The Unknown

As I have gone through this experience, I have struggled with my desire to want to share it with people and my inability to explain what I have been going through. This journey of cancer and chemo is a new experience and nothing like anything I have ever gone through in my past and I often times come up blank when I try to figure out how to share my experiences with others. I have always tried to communicate with people as openly as I can, and I continue to do so, but it has been a real challenge when I often times don't even know myself what it is that I'm feeling or how I am doing. Sounds strange, doesn't it? How can I not know how I am? Sometimes there just aren't words or analogies to accurately portray what I would like, and sometimes I just don't know. It's frustrating. I would much rather be able to put it into easily relatable language so we can converse about it, but instead I have to ask your patience. It's not that I don't want to talk about it - I do. I just can't find the right words.

A great example of this strange phenomenon is my "tiredness." Our language is lacking when it comes to the word "tired" similar to the way it's lacking in the word "love." In Latin, there are three different words for love, all of which explain different types of love. Our language only has the one word, but we love in many different ways. I now believe that to be true for "tired" too. There's tired like I'm ready to go to bed and fall asleep. There's tired like my body aches and is ready to just be still for a while. There's mental tiredness. And then there's the type of tired you get when you're ill. Cancer tiredness isn't really the same as any of these other types of tireds. I'm not really physically tired...well, maybe a little. I don't have the words to describe it, but all I know is that I just want to sit down and chill out...that's the chemo tired. Unexplainable.

I have started back to work and there have been many surprises. I am doing mostly paperwork since I am being kept away from the general public, and it hasn't been nearly as tiring as I thought. (Though when I get home, I crash - I watch TV and I'm lucky if I can make dinner. Again, that strange tiredness.) My coworkers have been GREAT about reminding me to take it easy and helping me to take care of myself. I have been very impressed by their concern. On the other hand, I have been disappointed in management - they have decided to put me into the greeting position at work, which has the most contact with the general public of all our positions - seeing about 250 - 400 people a day. Management says this won't start until my doctor's note allows, but that's only in two weeks. I'll go from seeing 0 general public to several hundred. I meet tomorrow with the Accommodation Specialist and my boss and the main manager of our office plus a union representative to further discuss my need to stay away from the general public and how they can accommodate me. I want to apologize for the...inconvenience...and yet I won't. I need to take care of my health and they need to know what they can do to help me with that - and I won't apologize for it.

My body continues to heal and adjust to it's new self. After talking to my counselor today, I realize I have been struggling with the dichotomy between wanting to return to my old self, my old way of life, and yet knowing that I won't ever be the same again. She made me realize that I have lost a part of myself and that I need to process some grieving for that. I hadn't thought about it in terms of grieving, but once she said that word, it clicked into place. It may sound a little hokey, but the reality is that I have gone through huge changes in a short amount of time. I will never be the same person that I was, and yet I am still me. I am struggling to catch up with the changes that have happened. I am still figuring out which pieces of me are the same and where and how I have changed. I have not reconciled my two selves into one whole being yet, but I'm working on it. It'll just take time.

My hair is coming back. I notice much more stubble on my scalp than previously, but a lot of white stubble on the side (I keep hoping it's just peach fuzz and the color will come back soon!) and one big bald spot where no hair is growing right up front. I'm hoping that'll fill in soon. My coworker was asking me whether they make partial wigs in order to cover that one bare spot - I told her that's what spray paint is for. :)

I continue to be very "sore." My knees ache, my body feels every movement very distinctly. I laughed this morning as I was trying to put on a pair of pants and it hurt to raise my legs high enough to put them into the pant legs. I continue to research yoga, and if all goes well, Brian and I will both go in for some private yoga lessons tomorrow. Once my muscles learn a little flexibility and Brian learns some correct yoga poses, we will join some of the regular classes offered to the public. I am looking forward to teaching my muscles some of the strength and flexibility that I once took for granted.

We met with the doctors for my follow-up appointment, post-chemo, a few weeks ago. Everything looked good and we will continue to monitor me with check-ups and blood work every 3 months for the next two years. Then we'll lessen the appointments to every 6 months for the following 3 years. If I go 5 years without any changes, I will be declared free of cancer. Keep your positive thoughts coming!

