An Update Fo Shizz

So...it's been awhile since I shared a health update on this forum (though some of you are pretty caught up via The Facebook).  Thought I'd share what's been going on, medically-speaking.

I am a Vampire:

I finished 3 rounds of my latest cocktail (Cisplatin and Gemzar) on February 9th. I had my final blood counts done that morning and by that evening I was checking in at la casa de Suburban Hospital for some overnight blood-transfusing. Seems that this cocktail really did a number on my blood. And by "did a number", I mean...I had like no blood. This last round, my hemoglobin was at 7 gm/dl and my platelets were at an all time low of 3. To give you an idea of what this means...normal hemoglobin levels should be between 12-16 gm/dl and normal platelets should be 150-400. So 3 was pretty much...well almost 0. Eeks. 

It was a long night, but by Saturday morning I was all full of The Blood-Infused Energy. It was awesome. In fact, the other day, when I was feeling a bit rundown (even though I know my blood counts are great now), my first thought was..."I wish I could get some blood". I am officially a vampire.

The Scan and the Results:

After an energetic weekend, I had my follow-up CT scan on Tuesday morning. The scan was uneventful and I braced myself for the results, which were scheduled to be revealed on Wednesday at 3pm. It was a long 30 hours or so of trying to quiet my mind.

The results came back...eh...notsogood. The liver masses (there are 3 total) are a teensy bit bigger. Nothing notable in my pelvis (though my pain is back, so I am cornfused about this result). Time to put the kibosh on the Cisplatin and Gemzar and try something completely different. Sigh. I, again, have mixed emotions. Disappointed, yet ever hopeful. 

Adios to Cisplatin and Gemzar:

I am actually kind of glad to be moving on from this cocktail...as it knocked me on my tail for reals. The Cisplatin made me nauseous, non-hungry and left an awful metallic taste in my mouth. The Gemzar is what destroyed my healthy blood cells. I am glad to say adios to them. I am 3 weeks post chemo and I feel so much better, physically...minus that nagging pain in my back and pelvis...little bastard.

The New Plan:

Monday, I start topotecan (brand name: Hycamtin). I get this infused everyday for 5 days straight and then get 2 weeks to recover from it. I have no idea what to expect, but I feel hopeful and optimistic that a) it won't destroy my blood in such an aggressive way as the last stuff and b) the 3rd time's the charm. Topotecan is gonna work.

My Eyes:

I tried tapering down to 5mg of prednisone, which I take to keep my optic nerves from blowing up. It didn't work. 5 mg was too low, I guess, and my right eye clouded over and started hurting. I am now back up to 20 mg for a bit and instead of my optic nerves blowing up, now my cheeks are about to explode. Hmph. 

My Hair:

My hair is growing back!! I have dark brown/maybe blonde, maybe gray hairs coming in all over my scalp. I am thrilled. I feel beyond excited and seeing fuzzies on my head gives me hope that there is life after treatment. Normal life. Without hats or scarves or wigs. Of course, I have no idea what the topotecan will do to my hair follicles. But, for today, I celebrate my fuzzy wuzzy hair!!

Alright...I wanted to write more more more...but I am going to a support group tonight (which will undoubtedly give me some blog material) and I don't want to be late!

Ciao y'all!

Fantasy vs Reality

Yesterday, I was driving on I-70, home from a visit to Hopkins to have my eyeballs checked. There is a sign on I-70 that states the mileage distance to a few places, such as Denver, CO and its ultimate end, 2,200 miles away in Cove Fort, UT. Seeing the sign reminded me of how I had always romanticized about driving cross country. National Lampoon's Vacation-style. Stopping at all the cheesy tourist attractions. Meeting interesting people and having enlightening adventures along the way. I even seriously considered doing this many years ago when my friend, Rachel, lived in Salt Lake City. An odyssey. A cathartic experience. A character-builder. Then, yesterday...while romanticizing...I remembered how much I hate being in the car.

I have experienced the same realization about hiking. I went through a phase, post-college, where I wanted to hike the entire Appalachian Trail. I saw a documentary following several people who did just that and even followed an early version of a blog from a woman who hiked the trail and while hiking, she would write letters and send them to a friend, who then posted them online. I was fascinated. Mesmerized. This hiking adventure would change my life. Make me more interesting. Challenge me. Then I went hiking and realized that after about an hour...there was no way I could spend 6 months of my life hiking all day, everyday. I would be miserable. 

