Synopsis
- March 2009 See general practitioner and ob/gyn about symptoms
- April 30, 2009 Stage 1C Ovarian Cancer with a Grade 3 Tumor
- June 11, 2009 6 rounds of Carbotax Chemotherapy started
The Long Version
On April 30, 2009 my world changed forever. I was diagnosed with Stage 1C Ovarian Cancer with a Grade 3 Tumor.
In November 2008 I made a decision that I needed to stop pursuing IVF for a couple of months. My entire body, mind, and soul was exhausted from the process. My reproductive endocrinologist (RE) was supportive and understood where I was coming from – especially when I told him I had gained 60(!) pounds from the continuous cycling and 2nd trimester miscarriage. I spent January and February 2009 dealing with some family issues and decided to delay cycling. In late January I also had the flu. I think it was the flu. I live in Michigan and everyone gets the flu in Michigan from January through March 2009.
Once I was over the flu, I decided to start bellydancing again until I was going to do another IVF cycle in April 2009. That cycle was never going to happen. There wasn’t going to be anymore IVF cycles in my future.
I couldn’t quite shake the stomach flu – yes, I know it is gastroenteritis – so I went to my GP. He was asking me about where we were in our IVF cycles. Thank God. He told me that if I wasn’t better before the week was out to come back. I did. He sent me for a transvaginal ultrasound that found ascites (fluid in the abdomen) and a strange growth on my ovary. The radiologist kept indicating that it was OHSS Ovarian Hyperstimulation Syndrome). This seemed odd to both DH and me since I hadn’t taken any ovarian stimulation since November 2008. We then had to deal with insurance issues to have a cat scan – without contrast dye as I am allergic to the dyes – to get a better picture of what was going on.
I made a mistake with where I went to get the first cat scan. They couldn’t visualize the uterus so claimed that it had been surgically removed. What foreshadowing! I still had my uterus so was convinced that they had mixed up the records. (I have had such experiences in the past.) Part of the issue was the measurements had changed as well. This is when I saw Dr. Compassionate, my ob/gyn, late on a Friday afternoon.
Now, I had already read the report and knew that cancer was a real possibility. I had also used Dr. Google and it kept coming up with Ovarian Cancer with a very slight possibility of Meig’s Syndrome (a benign cyst that causes ascites). Dr. Compassionate sent me for another ultrasound. More ascites and the cyst had changed again.
When Dr. Compassionate talked with my DH and I, he knew our history. He had performed the D&C after my intrauterine death. Strangely, the woman (one of his partners) who had had to tell me about my intrauterine death had rescheduled my appointment to see Dr. Compassionate as she was not as experienced a surgeon. He couldn’t reassure us that everything was going to be ok. Only, hope for the best, but prepare for the worst. He then started to work to get me in as fast as possible with one of two of seven gynecological oncologists in the entirety of Southeast Michigan.
I received phone calls from Dr. Compassionate and Dr. Sunshine. (I later learned that Dr. Sunshine never ever sleeps.) By this time, I was barely getting around from bloating and fluid build up. We scheduled a parecentisis (removal of fluid from the abdomen through a needle). The fluid was green. Ascites fluid is never green. Everyone thought, “Good, probably not cancer.” The fluid came back negative for cancer. Within a week I had rebuilt the fluid. Dr. Compassionate and Dr. Sunshine scheduled surgery for April 30, 2009.
That day I wanted to run. We hoped for the best. After all, my family had a history of benign, large cysts. Did I mention the cyst was the size of a softball? I suspected the worst. DH was not prepared for this. He actually thought it would be best if he told me. I’m very glad that that was circumvented. I’m also very glad his mother – a surgical nurse who works at the hospital and knows all the doctors – was with him.
I woke up in incredible physical pain. Some idiot had though a low level IV painkiller would be sufficient when I had had a total abdominal hysterectomy and bilateral salpingo-oopherectomy (TAH/BSO) with omentectomy and full staging surgery. The endometriosis had left everything stuck to everything so the surgeons had to work to get everything. DH was ready to hurt someone because they were taking too long giving me an epidural.
Once I got the epidural, yes, I still had some pain, but it was tolerable. I remained on the epidural for several days before they pulled it out and gave me nothing. The pain management was less than perfect. I can admit that that may have been in no small part because of the limitations on what I can take.
For the most part, the nurses were great. Both my MIL and DH had to repeatedly remind them that emotionally I was not going to be able to handle a pregnant nurse or nurse’s assistant. The nurses and nurse’s assistants were very good at what they did, but they had to be constantly reminded of this. Why they never sent a psychologist I will never understand. I did see two ministers. Thankfully, they didn’t send any Catholic Priests. I probably would have cussed one out for blocking research in reproductive and stem cell technologies.
Once I was released from the hospital, I got to spend 2 weeks confined to the downstairs. Thank God my mother came to take care of me and my house. I love my DH, but he is not the domestic type. I would have starved to death due to my allergies. (Food allergies from heck!)
I healed fast, at least physically. On June 11, 2009, almost the anniversary of our loss, I started Carbotax chemotherapy. This is 5 to 6 hour protocol. Thank goodness for computer games! Most folks are only there for about 2 hours.
Of course, carbotax happens to have the highest rate of anaphylaxis of any chemotherapy drug out there. So, once again, I’m the allergy patient with another disease. This time it’s cancer. Of course, I do keep having to remind medical personnel that deadly disease is not new. Even the medical personnel (who aren’t allergists or radiologists) don’t really get that that is not a new thing.
I have to complete six rounds of chemotherapy. If everything goes perfectly, I will be done on my 41st birthday, September 24, 2009.