Discoveries

After I wrote in one of my blog postings about needing to try to find my dad, Laura contacted me about her talent in doing family research...and the short of it is that she was able to find an old address for him in Vancouver. I wrote up a letter and we have since been in contact! The good news is that he is open to continuing contact together and we are learning more about each other with each email. The not-so-good news is that many of the females on his side of the family have had various types of cancer. Brian says that some of those cancers shouldn't matter much in regards to my own health since they are not passed along genetically. I continue to work with him on getting more info about those family members and to work on our own relationship too. As we gather more info, I will pass it along to the genetics doctor and it will help us narrow down what types of genes I could have that might link to other cancers. Genetics is a field with thousands of possibilities - I imagine it to be quite challenging and interesting for those who work in that field. I also find it interesting, but also a bit worrisome!

Brian's parents were in town last week. We celebrated the occasion by cooking up our very first farm-raised turkey. It was quite tasty and pretty exciting for Brian and me. I think his parents were a little less excited about the idea of eating one of our turkeys, especially when their friends are still running around in our pasture. Brian and I were also excited to become parents...and then again and again! I am speaking of our chickens finally starting to lay some eggs. We were very excited to find our first eggs in the nesting boxes. We also have been harvesting tons of veggies and fruits from the garden and orchard. We have lots of apples and pears in season, not to mention the tomatoes, zucchini, chard, kale, lettuce, tomatillos, squash, pumpkins, onions, peppers, basil, radishes, cabbages, cauliflower, broccoli, and more! I'm finally getting to the point where I can't keep up with everything as it harvests, but we've had many healthy meals because of it.

I go back to work in one week. I think the blog posts will continue to slow down as my doctor appointments become less and my health returns. Thanks everyone for reading as we've gone through this journey together.

Bald notions

I'm bald. We took the clippers to the last little tuft of hair a couple of weeks ago and it's strangely liberating to have no hair on my head - no reason to use more than the smallest dot of shampoo, no drying or styling of hair. It's a bit of a shock to look in the mirror and I see that same look of shock reflected in the faces of the people who know me too. I don't mind that others seem speechless (what do you say to a newly bald person anyway?) because I feel the same way. I use the scarves regularly when I leave the house, but it's much more comfortable and freeing to just go bald. While I love all the different styles and types of scarves that I've gathered, they become hugely uncomfortable when I have a hot flash and I usually end up ripping them off my head to just get a slight relief from the heat of the flash.

I had my last session of chemo last week (a week and a half ago now) and it went fine. No real news to report other than being hugely relieved that it's over. And yet, I don't really feel like it's over. I've really just started this battle to remain/get cancer-free, and it will be something I fight for the rest of my life. I can't really get back to life as I know it just because the chemo is over. I have all of these signs that keep reminding me of the battle every day - a bald head, numbness in my feet, hot flashes, a sensitive belly, and I am not the same person of a few months ago. I am more serious, more cautious, have more mental strength, and struggle with the burden of "cancer" every day. I am constantly reminded of my mortality, my control over my health, and battle with wanting to return to my "simple" life as I knew it a few months ago - but really that's impossible. So I struggle with figuring out who I am now and what changes- mentally, physically, and spiritually- will become permanent in my life.

I continue to see my acupuncturist who has been fabulous for helping with some of the side-effects. I am now looking into yoga classes in order to stretch my sore joints and muscles and help me become more aware of my body movements. I feel so clunky/junky after the surgery and all this chemo. My body has been through a battle and has visible and not-so-visible scars. I feel unattractive, weak, uncoordinated, and generally pretty dowdy. I need help to recover some sense of unity between mind, spirit, and body - they all seem so disconnected right now. I look in the mirror and don't even recognize myself anymore. I am ashamed of my post-surgery post-chemo body and am sick of feeling that way. I want that connection between soul and body reestablished and am hoping yoga will help with that.

My return to work date is set for 9/30 and I am grateful - grateful to push it out a little further but also grateful to have a date to look forward towards. I have had several colds over the last few weeks as my immune system is busy fighting other things inside and I think I will still have immune issues when I return to work, but I look forward to getting back to that normal daily routine. I look forward to having a purpose to each day and to interacting with my coworkers more regularly. I'll probably regret saying that within a week of returning to work!

