First visit with the Oncologist

A couple of days ago we had our first visit with Dr. Ellis, who will be my oncologist for the upcoming months. He is housed in the brand new oncology wing at the Longview clinic part-time and works the other part-time days on Interstate in Portland, to make a fulltime schedule with Kaiser. The brand new oncology wing in Longview is quite nice and I'm as impressed as is possible for such a doubtful and scary venture. The following is a summary of our lengthy visit and then more (yes, more) of my pondering and indecisiveness about next steps. Your comments are appreciated.

The pathology, as mentioned before, has my ovarian cancer at a stage 2. Technically it's called 1A Grade 2 Staging. The agreement between all doctors is that the cancer could even be a stage 1 cancer (which is great!) however because the surgeon (Dr. Steiner) noticed and removed so many suspicious adhesions, they have decided to consider it a stage 2 cancer (even though those adhesions turned out to be negative for cancer and the margins were all clean.) Research trials are what Dr. Ellis uses to make his recommendations, and those trials are all based on pathological staging to determine outcomes.

Dr. Ellis said that it is hard to figure out treatment for someone in my position, with a possible stage one, but "talked up" to a stage 2 ovarian cancer. Should we do chemo? What kind? Should it be IV or peritoneal (sp?) How long to give it? He recommends that I do 3 cycles of chemo - each cycle 3 weeks apart. At stage 2, I currently have a 70 - 74% chance of being cancer free and it never coming back. Doing the 3 cycles of chemo can improve those chances another 5-10%. Doing chemo will attack the dividing cells and tends to do better early on (post surgery). He was careful to say that these numbers do not necessarily improve my survival rate. He recommends Carboplatin Taxol Chemotherapy, which he thinks will make me lose my hair. (Oh, my vanity. Damn it!) There are other possible side-effects, but none are known for sure until a person goes through it - except the hair loss. (Really?! Grrr...) It can cause nerve damage, but they are usually not permanent, and can cause nausea, vomiting, bone marrow anemia, increased susceptibility to infections, fatigue, tiredness, and so on. Yeah. Really talking up the case for the toxicity of chemotherapy there. He also said 90% of people with ovarian cancer are already fine with 10% going to do better with this chemo. (90% sounds good though - doesn't it?)

The only real way to determine whether the cancer returns is through potential symptoms (which would be hard to detect since many of the areas it would attack early on are already removed) and through a disease marker test (a simple blood work-up) called CA-125. Previous to my surgery, my CA-125 number was at over 500 - it should normally be under 50. We will also test my CA-125 every 3 months for the next 3 years to make sure that it doesn't adjust much.

We continue to ask each doctor the question of reasons for having had two cancers at such a young age and posed the same question to Dr. Ellis. He too had no explanation but was glad to hear of my referral to a geneticist, since a lot of research is based on heredity. He did say that there has not been much reliable research done on people with multiple cancers and the connectivity between those cancers. Most research is focused on specialty areas and are more easily done on single types of cancer. He continued to say that they know only the big stuff: don't smoke, don't drink too much, eat lots of vegetables, drink lots of water - but that it's harder to define who is more susceptible to cancers when it gets down to the details like where you've lived, what kind of work you do, and so on. (This conversation proves the need for more cancer research, so I plan to do some volunteering and donating to cancer research.)

He also talked to me about some of the foods/drinks that I can use to either stave off the cancer or to help with side-effects from chemo. For instance, 500 mg. of ginger root 3x a day will help with the nausea symptoms. Drink about 100 oz of water a day. He recommended a book by Keith Black, MD called Life Over Cancer and a few other resources.

I appreciate all the info from Dr. Ellis and particularly the sense of empowerment he gave me to make a decision about whether to even do the chemotherapy. Some people are shocked by my indecision over whether to do this chemotherapy and it would take a whole 'nother essay to explain all of my reasons, though here's a few: I told myself after my experience with radiation therapy during my bout with papillary carcinoma (the thyroid cancer) that I would never again do something like that. While I didn't promise specifically to never do chemotherapy, it WAS something that was in my head when I made that promise. I have a gut feeling too that makes me real nervous about introducing something as toxic as chemo to my body. I feel OK with the percentages that the doctor gave me without the extra percentages that chemo has to offer. I have also tended to feel that when it is my time to die, there's not much that I can do to prevent that - a few percentage points will not improve my overall chances (that doesn't make sense to the average person, only to me.) Stories of people on chemo are bad. People who do chemo die. (Yes, they also live, but the image is always of people dying. And no, they don't die because of chemo.) Chemo makes me lose my hair. Chemo scares the shit out of me. Seriously. I'm sorry, but it does. I don't wanna do it. BUT...then there's the other side, which is really pretty simple. I love my life. I love my husband, my family, my friends, my animal, my house, nature, me and everything else involved. I wanna live. I don't want cancer again. And that alone makes me think that I may end up choosing to do chemotherapy. I still haven't made my final decision. I'd love your feedback. I've gotta make this decision quickly, but I do plan to take as much time as I need in order to make the best decision for me.

