Wow, I guess I lost interest in this for awhile. Sorry guys, I know people are looking for updates. Well now you're gonna get a long one because it was a pretty important day.
Well Monday I had round 4. I also had an appointment with the my gyn. onc - the first time since I began chemo. I was looking forward to this appointment for awhile because I had gather up a bunch of questions to ask over the last few weeks. Most importantly, I wanted to see what her plan was for my next step of treatment.
Monday morning I got a ride to my appointment thanks to a helpful roomie and was ready to discuss my future. It started off with a quick bimanual exam, which the doc said was perfectly normal. Relief #1- although I haven't had any signs or symptoms that would indicated there was a new mass. I also had her check a few other things out: since I was diagnosed, I had noticed some other abnormalities on my body- just small weird things for which I could use some peace of mind that they were normal findings. Sometimes before I fall asleep I lie in bed and do a self-check of lymph nodes and bumps. I can't really say that I'm being paranoid, because it was doing this that helped me go to the doctor in the first place. (This is also a great time to do your breast self-exam- as I always recommend to my patients). Anyways, I had noticed a small lump or nodule on the right side of my thyroid. It moved when I swallowed and was somewhat soft- which I know is a good sign. Also, I had noticed recently that my tonsillar lymph nodes were bigger than normal. Furthermore, I had two small bumps on my scalp which were pretty noticeable now that I have no hair. When I ran my finger over them they kind of moved with the skin. I don't know how else to describe them. Finally, the last thing I noticed was a small fatty lump on my back near my hip bone- right below my tattoo. Alone these things wouldn't normally concern me too much, but oddly all of these abnormal bumps are on my right side- the same side as my original tumor. It is frustrating because I don't have enough clinical experience with abnormal finding to know if these are benign irregularities or serious signs. After all, I have felt nothing but normal thyroids, and most people have swollen neck nodes most of the time. Anyways, I asked the doctor about all of these things and she had a hard time even feeling them. She said that they were normal lymph nodes, including the thyroid node. The thing on my back was a lipoma or benign fatty tumor. This was somewhat of a relief, although part of me is still concerned. After all, I had brought hard pelvic nodes to her attention when I first saw her and she has said those were benign- and I ended up actually having cancer (although I don't know if those nodes were even involved). So I asked her when I could get the once thing that WOULD give me peace of mind- a full body CT scan.
The doc said that she originally did a CT of my pelvis, abdomen, and chest- which apparently included the area up to my thyroid. This is because ovarian cancer usually spreads to the pelvis, then abdomen (usually bowel omentum or lining), and then chest/lungs. After that, it would show up along the lymph chain- first in the nodes next to my sternum and between my breasts, and then the ones above my collarbone. She checked these during my exam and they were fine (plus I check all the time) She looked at the CT report again while I was in the exam room, and noted that the radiologist had not seen anything suspicious in the thyroid. She did remind me of something that which I had completely forgotten since the first time we talked- the last CT did show that I had something near my esophagus- a 2cm mass. The radiologist had noted that it looked benign so I figured that there is no point being concerned at this point. If it shows up again then I can undergo a scope to go down my esophagus and investigate the tissue further. In any case, she said that I am scheduled for a CT after Round 6- and this time it's a full body one. She didn't want to do it earlier because apparently the contrast is hard on your kidneys and she doesn't want to increase the demand on my body more than i already am.
She then asked me how chemo was going and I told her that I was having minimal nausea, bad fatigue, and neuropathy in my fingertips. The neuropathy immediately concerned her. She said that most people don't have this symptom until after the 5 th or 6 th round. Unlike what I had been told previously, some people do not completely regain sensation in their fingers. With my young age, she decided that it was best to switch my Taxol (the one causing the neuropathy ) to another similar drug which I believe is Taxotere. This drug does not cause neuropathy, and as a bonus only takes 1 hr to infuse as compared to 3. So I got out that day around 2pm rather than 6. However, I was informed of a rather disturbing side effect: some patients have extreme water weight gain- often to the point that they are so swollen that they don't even recognize themselves in the mirror! Luckily my nurse said that the Dextamethasone (steroid) that I have to take can counteract this effect. And guess what- 6 days later and no weight gain!!!!
Side note: I actually just looked up this drug and now found another worrisome side effect that I'm pissed I wasn't told about: apparently patients on this drug can lose their finger and toe nails. WTF?!?! In young people the incidence is about 25% so maybe I will be lucky. It sounds so painful! People suggest bringing in ice bags during infusion to put on your fingers to prevent it- I definitely will have to remember this. I can't believe they didn't tell me!!!!...