Round 3...Psyche!

Yesterday was supposed to be round 3 of chemotherapy but we ended up delaying it because I've come down with a nasty cold. It started to really manifest on Tuesday; I had a fever of 101 degrees on Tuesday night and felt better (at least non-feverish) Wednesday morning. I still went in for my doctor's appointment on Wednesday but upon discussion with the doctor (my heart rate was racing and I felt wiped out) we decided to delay the chemo appointment for one week.

Getting sick has made me realize I've been pushing myself too much. When I feel good I want to do the things I would normally, but I have to restrict myself more than normal. I'm much more susceptible to germs and have to play the part of caretaker for myself. It has also made me more aware of my doctor's request that I not be around crowds of people. That's been a hard one to follow, particularly as I feel good and there's been a plethora of summertime activities to tempt me (baby showers, wedding showers, festivals galore, etc.) But with this one sickness, I now know the importance of that advice and will try better at avoiding those things. I know, boring. That's me. :)

I am already starting to feel much better today, thankfully. Besides being sick, I have also recently noticed a new side-effect from the chemo - soreness. I thought that I had just done a little too much weed pulling one day, but I notice now that I constantly feel stiff. It feels just like muscle soreness or having sat in one position for too long, except that it also happens in strange places, like my feet. It's taken me a while to realize that it's not from over-doing one thing, but that I just constantly feel sore. It's especially noticeable after getting up in the morning or after having sat down for a little bit.

I have been to a new acupuncturist over the last few weeks and she has been great. I decided that I didn't like the other one I had been seeing, so sought out this new one. After just one appointment, I could feel the neuropathy (the numbness and tingling) in my feet lessen. It's still there, but much less so. I also feel very calm and relaxed after each appointment, so those two things make it well worth the time.

Due to my sickness, pushing out chemo, and my realization that I've been trying to push things too much and need to stay away from crowds and germs, the doctors and I decided to push out my work date even further. Apologies to my co-workers! We've decided to wait until October 1st to start back to work now. Hopefully that will get me past the worst of the side-effects.

I'll keep this one short and end here. Just wanted to update everyone on what was supposed to be my 3rd appointment. I'll update again after next week's round of chemo.

The Geneticist

'ello everyone. My aunt Judy sent me an email link to another woman's blog who is also dealing with cancer and just finished her 2nd round of chemo. I was amazed by her sense of humor and honesty and if you're interested it it, you can find it here (check out the name of this link!): http://www.puttingonmybiggirlpanties.com/ I think I've said that to myself, particularly when facing the first time of going in for chemo - Time to pull on my big girl panties and get 'er done.

Today was my first appointment with the geneticist. They said a lot of big words all jumbled together. I wished Brian was at that appointment with me so he could dumb it down a lil' bit, but I think I caught the gist. My main two goals are: 1. Figure out whether I have a gene issue or an immunity issue that's caused two/three cancers already at a young age 2. Figure out whether I am able to take hormone replacements without causing significant increases in my chances or reoccurrence of cancer. I met with a genetics counselor and a genetics doctor. I'm not sure exactly what the genetics counselor role is but she seems to be the go-between for the most part.

We discussed first my family tree and any incidences of cancer that we knew and also my own history of papillary carcinoma (thyroid), endometrioid ovarian cancer (a specific more rare type of ovarian cancer), and the pre-cancerous cells found on my cervix. We automatically dismissed the cervix cancer since that is hugely attributed to factors outside of genetics. The next step was to see if we could draw any genetic relations between the thyroid and ovarian cancers. Though we only have information for one side (the maternal side) of my family, they think it is unlikely that I have the BRCA-1 or BRCA-2 gene, which links ovarian cancer with breast cancer and is common amongst women who have ovarian cancer. Their main reasons for dismissing this initially (we may follow up on it later on after trying one or two other things first) is due to the particular type of ovarian cancer I have, because there are no incidences of breast cancer in my family, and I have no other "side-effects" typically caused by this gene like large amounts of skin tags (they said hundreds in one area.) They then looked at whether there are any other genes that link my type of ovarian cancer and thyroid cancer and came up with the P-ten gene, also known as Cowden's. My next step is to go in early next week for some blood tests and then they'll let me know within 40 days whether I am positive for Cowden's. If it is negative, we will most likely attempt the BRCA-1 and BRCA-2 testing next.

