
I can’t eat or have a glass of wine. This has taken all social events with friends and families away. My whole social world has changed. I used to get up every morning, get my triplets up and we all would get ready. I would go out with friends and my ex-boyfriend. I am now 43 – soon to be 44. My life consists of taking care of my children with a lot of help from mom. I am so lucky to have her. She helps me with anything – I am forever grateful. I would like to work again someday and have a somewhat normal life. I am also grateful for all my prayer warriors.