After making the change we talked about how the chemo was working. I didn't have the last results from my CA-125, but she has my lowest as being 8. So far so good. My counts were still low all-around (hemoglobin, white and red cells, platelets) but not too low to delay treatment or require extensive safety measures. Then we talked about the next step. Her next step was to do a hysterectomy using the fancy DaVincilaparoscopy machine- meaning that it would be an outpatient surgery with only a few small incisions. I immediately told her no: I intended to keep my uterus as long as possible. This wasn't advised, and she commented that the surgery would be beneficial in that it would offer a second look into my pelvis to possibly detect any changes not picked up by the scan. While this would be normally be a great strategy, I said that I simply wanted my uterus and so she accepted that. She then started talking about radiation. Radiation was not usually the standard of care for ovarian cancer. However, she had consulted with several other oncologists who agreed that it would be an appropriate step to take considering the aggressiveness of my cancer and it's quick spread. I know I have said that I do not want radiation, but I heard her out. I just didn't get the point- if she took out all the tumors, then what would the radiation be directed at? A lot of perfectly-working normal tissue and maybe a small few rogue clear cells. She clarified that although she took out some lymph nodes, she had left others that at the time showed no evidence of cancer. So the radiation, in fact, would be directed at the those nodes that she had left. I told her that what I was worried about was my uterus- as well as how the radiation would effect the normal functioning of my other organs. She said that some of the side effects of radiation after surgery is that it can destroy some parts of the bowel that may have been cut. Thus, the worse case scenario is that I would need more surgery and removal of parts of the bowel. It also can damage the outer tissue of the uterus making it unable to function properly. There were more targeted kinds of radiation that might spare more normal tissue, but she emphasized that it was important to not "box" yourself in, and be sure to get the immediate area around the lymph nodes or else it would be ineffective. All in all, her solution was to refer me to a radiation therapist at the end of my chemo so that I could discuss my options. Without radiation she couldn't be assured that I would be completely cured- with it she said I had much better odds.
And what is cure? Apparently it is being free of growth after 3 yrs. Shorter than what I thought. I think I have changed my mind and may give radiation a chance. Depends completely on what the radiation therapist has to say.
So after this lengthy discussion I had one more thing that I had been waiting to bring up since day one. Why was there no option to save my eggs? People have always asked me that and it was even an option on Grey's Anatomy! There was definitely no option pre-surgery when I signed away my ovaries. And so what did she say? Well, first of all she had no thought in her mind that I had cancer in the first place and that she would have to take the other ovary. It was a last minute decision and so I reluctantly agreed that it was a good choice considering how removal may significantly increase my chances of cure. Plus, chemotherapy would damage the other ovary anyways. Secondly, I don't know the validity of this, but apparently only a few hospitals in the country actually do egg harvesting. I would think that the University would be one of these but who knows. I was kind of confused on what she said after this, but eggs have to be prepared and matured before they can be frozen- usually with fertility drugs to increase the amounts of viable eggs that are released. The procedure is also much more effective if they are fertilized first- not really an option for me at this time.
So I guess I can deal with that. Ashley- I'm still gonna hit you up for your eggs in a few years so be prepared!!!! Take care of those babies! ;)
Well it's Saturday afternoon now and I am beginning to feel myself again. Fatigue this week was it's usual. I slept a lot, but got in a day of yoga and a day at the gym. At yoga, I wussed out and wore a head wrap after debating whether to go bald or not. It's HOT yoga and so I got totally sweaty and my cap eventually fell off during a move. I knew of course that this would lead to SOMEONE saying SOMETHING after class. So as expected, a quiet Asian girl approached me and stumbled through the question of "what happened? why are you bald?" I told her it was chemo and then said something that I didn't expect: that she has just finished 8 rounds herself five months ago. She then said that she had noticed my port (how could you not?) and showed me her's (which of course was small and almost unnoticeable compared to my giant green-blue tinted third-nipple tumor) She said I was strong and she was impressed with how I could do yoga during my treatment. We both agreed that the mind relaxation was helpful. I didn't catch her name but I was glad that she was the one in the class who had brought it up. In any case, I left the studio with something else on my mind: why does she still have her port after 5 months? Do I really have to keep that damn thing in so long after my treatment? Argghhhhh I hate it i hate it i hate it.