Once it was determined I had Ovarian Cancer no time was wasted. I had been referred to a gynecologist in Nashville and had made a list of questions prepared. He was not at Vanderbilt though and I have to admit I initially thought “This is my LIFE, I need the best, I’ll go to this appointment and probably get another opinion at Vanderbilt”. I had become well read on treatments, outcomes, and statistics. Sadly Ovarian Cancer is one of the worst in terms of survival rates. I needed the latest in technology and treatments.
At my first appointment I met my with my doctor and he had the most compassionate bedside manner. He talked to me about several things and always emphasized on my needs or wants and made that the focus for the treatment plan. He started off telling me about the standard protocol for OVCA for the last 30 years and before I could even jump in and ask he said everything to me that I planned on asking ….he said…but YOU are much younger and healthier than most with this disease (only because it’s usually caught later in life) and he thought we could try a much more aggressive approach which combined standard chemo (chemo intravenously through a chest port every 3 weeks and adding an abdominal port to receive direct (large volume) chemo drugs in the abdominal cavity. This would allow the abdominal area to basically bathe in the meds for a period of time. There are many different names for the meds but it Carbo/Taxol (standard) Given through a small tube to the abdominal port and Taxol IV chest port. He then explained how treating cancer is “Like walking on a tightrope, you are constantly trying to balance the most effective amount of cancer killing drugs without actually killing the patient in the process”
My doctor had the exact plan I wanted and was eager as me to get started. We scheduled a surgery for exact staging and diagnosis plus adding the 2 ports. He sent in his Nurse Practitioner to go over what to expect, chemo protocol, …so much information! This team was really on top of it, by the time I left I had a surgery scheduled and planned chemo and all appointments set. I really liked her too! She said you are in the best hands, this doctor taught at Vanderbilt many years and is highly respected for this specialty, he’s on their board and they even named Vanderbilt’s baseball field after him. (Guess I won’t be looking for that second option after all! Lol )
My staging results were Stage 1C grade 3 Ovarian Cancer with a 70% chance of 5 year survival. BRCA Negative. Which is very good odds in my case, caught early.
I caught a MRSA infection during the staging and port surgery. I remember many people coming in to have me sign off on tissue donation for studies right before ( which is great) but in hindsight maybe do that another day? There are many ways I could have caught it but it would seriously affect my treatment in the long run. Here is an excerpt of my journal right before my first chemo:
“OK I have 3 days to mentally prepare for my 1st chemo. I already feel whooped….2 surgeries in a month and then a mrsa infection from the hospital. My abdominal port is still bothering me, bra or no bra it is just in a bad spot and my abdomen is still oozing a little from my infection site. I have developed a lovely anxiety problem…it seems anytime I get ready for something wether a ct scan or blood transfusion my heart starts racing and I can’t calm down. I am given ativan for it now and they are already preparing for me to freak out on chemo day, so they will give me that in iv. In the meantime I have bought some meditation cd’s that I hope will help with this. After spending 11 days in the hospital I am dreading going back, scared I may not leave! I check in Tues morning and get my iv chemo and stay the night and day 2 i get ip chemo and hopefully go home. Please say prayers for me, I need them!!!”
Another journal excerpt:
May 10, 2011 at 9:53 am:
“A couple weeks ago I had a routine IP/iv chemo that was anything but routine. The iv went fine for the 18 hour drip then when IP started it instantly hurt. Unfortunately it happened late at night in the hospital so as my doctor got messages of my pain getting worse, they kept offereing me higher levels of pain meds. and slowed my ip drip way down. I hurt so bad I started screaming and my husband reached over and turned the drip off himself, big no no, but I immediately felt better and started to fall asleep. They finally brought up dilaudid, which was the only med that worked with my level of pain. At the end when they flushed my port it also hurt very bad….turned out I had an infected port. I had it removed and I am still healing from it. I hope to God this infection is gone, because I really don’t know if I can go back to the hospital, I actually feel nausiated just thinking of it!
My doctor is now putting me on Dose Dense….I start next week as long as I am strong and hopefully done with the infection. I am getting lots of info on dose dense from alot of you, just wondering does anyone else get 3 shots a week of neupogen??? I think it sounds extreme? I am hoping my body can handle this new chemo for me, because I really need it to work since IP did not.”
As it turns out I had probably more complications and infections than I can count. My doctor and NP were always at my side getting me through each crisis. They said I developed PTSD and began giving me Ativan to prevent my panic attacks. The mind and fear can be your worst enemy! That’s for another chapter.