The geneticist also would like me to continue searching for information related to my dad's side of the family. This has been a stumbling block for a number of years now. My biological father's name is Richard (Toby) Jones, but try doing a google search on that one - there's 1,700,000+ results for Vancouver, WA with that name. I have asked my aunts to follow up with their high school friends (my mom and dad attended high school together with my aunts and uncle, so had similar friends throughout the years) but so far, the main connection has remained elusive. I will continue to bug my aunt Joan (are you reading this Joan?!) about seeing if we can get connection through her ex-husband, Brent. Vancouver can't be that big, right? I had been trying to reestablish a relationship with my dad previous to all this cancer talk, but now it makes it even more important.

My foster-mom's mom (so foster-grandma) passed away last weekend, so I went to the memorial service yesterday. There was something really lovely (maybe I am meant to be a farmer!) about taking a handful of dirt into my hand and slowly pouring it into the grave to bury the ashes. I really liked the symbolism of how we all are a cycle of life and nature.

And in a completely different vein, I have to mention something that's been bugging me. I've had a big surgery and have been undergoing chemo. I'm not dying, I'm not really even "sick." I have had a lengthy recovery time, first for the surgery, second for my mental health and now third because of fear of catching germs and sickness from others. I have been catching little glimpses from people, mostly co-workers, who are wondering how I could possibly be out of work for so long and have such a nice tan. OK, I admit it would look much better if I were a nice pasty white-green color, something much more sickly and pale. But this experience and tan hasn't exactly been a walk in the park. I do feel much better and I do have a lot of strength and I do sometimes enjoy my time outside watching nature, playing with the animals, and doing some chores. I am enjoying life as much as I can, as we all should. Yeah, you should be jealous of my tan - it's the best one I've ever had. But trust me, you don't want a tan like this for the same price I've had to pay. My doctors have told me to stay out of the sun, particularly because of the burning effect of chemo - but damn! It's 90 degrees outside and I live on a farm. How exactly does one stay out of the sun in such circumstances?

We've updated my mohawk recently. I'll take some pics after styling and post them. I'm starting to lose my other hair too. I haven't had to shave my legs or pits in weeks. It's great. But now I'm losing my eyelashes and my eyebrows too. Damn, I should've flunked art in kindergarden - do they really think I can draw on a semi-arched eyebrow!? On the bright side, the mustache and beard effects of menopause are completely gone for the time-being! Damn, I'm a sexy beast. LOL

So what are my needs at the moment? I'm doing pretty good. I love the influx of scarves. I need to learn how to draw on some eyebrows and how to apply makeup to my "new head." I'm digging the gypsy bohemoth look of the tied back scarf and big hoop earrings. I need to redefine my sexiness. It's hard to find oneself attractive as a bald hairless slug of a being, but I think it's possible. I just need help figuring out how to make myself look the best I can. The trimming of my mohawk helped quite a bit.

Loves to you all and feedback welcome as always. XO

Let's talk a lil' Food

I'm bored of writing and thinking about the same old things - side-effects, chemo treatments, hair styles, and so on. I feel like that's been hashed a few times too many. I'm not promising I won't talk about it all again in the future, but for the moment, I'm done with that. Instead, this entry I want to turn towards the foods that I've been enjoying, mostly from the good habits of my friends who have taken my diet much more seriously than I intended! LOL It's been a great transition to eating mostly vegetarian though.

Laura has been very good about making sure that we eat a ton of kale. Our garden is overflowing with kale and she makes sure that it doesn't go to waste...much waste, anyway. I have made some kale chips, which are nothing like potato chips except that they're crispy vegetables, but they were still pretty tasty. Laura has made several indian dishes, a egg and potato kale breakfast treat, a potato, kale, and sausage hash, and some Italian wedding soup creation - some with sausage and some without.