So, stay tuned. More to come. And in the meantime, give me your comments and feedback. I'd love to hear from you.

Visits

I have a large amount of things to be thankful for - incredible friends and family, pets, my great health (minus one or two bleeps on the radar), Brian's job, and much more. Over my birthday weekend, we had many of my college friends come up for our annual reunion of types, and I often times kicked back for a moment and just watched everyone around me and considered how lucky I am to have such a great group to surround me. As I was laughing hysterically at whatever crazy topic we were discussing at the moment (farm names and logos!), I realized how much I needed their support -and yes, the casseroles have been great, but really it's just the simple act of conversing and laughing that I needed so much more.

I think of being a kid in grade school and the whole class was paired up with people in the nursing home. We would write letters and occasionally go visit. It was pretty scary as a kid going into the smelly nursing home and meeting strangers and try to come up with conversation, but it taught some valuable lessons. I learned uncomfortable conversation really wasn't as bad as I feared (I still have to relearn that lesson regularly when the phone rings!), and a whole host of lessons around respecting and learning from elders and compassion for others.

As I continue to heal but still am restricted hugely in my daily activity, I realize the value of these childhood lessons even more. A phone call, an email, and even better...a visit...mean so much. Getting to sit down and talk with my loved ones one-on-one is one of the small joys that I enjoy most in my day to day activities. Getting to see the people who have made a huge impression on my life and hear about their lives takes me away from the constant nagging worry of my health. It helps me to escape my own selfish mantra and to remember the lives that everyone else is living around me. I enjoy being a part of those lives and finding the humor in our everyday challenges. A conversation and laughter is the best gift you can give to me at the moment.

Others have asked about our needs and how they can help. At the top of my list, as I've just mentioned, are visits. Come see me! I may tire easily and have to take a break, but I love to visit with each of you. Food is another great way to help. I am unable to lift anything over a couple of pounds, so Brian is left to do most of our housecleaning, chores, and make meals, beyond his normal work schedule. For some people, that is a normal way of life, but for us it's a bit of a challenge. Having some food options in the freezer is helpful to take one thing off his plate (and to ensure that I'm eating healthy meals, not the Mac N' Cheese from the Kraft box.) Also, I appreciate all the emails and letters - it's great to hear from each of you about the normal going ons in your life.

Looking at the calendar, I have about six weeks left of healing before I am able to return to work and to most of my normal activities. I have started to research some family history and am trying to trace our roots back to Ireland wherever possible. While I was in the hospital, I fanagled a promise from Brian that we would vacation to Ireland within the next couple of years. (Note to self - hospital stays are a great time to get promises for things not easily procured in other circumstances) I would love to visit areas where my family once lived (County Cork and County Clare, as well as Dublin.) I really hope to be able to trace the family history to family still living in Ireland, but that will be difficult. Ancestry.com has been a great help in figuring out some of the pieces though. It's also been amazing to discover how many stories my family has typed up and left behind - I have a journal of one woman, Mary Matilda Surfus Park, who took the Oregon trail from Kansas and settled about 100 acres in the Willamette Valley in the mid 1800's. How cool is that?

As far as health, I have no real updates now. Last week we took out the last of the staples around the belly button. That part of the wound is not looking very pretty, so we'll have the doctors take a look at it tomorrow. I've been on antibiotics for weeks now, so no real infection should be a problem...we hope. Right now we're working on getting my Coumadin levels just right - apparently kale and spinach and green tea have a big effect on your Vitamin K levels, which screws with the Coumadin. Kale has something like over one thousand kg of Vit K per serving, where as most other vegetables have under a hundred. I have kale growing in my garden, so the nurse has promised to work with me to be able to implement small doses of vitamin K here and there.

