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Fellow Fighter Joni

Posted Apr 11 2009 12:34am
Joni was strong enough to share her story with me for submission to our GTB Fights Cancer blog. When I read her story it reminded me so much of my journey. I felt so alone during my battle. Reading that someone else shares some of my experiences makes me feel sad on one hand and comforted on the other. WE ARE NOT ALONE! So many woman fight this beast but do so in silence. We must start speaking out so that others don't wrongly believe that Cervical Cancer is uncommon, people like Darryl. Please take the time to read what Joni wrote and comment!



It was October of 2005, I was 27 years old. I wasn't aware that the little bit of spotting I was having was actually a warning sign of something much larger. At first I was not concerned. The month before I had taken a trip out of town. I didn't realize there was a mix up with my pills until after I was gone. Instead of my normal dose of birth control I received a pack of "low dose" pills. Since I used the pills to regulate my cycle I didn't think it would make much difference. I attributed the spotting to the change in dose.

When the spotting continued the next month, I figured it was just taking a while for my body to adjust to being back on the normal dose. It wasn't often and just a little pink. No big deal. Another month came. The spotting was getting heavier and more frequent, but still not enough that it caused alarm. It was the holidays and I had been under some stress. I figured it was now the stress causing this "issue". In the mean time I was also starting to have bladder problems.

By February I was spotting rather frequently. It was now blood and not just the little bit of pink from the months before. My bladder was so weak I was running to the bathroom at least 3 times an hour, sometimes 4. I had started wearing pads at all times. It was much easier than changing clothes from the unexpected bleeding and the "mild" loss of bladder control. I couldn't go anywhere, or do anything, without knowing a bathroom was right there. Needless to say this greatly impacted the new dating life I was creating. I finally decided to call my doctor and make an appointment. Not for the bleeding, but because my bladder was out of control!

I never made it to that appointment. Instead, I went home for lunch one day. I was no longer spotting, I was bleeding, and heavily. It was equal to my heaviest day.However, I wasn't due for my cycle for another 2 weeks. I did what any female would do...I called my best friend. She told me to call my gyne immediately. I did, my normal gyne wasn't available, so the office got me in with another doc in the practice. In my mind I was thinking it was a broken blood clot. I was a smoker of 14 years, I had been on birth control for 6 years. Yes, I was convinced it was a blood clot.

During the exam the gyne said "A-HA!" and explained there was a polyp on my cervix. The bleeding was due to this thing breaking. No big deal. He removed 80% of it to send off for biopsy. But his ending words are what hit me..."Is it cancer? Naaaw, I don't think so. You're young! Not saying it's 'impossible', but I don't think so." I sat there in the gown thinking Cancer? Why would he say such a word?? But blew it off...because he said I was too young, and he didn't think so. He's the professional here...right?

It was almost a month later by the time all the tests were done being run. I got the call around 10 am Tuesday April 4th, 2006. My gyne's office. They had the results, the doctor wanted me to come in (she hadn't seen me yet), could I be there at noon. I knew. If it was still at the pre-cancer level they would have told me over the phone like the fill-in gyne did when he said it was definately pre-cancer. But they wanted me in the office. I knew.

I started to prepare myself on the way there. I could manage chemotherapy. I could manage radiation. I can do this! I will beat this! When the doctor told me treatment would be surgery...well I wasn't prepared for that. When she said a hysterectomy...I REALLY wasn't prepared. It was stage 1B1 (possibly 1B2) adenocarcinoma of the cervix. 28 years old, single, no children, and I would be scheduling a hysterectomy within the month. The office made an appointment for me to meet with a Gynecological Oncologist on Thursday the 6th. Gyne/Oncos are the experts in "female" cancers, if cancer is ever even just suspected, be sure to get a referral to have a gyne/onco handle things!

I met with Dr. Eileen Segretti that Thursday. We went over all the test results. She did an exam and remeasured the tumor. Cervical cancer is most often staged based upon the size the doctor can see (if its bif enough to be seen). Under 4 cm is stage 1B1, over 4 cm is 1B2, evidently I was bordering the 4cm line. Dr. S said she felt it was under the 4cm range and kept the stage at 1B1. We scheduled surgery, a radical hysterectomy with pelvic lymph node removal and tacking up of my ovaries, for May 15th. I put it off a few weeks in order to move into my new place, and arrange my healing time to fall in line with my best friend's visit. I just had to handle those important things first!

After surgery Dr. S said everything looked good, but we would have to wait on the pathology reports. 2 weeks later I received another kick in the head. The tumor was larger and much deeper than expected. Instead of growing around the cervix like normal tumors do, mine decided to grow straight through the middle. I was fortunate I didn't put surgery off any longer than I had. With this new information I was told radiation treatments with a chemo booster would be required. I was to start those as soon as possible. A port (basically an IV with a flexible needle) would be inserted into my chest. I would keep this in to ease the pressure on my veins during the chemo infusions.