Brian doesn't like mushrooms or olives, but I can't be vegetarian without trying out a few of these yummy veggies here and there. I bought some big colossal green garlic-stuffed olives along with some marcona almonds fried in rosemeary and some goat cheese and ok-mok crackers. Yum! Had to have a little red wine with those snacks - how could one not? I also made a mushroom casserole from the 101cookbooks website with this recipe here: http://www.101cookbooks.com/archives/mushroom-casserole-recipe.html


I tried making some of my own vegetarian bean burgers in order to freeze and have on hand while Brian is busy grilling up all the pork that we just got from our 1/2 a slab of pig, but they turned out a little mooshy. Apparently, you need to fry them after making them, THEN freeze them, then recook them when you're ready. Oops. Well, that's a learning curve. They're still tasty moosh at least.

I also realized that beans is going to be a very important part of getting my protein and staying full while on this diet. I cooked up a bunch of pinto beans we had lying around, but instead of refrying them with bacon grease (yum!), I tried out coconut oil, which gave them a Caribbean flair.

Speaking of which, I think some fish tacos might be in order soon. Now that we have caribbean beans in the house, why not go the whole mile and do up some shrimp or fish tacos? One of the hardest parts of this diet has been to find fresh seafood (I'm not fully vegetarian.) One of my main goals has been to not eat fish and meat from the supermarket because you just don't know what's been done to that stuff. You'd think that living fairly close to the Pacific Ocean (it's only an hour away really) that we'd see a lot more fresh seafood, but apparently the marketplace must be difficult for fisherman to realize inland.

I took a page out of Laura's repertoire and stole the idea for making some sauerkraut. Sauerkraut has never really been a like of mine, until the last year or two. We have a ton of cabbage in the garden, so I figured why not try it out? I just shred up the cabbage in the food processor, added salt and kneaded it all together. The bruising, cutting of the cabbage mixed with the salt, drew out quite a bit of moisture from the cabbage giving it a watery bath to sit in. I had to add a little salt water to make sure it was fully covered so no bacteria grows on it, but now it just sits out on the counter (covered) and we can eat it in a week, or two, or three, depending on how sweet or sour we want it to be. Pretty simple stuff! So I've been considering making a faux Reuben for dinner soon. Tempeh for me, and corned beef for Brian and anyone else who may be visiting. Yum!

Laura and I also made a trip out to the Mossyrock Blueberry Festival, which was fairly small and uncrowded due to a little rain, but we managed to come away with quite a bit of fruit - blueberries, nectarines, and peaches. Right now, we're working on some nectarine sorbet. This morning we had a blueberry coffee cake. Last night we had a blueberry buckle. AND, our apple trees are starting to produce! So two nights ago, we had apple streudel. We've been working hard to making desserts out of fruit to help hold off my sweet tooth. It has been insatiable!

So, that's some of the latest in the land of eating for Rachael and Brian. Christine has also been a great help in figuring out some good eats, and I also appreciate the recipes that many of you have sent on. Oh yeah, I tried marinating and BBQing some beets the other day, but that effort was met with not exactly favorable results from both Brian and me. Well, we'll keep trying on the beet front to make something a little more appetizing.

Otherwise, health is OK for the moment. I tire easily. I haven't been sleeping well. My feet are numb and tingley. I am careful to stay away from crowds of people and those who are sick. But I feel OK and have been happy to have time to myself for some mental processing of all that has happened for the last few months. I continue to feel happy and lucky about my lot in life and the amazing people who are reading this and supporting me through this all. You guys are amazing. Thank you!

2 down, 1 to go

I made it through the 2nd chemo appointment yesterday. I visited with a different doctor this time since my doctor is on vacation. Dr. Chambers was very personable and also was a proponent of (w)holistic care, which I deeply appreciate. He and I discussed naturopathic/acupuncture care and he has processed a referral to help get Kaiser to pay for these appointments. He also talked to me about pushing my return to work date back even further. He is particularly concerned about my immune system and having me see so many different people on a daily basis, which could make me very susceptible to germs and illness. He recommends that I return to work at the end of September/beginning of October, but I am going to discuss this with my boss and see what options are available to me.