When I was a little girl, I think I fantasized from time to time about being a patient in a hospital. I can tell you today, from experience now...there is nothing fantastic about being a patient. (Well, OK...having a call button...and people waiting on you has some perks...but it does get old after an hour or 2). I also fantasized about being a teacher...and I still remember, with stark clarity, the moment that fantasy became reality as I wrote my name across the blackboard at Cluster Springs Elementary School. And, you know what, I hated it. I was not made for teaching. 

What does all this say about me? Am I delusional? Foolishly optimistic? Pathetically un-self-aware? I don't know. I don't even know where I am going with this. Ha ha. All I know is that fantasy and reality are often two very different things. Wig shopping...not so fantastic. Shaving your head...nah...not that great. Being unemployed and financially supported by another...well...OK...it definitely can be nice. But, if my option was to be employed and not have cancer, I'd choose employment every time. And I hate working. That is how much I hate cancer more. Ha ha. 

Anyway...I just felt like writing. And so I did. Reading back over it, I sound pretty down. Maybe I am. But, it is temporary. It always is. In fact, I think that usually when I feel the pity train pulling in the station...it is a sign that the pity train will be moving on very soon and I will be back to fighting with a smile. Stay tuned for a health update...I know it's a bit overdue. 

Love you! Vashni

My Medical Story

It occurred to me...from questions asked...that many don't really know the actual history and back story of my current medical conundrum. You may not actually be interested, but you know what...I am gonna share anyway. Touche'.

2008

Around about March of 2008, after YEARS of abnormal pap smears, colposcopies*, LEEPS*, biopsies and dysplasia* diagnoses, I was officially diagnosed with Stage Ib cervical cancer. The diagnosis came after a LEEP procedure, which included a cone biopsy* (see my definitions of all this crap below) of my cervix. What my OB/GYN at the time found was a 1.3 mm (yes...teeny) lesion on my cervix that tested positive for squamous cell carcinoma. The lesion removed did not have clear margins...meaning there was no clear distinction between the cancerous cells and the healthy cells, so a repeat conization* was recommended to get it all out. In addition, the normal procedure for this stage of cervical cancer was to do a radical hysterectomy and take out my baby-holder. As a mostly single (I had JUST started dating my husband) 34-year old female, I wasn't sure about losing my uterus yet, so I was referred to a fertility-sparing gynecological oncologist at UNC Hospitals.

This doctor met with a team of peeps at the hospital and further recommended the repeat conization and a pelvic lymphandectomy to verify if the cancer had spread to my lymph nodes.

So, on May 24th, 2008, I underwent this surgery. Laid out nekked and unconscious in front of a dozen or so medical students. At the time, I was more terrified of being unconscious than I was of having cancer. I have never been a huge fan of the whole anesthesia thing and I am, to this day, still traumatized by the falling asleep and the waking up parts of that surgery. They took about 14 lymph nodes and all 14 of them came back negative for cancer. The cancer on my cervix was completely removed. All that was left to do, was heal and recover from the surgery and I was good to go, baby holder and all. 

(Side note: the first time my parents and my husband met was at my bedside in the hospital with me all drugged up. AWKWARD.)

One of my absolute proudest lifetime achievements followed 3 months to the day after this surgery. Despite the fact that I wasn't able to exercise for the first 6 weeks after the surgery AND I suffered nerve damage in one of my legs during the surgery (it's all better now), I had committed to participating in the 2008 Accenture Chicago Triathlon shortly before my diagnosis. I could have deferred til the next year, but my plane ticket was bought, hotel reservations made, registration fees deducted from my bank account, and my buddy in CA had also committed and paid his cash...so I decided to just go for it.

The Chicago Triathlon consisted of a 1.5k swim in Lake Michigan (I added a few tenths of a k to this by swimming in zigzags with my messed up leg (doh)), a 40k (25.6 mile) bike ride around the city and a 10k (6.2 mile) run to the finish. It sucked for me. Sucked. But, you know what. I did it. Out of 8000-plus participants, I finished at about 8000. Close to last. Seriously. I am not just saying that to be dramatic. I was almost last. But, I finished. My body proved to carry me long after I thought it could. And I learned the power of mind over matter for sure that day. I thank the friends that supported me and until about a month ago...I still had all the voice mails from friends and family who called to wish me well and tell me how proud they were of me that day saved in my phone.

2009

2009 was a boring drama-free year for me health-wise. I continued to do triathlons and date my now hubby. We got engaged in September of 2009 and I also got to participate in the Nations Triathlon in Washington DC (same distances) in "pretty good" shape with a decent and respectable time for me. I was very happy.

In preparation for moving in with my fiance in 2010, I started purging my "stuff"...including my medical records. After a full year-plus of clear pap smears, I figured that chapter was closed. Into the trash it went. Doh.

