Surgery and then...

Wow. I just realized that I missed a month.

I went to my gyn onc appointment and had a quick exam. Everything had been healing well and I was only having a little bladder pain during the exam. She then discussed what she found in surgery. My tumor was, of-course- unusual. Again another reason why my outcome is completely unpredictable. The tumor itself was lightly attached to my bladder and so she didn't have to removed much bladder tissue and muscle. It was also still encapsulated- meaning that the malignant tissue was completely enclosed in normal tissue- something that was completely unexpected. Because of this all fluid washes and other biopsies were negative. Altogether the surgery went very well. Some of the malignant tissue was sent to pathology for future testing.

We then talked about the next step. I had a lot to say and a ton of questions after attending the OC Symposium a few months ago- mainly on new treatments and monitoring measures. After all my reservations about chemotherapy, we agreed that it would be the best option. Why did I change my mind? People may think it's a silly reason, but the new drugs wouldn't cause me to lose my hair. This is a little-talked about concern in cancer research, but really should be addressed. Hair is everything. I'm not one to always care about my appearance- evident by passing on makeup, nice clothes, etc- but losing my hair was just an experience that I don't want to repeat. It's so weird being bald with no eyebrows or lashes. I didn't feel like a woman- more like an undesirable alien life form. I know that this goes against previous posts and the title of this blog, but I don't care. It was ok the first time but now...

The chemo drugs that we discussed were using carboplatin again, with possibly Doxorubicin or Avastin. However, there are many factors that will determine which drug to use. To start, it is unclear whether this tumor was considered platinum drug resistant. Drug-resistance is defined as whether there is a relapse-free interval longer than 6 months. Considering that my tumor was undiscovered until last summer & possibly felt on follow-up examinations prior to that, my interval is unclear. Therefore it's hard to tell whether my prolonged Carboplatin therapy was actually effective.

As a side note: my doctor also mentioned that the bladder area had received significantly less radiation than the rest of my abdomen. Most of the beams were focused on my para-aortic nodes, because this was were the cancer had spread. All of this means that radiation may have been effective because there was no evidence of cancer in that area.

The tissue that was sent to pathology, was apparently being tested for drug sensitivity. I provided a link an article about this on my 11/19/10 post. This is a new method of treatment- offering patients more personalized treatment based on actually cell studies. I was excited to find that this was an option for me. Unfortunately, at the time of my appointment, my tumor cells had not grown to a sufficient size to begin testing. Even now, 6 weeks later, the damn tumor is so slow-growing that the lab hasn't contacted my doctor with the results. This really makes a case that the tumor was present much earlier than diagnosed. It also means that I will not start treatment until we have these results. However, because the tumor is growing so slowly, there is really no rush to start empirical treatment with the past-drug regimen.

Another thing we discussed was the CA-125 test. Clearly I could no longer rely on this test because my values had been normal despite having a recurrence. So how else could I monitor the effectiveness of treatment? My doctor said really the only way was more CT scans, but this time every 6 months.

At the end of the visit I asked about outcomes. Already knowing the answer, I asked her whether my cancer will be a chronic problem for me. Most-likely yes. She said that due to the kind of cancer (clear cell) it was pretty likely that it would recur. I asked about what then and about more surgeries, and she said that with my good health that could always be an option. She did offer some hope though: everything about my cancer- age of diagnosis, odd spread pattern, clear cell type, and the characteristics of the new tumor (encapsulation & it's slow-growth) - made my case completely unpredictable. She did say that she still had hope for a cure. With all the new research, scientists are coming closer and closer to developing a cure. Most drugs would probably become available to patients in the next five years, and she was hopeful that I would still be around by then. It may be five years of frustration, but five years I can hopefully remain strong and deal with

Thanks

Just wanted to give a huge thanks to all of those who were so helpful during my surgery.

My roommates: Melanie, Paul, Talisha, Jim, Jasonelle, Paz --> you guys were awesome. Thanks for being there for my recovery. I'm apologize for anything said while I was high on IV Benadryl. I'm pretty sure I even apologized while drugged ;) Melanie thank you for being on the phone with my parents and giving them updates during surgery and for giving me a ride so early in the morning. I'm so appreciative of that and my parents are too.
Shawn: You were an amazing nurse to me. You were there the whole time helping me walk, keeping me company, measuring my pee, making sure that I didn't overdose on narcotics... And thank you so much for reassuring my parents and giving them updates. This definitely could be a promising career for you.
Other friends: Thanks for the support and well-wishes all around. I'm grateful to have so many caring people in my life. Laura and Justin- I haven't seen you in forever and I love that you were able to stop by. I also love the random emails I get from friends I haven't talked to in ages- it's uplifting.
Family: Mom & Dad you worry too much but I feel loved. Ashley, you are so positive about all of this which is so needed. Mom & Dad need that level head. Other fam, I know we haven't connected and kept in touch but I really appreciate the love even from so far away.
Dr. Swisher- you did an amazing job and know your shit! Thanks for managing my unique case and keeping up to date with the new research- it was so reassuring to see you at that Ovarian Cancer Symposium!
Laura the resident: You were the one who told me the results of my first surgery and gave me the news exactly how I would have done it. I love that you were on my case 2 years later! Also I'm convinced that you did my surgery this time. Attendings will never tell you that, but I bet I'm a practice case. No complications or complaints so far...
I highly recommend the University of Washington for any surgery- I guess last year it was in the top 5 or so in oncology.