The chemo appointment itself went about the same as the first time. I'll spare the details, but if you're interested in finding out more, you can read the entry on my first appointment. This time we tried my left arm for the IV and the vein was a little more finicky, so there was a little pain here and there and it's still sore today. I also found out that Kaiser will pay for a free wig in partnership with the American Cancer Society, so maybe a wig will be in my future after all.

Speaking of hair, it started coming out in clumps last week, so Brian and I sat down with the shaver and shaved it into a mohawk. I'll post a pic of it to this site after getting out this entry. Probably today or tomorrow we'll shave it completely, or leave a few bangs for fashionable accessory to the scarves I've started to wear. I'm excited to have some help from a good friend in learning how to tie head wraps in a variety of ways. That will be very cool.

I also got hooked up with a woman through the SW WA Ovarian Cancer Alliance, who is around my same age and has gone through Ovarian Cancer herself. She and I had a great conversation on the phone and will continue our phone relationship with the hope of meeting each other in the near future.

I wanted to follow up and say that I did have an appointment with a Cancer Counselor through Kaiser, which went well. I think the main gain was to find out that I'm doing well with this: a little denial is healthy (Hah!), I have a great support team, and I'm seeking out the help I need. This blog has been extremely helpful in getting out my feelings, keeping everyone informed, and letting you all know how you can help me. It's a win for everyone.

I am wiped out today and feel weak and susceptible. I'm just taking it easy and drinking lots of water and tea to flush these toxins out.

I have started to see an acupuncturist, mostly for the hot flashes, but also for some numbness in my feet. I've been twice now, and noticed some improvement in hot flashes after the first visit. Since I was a little late in figuring out that I needed a Kaiser referral, those visits will be out of pocket. I'll also have to see the guidelines that Kaiser gives to figure out whether I can continue to see this particular person or if I need to change to someone else.

Needs this week? Nothing too new: food & hats/scarves. The doctors have really pounded it into me that I need to stay away from group gatherings, so I'll need to focus more on having mostly adult visitors to the house (those pesky kids and their germs!) I hadn't really considered the germ factor into all of this, so I continue to learn and adjust my lifestyle to accommodate my health.

The diet is going well so far. I've had a few incidents where I didn't plan appropriately and ended up doing the carb overload rather than adding in a bunch of vegetables as I should have done. I ordered pan fried noodles from a restaurant the other day and forgot to mention that I wanted veggies, so I just ate a plate full of noodles! I made a simple lasagna the other day (with the help of my good friend, Holly) which turned out great, but I didn't think to adjust the recipe to include more veggies until we were just about done. At least we had salad on the side. So I'm still learning and adjusting to these changes. I still haven't cleared dairy or sweets off the menu yet, which I need to do soon. The apple trees are starting to produce fruit, so I'll switch my sweet tooth to lots of baked apple goods. That's a decent compromise.

Thanks to everyone for your continued support. As I mentioned in my letter to these damn cancer cells, you guys are my army. I need your support, your suggestions, your recipes, your hats, your notes, and love. I appreciate all you have done so far, but we're not even half way through the battle yet. Thanks for all your comments on my strength - it really helps me to hear that from everyone. Peace and good health to you all.

Update 7/27/10

Still feeling good and continuing to read Life Over Cancer by Keith Block, MD, which was recommended by my oncologist. It's making me realize how taking care of oneself...REALLY taking care of oneself is a full time job! I'm supposed to eat healthy foods, seek out mental assistance, see a naturopath, take supplements, exercise more, and rest as needed. I'm barely keeping up with all that and I haven't even thrown work into the mixture yet!

I have started the "pescatarian" portion of my new lifestyle change, as recommended by this book in order to assist my body in fighting the cancer and any possible thought it might have of recurrence. Wikipedia defines "Pescetarianism, also called pesco-vegetarianism, is the practice of a diet that includes seafood and excludes other animals. In addition to fish or shellfish, a pescetarian diet typically includes some or all of vegetables, fruit, nuts, grains, beans, eggs and dairy." I am in the process of slowly phasing out dairy from my diet too, but that's much MUCH more difficult than giving up chicken and beef. No Ice Cream!? No Cheese!? No Way. Well, for the moment, anyway. I also am staying away from refined foods. Dr. Block's preview of the diet explains, "If you eat too much dietary fat and refined carbohydrates, you run the risk of increasing body fat and weight while weakening your immune system and increasing oxidative stress, inflammation, and blood levels of substances that promote tumor growth and angiogenesis. Diets high in fat tend to cause more DNA damage, which allows mutations to accumulate in the cells that make up tumors. The more mutations, the more aggressive the cancer and the more likely it is that malignant cells will survive chemo and radiation and travel through the bloodstream to seed distant sites of your body with cancer. It is no surprise, then, that cancer death rates are generally lower in populations that follow low-fat, vegetable-rich diets." Diet is one small piece that I can control and it seems necessary to implement the recommended changes now. I want to kick this cancer in the ass!