2010

I continued to see my gynecological oncologist for pap smears every 6 months and continued to receive a clean bill of health in this arena. 

In April of 2010, while working many hours in a new position at work, adjusting to life with my fiance, planning my wedding and training for a sprint triathlon, I started having eye pain and headaches. I thought it was a sinus infection or stress, but when I woke up blind in one eye one morning, I knew I was dealing with something different. You can imagine how freaked out I was, but thankfully I have awesome friends who were with me through it all. I was admitted to Duke Hospital for 4 days on IV steroids and released into the world vision intact with a prescription for high-dose prednisone. 

During my stay, I was tested for EVERYTHING under the sun...from MS to NMO to Lyme disease to Bartinello...fungal infections, bacterial infections, viral infections, cancer....everything came back negative.

Thus began my battle with prednisone and all the crap it has done to my body. I won't go into the details about the emotional ups and downs and the getting fatter and fatter and the sweating. You can read about that here: This is Not a Pretty Post.

On August 21, 2010, I got married. Easily the BEST day of my life. Surrounded by everyone (save a few missing folks) who is important to myself and my husband in a beautiful location, with great food and music. Happiness abound. At the time, I was not thrilled with my growing body and chipmunk cheeks, but these things fell by the wayside as I celebrated the very best of life.

2011

As you all know, in 2011, my husband accepted a job in the Washington DC area. This was a big change for all of us (still is), but there are many great things about it. My husband moved in April of 2011 and I followed in June. In July, we moved into our current house. Around that time, I was having lower back pain and abdominal pain. I remember consulting girlfriends about the symptoms of UTIs. I was sure that is what I had. I saw a doctor. He prescribed meds to treat my UTI. They didn't work. The pain got worse. I had a CT scan. There were things there. A pelvic mass, inflamed lymph nodes, and a spot (or 2 or 3) on my liver. I had biopsies. I had a PET scan. I had another clean pap smear. I was sure all of this was related to my eye issue. Some mystery autoimmune disease plaguing the rest of my body. I never in a million quadrillion years expected to hear the words "It's cancer". I was blindsided. Shocked. 

So, here we are today. I still have a pretty pink and healthy cervix. But, inside I have little splotches of squamous cell carcinoma all over. The pain is gone and if it weren't for the chemotherapy, I don't think I would have any clear symptoms of illness (meaning...the chemo makes me feel like crap...but I don't have symptoms of liver malfunction or pain in my abdomen or back anymore). Cancer is a sneaky sonofabitch. Because the cancer has recurred and spread to an organ not adjacent to my cervix, it is considered Stage IVb cervical cancer. It's scary. Statistics are brutal, but MOST of the time I am sure that I will beat any negative statistics. I just don't think it's my time yet. 

There is a possibility that my eye issues are related to the cancer. There is something called paraneoplastic syndrome where certain cancers release certain proteins in the body that affect other systems, such as the neurological system. While I did not test positive for any KNOWN paraneoplastic responses, I may be affected my an unknown response and treatment of my cancer may in fact improve my eye issues! Yay!

ANYWAY...I have a scan coming up next week. I am anxious to the Nth degree. But, I suppose I should remind myself that worrying will not change a thing. It's either getting better or it's not. I would settle for stable. And there are still plenty of treatment options left. I just hope to not ravage my body too much in the process of trying to heal it! 

What I think you all should know about cervical cancer: 

1: It's sneaky, but early screening is still the best.

2: Not all HPV strains cause cervical cancer and not all cervical dysplasia becomes cancer. I think it is actually very common to have these, so don't freak out and jump to conclusions if you get an abnormal pap...I know it is hard, but chances are you won't end up like me. Still...get your annual exams!!

3: There doesn't seem to be a lot of awareness or research in treating advanced stages of cervical cancer...so join the cause and push for this. I think Annie is on top of this, so email her if you want info.

*My little medical glossary:

colposcopy: a medical diagnostic procedure to examine an illuminated, magnified view of the cervix and the tissues of the vagina and vulva.

LEEP: Loop Electrosurgical Excision Procedure (LEEP) uses a thin, low-voltage electrified wire loop to cut out abnormal tissue.

cone biopsy or conization:  an extensive form of a cervical biopsy is called a cone biopsy because a cone-shaped wedge of tissue is removed from the cervix and examined under a microscope. A cone biopsy removes abnormal tissue that is high in the cervical canal. A small amount of normal tissue around the cone-shaped wedge of abnormal tissue is also removed so that a margin free of abnormal cells is left in the cervix.

dysplasia:  the earliest form of pre-cancerous lesion.