Thanks again  everyone for the positive vibes!! You all are definitely part of the reason I'm still going strong!!

Night and Day

Aha I figured out how to switch my blog from one google account to another! and it's not easy!!!

Just thought I'd give a quick check up- you know, the post before the BIG life-changing-thoughtful post that I may have at like 5:36am within the next week or so... It's a touchy science like earthquake prediction :| (Seattle is due for a big one!!! or so they have been saying for weeks now)

I'm feeling ok & off the narcs. And no you can't have any because I may need them for a headache some day ;). So stop asking. The other day I did wake up in pain, at 10am. Although I was super excited to be awake in the am. for once, I had to take a Dilaudid and slept until the afternoon anyways. I guess I can't sleep on my left side. Maybe because the remaining organs on my the right side are stapled or clipped in place and that stretches them?

My sleep schedule is wrecked again. I'm in full on vampire mode. What's funny is that in my house I'm rarely even the last one to get up.... at 4pm! I love the upstairs people: we love sleep and we only see the sunrise as we close our blinds and stumble off to bed ;) Wait! Sun in Seattle?

Ok I'm getting slap-happy cause it's 3:38am. I better re-focus. I have a doctor's appointment at 9am on the 8th. No I did not make that appointment. I think I may have to stay up all night to be up in time for that. SCCA should know me by now- I was always the last blood draw of the evening, in the last radiation therapy spot of the day, and had to reschedule chemo once or twice because I couldn't make my 1pm appointments. I am ridiculous but at least I know my body well enough to know what times to avoid!

I'm not sure what the treatment plan is going to be. Chemo? Radiation? Both? None? Honestly people keep asking me what I'm going to do next and I have to almost remind myself what they are talking about. It's weird how right now it's on the back of my mind, and when some people see me it's the only thing they can think about.....

My steri-strips are off and the incision scar will not be pretty. This time I'm definitely gonna have to get that tattoo. Still deciding of what....

I watched a Grey's Anatomy tonight about all the residents doing the night shift- reminds me of my life right now. On the show the lead characters work separate surgery shifts- as the alarm goes off for the male lead, the female character is just crawling into bed. There are nights when I know what time it is when 1.) the garbage men come and a little later 2.) my roommate's (the one who occasionally has to get up earlier than 2pm for work) alarm going off. Those nights suck.

Surgery

Surgery went well. I had a last minute change in regards to my uterus- something which my doctor doesn't understand. I just didn't see a need to take out an organ just because it MAY later house a tumor. There is no way of knowing for sure, and for now I'd like to keep that chance of being a mom...

My doctor said that she was able to remove the malignancy with no problems. It was slightly attached to my bladder and so she took off a layer of tissue from it. She didn't see any other problems. She did a peritoneal wash to biopsy, but there were no other obvious tumors. Pathology is waiting....

Surgery tomorrow

I'm hungry and waiting to poop. Sounds exciting, huh? Lunch today consisted of a little cube of vegetable buillion and hot water soup. Yum and very filling. Tonight's dinner was jello and a huge things  bottle of Blue Gatorade mixed with Miralax. Yay!

I'm not really worried about the surgery at all. Actually I'm more worried about getting up for the 6:30am check in. I have been sleeping in soooooooo much lately that at this point I am almost better off just staying up all night.

So that's it. Surgery. Oh yeah- I'm not getting that historectomy as planned. Someone brought home a documentary on test tube babies and now I can't do it. It may be completely stupid, but at the moment my uterus is fine and dandy- why should I part with it? I will have babies some day....

Dinner

Snack

Plan for Surgery, PET results...

A big sigh of relief. The PET scan made up my mind for me- The cancer is localized, I'm not dying, there is no need to flee or give up on treatments right now. I am actually pretty at ease right now with my medical situation- I may be crazy but the surgery on Wednesday is no big deal to me. YES it's major surgery and I will be out while my doctor carves into me. But I've been through this before. Now I know that there is only one tumor. It doesn't seem to be attached to anything but fat, and therefore pretty easy to remove. The incision will even be right over my old one, and much smaller. Everything seems straight-forward. Now it's just a matter of coordinating. My roomies are going to tale me and be there during to give my parents updates. I'm pretty sure I will be there 3 days again. No big deal.