I have scheduled an appointment with a therapist (per several entries ago) through Kaiser and have also been in touch with the Ovarian Cancer Alliance of Oregon and SW Washington (http://ovariancancerosw.org/) which has offered support in numerous ways. Besides offering meetings and resources, they have also put me in touch with another woman around my same age in Vancouver, WA who has gone through Ovarian Cancer. I think it will be helpful to meet and talk with her, since this type of cancer is so unusual in young women. (Yep, I'm still considered young.) Just being able to talk to another 30-something-year-old woman about menopause side-effects (hello hot flashes!) will be nice, let alone having one more branch of support.

I am beginning to focus on a small exercise regiment as well. I have lost most of my muscle tone, but particularly in the abdomen region since that's where the surgery occurred. My main goals at this point are small: focus on posture, breathing, and do a little aerobic exercise every few days (walking mostly for now.) I was so protective of my abdomen after surgery that I have developed more of a hunch and need to focus on straightening my back and using my core muscles. Pilates has taught me (in the past) how to incorporate correct breathing techniques and some abdomen exercises, so I hope to implement those soon too.

The original plan had been to return to work this week per the Surgeon, however my Oncologist had other thoughts about that idea. He would prefer me to stay out of work until after all chemotherapy appointments, but I'm not sure work will be in full agreement with the idea of me staying out through September. I made a compromise with everyone and promised to wait until after my 2nd chemo appointment to see how I feel. My oncologist is afraid that as I go to my next appointment(s), the toxicity will be building in my body and that I may not feel as well, but he is also cautious about the mental toll that this is taking. We have tentatively set my return to work date for August 16th and only part time at that time, but we will also have to wait and see how the next chemo appointment treats me. My co-workers have been GREAT about supporting me during this time - putting together a huge goody basket, offering meals and entertainment, and donating "shared leave" so that my time off has all been paid so far. (There is no short-term disability program through the State - Can you believe that?) The Shared Leave will run out before I return to work, but it has been very kind of them to carry me through this far. Thanks to everyone at ESD!

I continue to have hot flashes incessantly and have had some numbness and tingling in my feet. I have begun to notice my hair falling out rapidly, though I don't see any patches or thinness thankfully. That time will come soon enough though. My boss at work has agreed to help me in the art of head wraps, which I am terribly thankful and excited for. I have always loved the look of head wraps, though have never ventured into the art form myself. I think I'll be able to exhibit some neat styles with grace. Wait, when have I ever been known to be graceful?

As far as needs at the moment - I need healthy recipe suggestions! I've been finding quite a few out there and some people have sent me suggestions, which have been great. Keep 'em coming. I'll need head wrap suggestions too. I also would like a comment on these posts from you. WHO are you? Give me some feedback, comments...even just a quick hello is appreciated!

Dear Cancer Cells

Dear Cancer Cells in My Body,

How dare you try to take over my body. I am pissed off about your sneaky attack on my turf and I declare war against you little fuckers. You are going down. You have no right to this terrain and while you may have had a good run in the past, I am through with sitting idle and letting you use my body as an adventure land map. You are no longer welcome and I suggest you find digs elsewhere because I have begun my campaign to knock you worthless cells into oblivion...and I intend to see my war campaign through. Let me summarize my plan, so you have no doubt about my serious intentions to obligate your existence on MY body.

First of all, I have enacted chemical warfare on your asses. My body and mind are strong and can handle a little toxic warfare, but how do you feel about chemo aimed in your direction? I can see the beads of sweat building on your upper lip. But chemicals are only Phase One of my plan. I no longer have the same fear of them that you should...they are on my side and are helping to work against you and your sneaky plans of demise. I won't tolerate your shifty rebellion in my land.