2 weeks later I was put under to have the port installed, and had my first chemotherapy infusion when I woke up. There would be 6 in all. I should have known from that first day how much the treatments would suck. I didn't expect there to be many women my age...but someone a little closer would have been nice. I spent 4-5 hours every Wed. with women that had grandchildren my age. On my third treatment a woman looked at me with shock and told me I was too young to be there. I so badly wanted to respond with "no shit".

The day after my first chemo I had my first pelvic radiation treatment. I was supposed to have that the day before, but the machine broke. 25 rounds of external radiation. They told me side effects don't normally start until the 12-15th treatment. Mine started on #5. With pelvic radiation your entire digestive tract is effected. I couldn't eat, everything made my insides scream and twist. For those 6 weeks I basically lived on cinnamon graham crackers and plain white rice. The only fluid I was able to drink was Gatorade, everything else upset my stomach and I would get dehydrated. The fatigue was incredible. I never knew I could feel so tired and worn down! Even when I was awake my body felt too heavy to move.

I learned to love my chemo days because I received steroids with my meds. That was the 1 day I had any sort of energy or appetite.

After 6 weeks and 25 external radiation therapies, I started the 3 internal high dose radiation treatments. While the HDR was easier on my digestive system, it caused another set of side effects. For a couple days after treatment everything felt "crispy", not to mention the burning sensation every time I went to the bathroom.

All treatments ended in August of 2006. In Sept the chest port was removed. In October I had a blood test done. I had started experiencing hot flashes and really bad mood swings. The results showed I was now in medical menopause. Whether is was due to the shock of the surgery, the chemo, or the radiation...nobody knows, and it doesn't really matter either. I started on hormone replacement therapy (Premarin).

Everything went well for a couple months. I put back on the 20+ pounds I lost during treatments. In the end of January/beginning of February of 2007 a new set of issue arose. I was told prior to radiation that the doctor was concerned about a "loop of intestine" that had moved and basically fell after surgery. The radiation doc was worried about this causing an adhesion later on. Dr. S said the treatments were necessary, and that adhesions normally take 2-3 years to develop. We would deal with it "IF and when" it happens.

6 months after treatments ended I started having problems eating. Every time I ate I would end up in pain for a couple hours afterward. Somedays it was so bad I would go home to my heating pad and percocet. I was put on a low residue diet. I wasn't allowed to eat fresh fruits or veggies, anything fried, little-to-no dairy, whole grains, and the list went on. It was easier to say I was on a high carb diet. I was losing anywhere from 1-4 pounds a week until I learned how to control my pain.

The end of May I went to the ER. I was in a LOT of pain and unable to hold food down. After a CT scan I was admitted into the hospital by our camp. Major obstruction now. I was put on IV fluids only...not even ice chips were allowed. 2 days later I was brought back to my home hospital. Because it was a holiday weekend, I wasn't able to see Dr. S until the 4th day of being hospitalized. On the 4th day I was told the contrast from the CT scan was just beginning to reach my colon. I was given the option of waiting this out or going to surgery. Dr. S told me I would definately need the surgery at some point in the future though. We scheduled surgery for the next day. Afterwards I was told I made the right choice, there was no way I would have left without it. And of course the couldn't use the same incision made for the hysterectomy...I now have a horozontal scar and a vertical scar...they look like an upside down cross. Like I'm marked by 'the beast'.

Less than a week after that surgery my bladder decided it had had enough. It no longer wanted to function properly. I had no control over it while I slept. After much embarassment I swallowed my pride and went to a urologist. My bladder was scarred and inflammed. I was told it was "pissed off" for lack of a better term. I was put on Detrol LA. Thankfully it has helped get things back under control, but there are still those occaisions.

Most recently I had a scare of recurance due to an enlarged lymph node. I was fortunate to have negative results on the PET scan, and was diagnosed with lymphedema. This is another life-long condition, but at least its one I can control with rest and compression socks.

I still can't eat right, but I've learned how to manage things, and they do improve every day. Just the other day I was able to eat a small portion of salad. It had been 2 years since I managed to do that without becoming sick!! It's the little accomplishments that make me realize just how far I've come. I have learned an awful lot in this journey. Some things I never wanted to know. Others have made me become a better person. But one of the best parts of the entire experience is the amazing people that have come into my life because of it. The doctors, the nurses, the support from message boards (www.hystersisters.com was a sanity saver!), and people in my life that I never would have bonded with otherwise.

Cancer has turned my life upside down and inside out...but it didn't take me down. I'm proud to call myself a cancer SURVIVOR.

Joni R
1B1 cervical adenocarcinoma




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