So now it's time to deal with my other problems. Finances. I can't believe what a mess I am in. I don't think it's ever been so bad. I don't want to complain, but I must comment on how horrible Citibank is right now. I got a bill last month for over $450 for my first loan payment. I called and was like "WTF?" - I just graduated- don't I have a grace period?" Well... apparently you ARE allowed one grace period for the 6 months following departure from school- HOWEVER, I used this time up when I had to take a leave of absence for treatment. Even worse, I also used up 3 months of the only one forbearance allowed on this loan. Because this is a private, living-expense loan, I cannot defer, have additional forbearances, or even change to a graduated-payment plan based on unemployment or financial difficulties- all things which I have been able to do with all of my federal loans. Even with CANCER I still have to repay my loan- $450/month. I called twice and spoke to two supervisors, all who told me sorry, but they couldn't do anything. #$%$^%&%!!!!! WTF? I heard this and basically went off on these people, telling them that they should be ashamed of themselves for even working for such a heartless, shitty company. Not really the customer service reps fault, but STILL!!!

Well I can get a job, right? Hmm. I'm sure you all know how the economy is. I unfortunately have one huge problem getting any old job. I absolutely HAVE TO keep my health insurance. It's based on income- if I make any more than $1100 a month then I lose it. This is equivalent to working for minimum wage, full-time. If I took a job as a barista or worked in retail or something (jobs which under other circumstances I would be working my damnest to get) I would also lose my food stamps- a substantial amount that I depend on. So I would make $1100 a month (which would barely cover rent, utilities, and that absurd Citibank bill) and have NO insurance- owing $$$$ for surgery and future treatments. Is it worth it? NO WAY!

The situation is extremely frustrating- I cannot work as an NP because I haven't taken the test and have been too overwhelmed making life-or-death decisions lately to even study for the test. I can't get an RN job for the life of me because I have no experience. I was pretty sure I could snag one of Planned Parenthood's open positions when I did become certified, but they have filled them since I did my clinical there. Even more depressing right now, I pretty much landed a high school gymnastics coaching team position, but had to turn it down when I found out I needed surgery. I can't spot teenagers after major abdominal surgery.

And my car decided to stop working... the 6-month premium was due... Basically this is what has been on my mind lately. Not the fact that I am having major surgery. Ridiculous, huh?

Here we go again

It's back.

The Facts:

I got a CT scan and it showed a 3.5x3.5 mass above, behind, and to the right of my bladder. I knew it too. A couple of weeks ago I started having some bladder problems- I noticed that I was going to the bathroom a lot, and when I had to pee it was NOW. Also I was having problems completely emptying my bladder. I was hoping it was a urinary tract infection but I had no pain and it seemed to last for weeks. Actually now that I'm writing this I remember that back in August at the end of clinicals, I had really wanted to steal a urine strip for a urinalysis. I should have because then I could have ruled that out. Oh well, lots of "should-haves". What's also frustrating is that at my last appointment my doc felt a mass but because I reminded her that I had a fibroid, she assumed it was that. She actually thinks that it may have been there all along, and she had originally thought the mass was connected to my uterus- now she felt that it was separate.

What's weird is that my CA-125 drawn last week (tumor marker) was even lower than before, at 9. So now we know that it is not an effective marker for my kind of cancer- this is bad news because it is much easier and safer to draw blood rather than subject my self to radiation all the time. Now there is no real good way to monitor the progression and whether treatments are working.

So now what?

1.) Surgery. She wants to schedule it as soon as possible but this month she is fully booked. So she talked to her scheduler to fit me in sometime in the next few weeks. The first available was November 1, which I considered for awhile and then changed my plans. It may sound crazy to you, but Halloween is my favorite holiday and I have so many parties and events planned already for the weekend. Plus, my best friend is flying in from SF for all the fun. Do I really want to spend the day of Halloween doing a bowel treatment and drinking only clear liquids? Hell no. Even if I spent that day at home, I wouldn't want to go under the knife after a weekend of binge drinking. This may be a life of death situation, but I'm choosing to live my life. This thing has been there for months already- how much is it going to matter to delay it a week or so? Now my new date is November 10.

2.) Further lab tests. For some reason I haven't gotten a CBC or metabolic panel recently. I wonder how my platelets are because last time they were really high which puts me at risk for clotting. Also, I've been pretty dizzy when standing lately- more than usual. I wonder if I'm anemic?

3.) More scans. With my exceptional ability to work the system and the thanks of my very understanding doctor, I got her to authorize a PET scan through the SCCA's charity care program. My Basic Health insurance refuses to pay for them, as well as the charity care which has helped with so many other bills. This is the test she wanted to run initially. The scan is ideal for finding other areas of cancer in the body, superior to MRIs or CT scans. By doing this scan, I would know the extent of the cancer and whether to do the surgery to remove the bladder tumor, or to just go ahead with other treatments, i.e. chemo. Basically, she was saying what is the point of taking out one tumor when my body is full of them :( She did reassure me though that ovarian cancer rarely spreads beyond the abdomen and the CT did not show any other tumors.

This is the plan for now, because everything else depends on the results of the PET scan which is scheduled the 23rd of October. Now it's just planning again for yet another year of my life battling this thing