The Follow-Up Appointment

We met with Dr. Steiner yesterday to go over pathology reports from the surgery and overall it's good news. We are still waiting for the reports to come back from a 2nd doctor, when hopefully things will be finalized. There are some conflicts between what was seen in surgery and what has been reported from pathology hence the desire/need to get a 2nd opinion to confirm all of this. So this is info from the first pathology report, but a 2nd opinion is still coming.

We discussed again everything that was removed, but I'll only mention the couple of new things that I learned here. The full list of everything removed is in one of my other blog posts. A couple of enlarged lymph nodes were removed (they were about 2 cm big!) but fortunately turned up negative for cancer. Those were particularly concerning in surgery because they could've indicated metastasis. There were some pre-cancerous cells found in the cervix too, meaning I most likely was headed for cervix cancer, but now that the cervix is removed, it is not much of a concern. We will do some follow-up testing to be sure that's OK, but after 3 negative pap smears, it will be considered OK.

One ovary that was removed had been twisted and tucked into a little "cave" (my words, not the doctor's!) and is the one that had become quite enlarged with a tumor and tested positive for cancer. It is the one my doctor was most concerned about in surgery and thought that it looked like a potential sarcoma. (This is when we all had our brief freak outs about mortality rates and prognosis.) The pathology shows it to be a normal ovarian carcinoma, not a sarcoma. That is the best news we could hope for and we cross our fingers that the 2nd opinion will concur with this pathology. The five year survival rate is 80% and gets up to 90% with chemotherapy. My doctor has suggested that we will do 3 - 6 "cycles" (appointments) of carbo/taxol chemo and that they will be about 3 weeks apart from each other. This particular ovary had become attached with fibroids to the walls in my body and was very difficult to remove. Even though the fibroids tested negative, the fact that there were so many make this a likely stage II Ovarian cancer.

The other ovary was negative for cancer however was filled with blood, which is indicative of endometriosis. So, the position of the cervix, the endometriosis in one ovary and the funky position of the right ovary are all possible reasons that I was never able to get pregnant. A certain clarity is gained through the fog now. Phew!

Brian asked the question about my immune system functions since I have now battled thyroid cancer previously and am now dealing with the above issues. Due to the lack of family information that we have, the doctor has decided to refer me to a geneticist to find out more information. Ovarian cancer can be linked to breast cancer and particularly if there is family history of either. Since we have scant information on my family history, a geneticist will potentially do some testing to find out more. I am actually excited about the idea of finding out more about my genes - I think we will definitely get more information about my health concerns (which could be scary too!) and how it relates to genetics.

I also asked about hormones and menopause - that's one of the joys of womanhood that I get to face early. I always figured I had another 10 years or more before I had to figure out the meaning of menopause, dammit! Basically, my doctor has recommended that we not look at hormone replacement until we see how the side effects are treating me. I forget specifically what she said, but basically the hormones could trigger the cancer, so we'd rather wait and see if it's really a necessity before jumping into hormone replacement. In the meantime, some of the fun potential effects of menopause are: brittle bones, hot flashes (and yes, I have started to have some of those, but they have been short in duration), lack of libido, weight gain, hair in startling places, memory lapses, and more. So many cuss words running through my head!

Lastly, a referral has been processed to an oncologist. I will soon meet with an oncologist and talk more about the future chemotherapy treatments. The Longview/Kelso Kaiser clinic has just opened a new oncology wing and Brian and I got a tour of it last week. It's very nice - modern and clean. However, I have to admit that it seems a bit scary too. There were several rows of brand new chairs set up next to each other - kind of like at a dentist office. They have their own spaces, where one could watch movies, or listen to music or play on the computer, but you could also just look next to you and see a long line of other people getting their chemo treatments. Freaky!

I've never liked the idea of filling my body with chemicals. I suppose I've been doing it my whole life, to a lesser extent - what's in that beef I've been eating, or the spray on those veggies, let along the alcohol I drink or the medicines I take. But the idea of knowingly allowing a whole lot of toxic chemicals that effect both the good and the bad cells of my body - that's scary. The wig section of the oncology department in Longview freaked me out. What's the likelihood that I could lose my hair? Holy hell! My hair is a strong identifier of me - but I better get used to letting that identifier go. I suppose this is a good lesson in letting your soul shine through - your outer appearance is something we all strongly identify with, but my appearance could become altered - it's all physicial. I am still me on the inside. And then again, some people don't lose their hair and have no real side effects from chemo. Which will I be?