I have also begun to amass my troops, and it is a number far larger than either you or I could ever have conceived. My friends and family have rallied and are working against you constantly. I have heard from people that I haven't been in touch with in multitudes of years, but they send me tidings of strength and support from afar. I only have to say the word and everyone will jump into action to fight you to your death. My doctors and nurses are the best in their fields and have years of kicking ass against cancer cells. They have an attitude of no holds barred, encouraged by my own attitude of war against you. They have promised me a relentless war until you have tucked tail and ran. I have also rallied naturopaths, psychologists, and mentors who have been down this path in battles against you, and they too agree that my strength surpasses your own in exceeding amounts. They too will fight beside me.

You have underestimated my strength. I have had moments of uncertainty and fear, but I have never doubted for a second that I wouldn't fight back in all ways that I could. I have had to make choices about strategy, but now I know that I will never stop coming after you and I am on constant alert to watch the borders of my body so that you will never return. I plan to starve you out of my system. You have fed on my weakness for foods for far too long and I now declare an end. I will now focus on fruits, vegetables, and whole grains that have reputations for bold warfare action against you. You will no longer find a friendly feeding environment here. In fact, you will find that every taste you take, tastes of antioxidants and and cancer-fighting nutrients - all the things that good science show you fear.

You have had your run, but it is now over. You have been served notice to evacuate these premises immediately. I will not tolerate loitering of any kind and promise you that I am coming after you full-strength. Do not underestimate my determination and strength. I WILL kick your ass to the curb. You are now evicted from MY body. You are never allowed to return. Be gone.

In all sincerity,
Rachael

PS - My God, it feels good to be in control again. Ah, home, sweet home. ;)

Coming to Grips

I think that just now the shock is finally wearing off from all of these happenings the last few months. I am struggling now with facing needed change in my everyday life. I have started to read Life Over Cancer by Dr. Keith Block, as recommended by my Oncologist. It's been a great read so far, bur I'm just getting to the nitty gritty about diet, supplements, exercise, and mental/spiritual health. I think in my own case, I feel very susceptible to cancer; I've had two already, so what's to stop me from more? Something in my body is not functioning the way it should or some habit I have seems to be making my chances worse than the average person. It seems like this should be my wakeup call to make some much needed changes....but they continue to be the same struggle they always have been. I'm not sure if I expect too much of myself or not enough. I can eat well for a few days, but then laziness or lack of planning kicks in and we're eating pizza (which, although I haven't gotten to the food section of this book, I'm fairly certain pizza is not going to be a recommended daily allowance.) I also am trying to figure out how one is supposed to put all of these pieces together when I'm not working right now, let alone when you add back in a normal 40 hour work week. It seems like people who have cancer should be put into a learning program where they learn all these pieces about latest research on food, exercise, diet, supplements, get to meet others in similar situations, and learn how to cope with those things moving forward, I am shocked that I am expected to return to work soon, when I'm still coming to grips with the fact that I have a new cancer, just had surgery, am doing CHEMO, and dealing with the fatigue and other side effects. My god! So I'm supposed to be super woman and deal with my own mortality apparently, besides try to make money and ends meet, etc, etc. Can't the world just pause for a few minutes? Can't I have a few months to adjust to this new life I'm supposed to adopt for my own good? It may seem a little whiney, but on the other hand, it's no wonder the average American has so much trouble making these changes In their day to day lives. We are not taught how to put new emphasis on things that put our own wellbeing in focus. We are taught how to quicken our demise - eat cheaply and quickly, give up that walk for an hour of Real Love. Ugh.

And I feel guilty for wanting more time. My coworkers are struggling dealing with the highest unemployment rates and crazy state demands, and they they see me with a tan and must wonder how long I'll "milk" the system. Oh, you can work in your garden but you can't work in an office? My physical self goes through fluctuating energies and strength, but it's my mental self that's struggling more now. I feel a huge pressure to return to work, and yet I also feel like it's all moving too fast. I wanted to slow down everything along this journey, but haven't been able to...yet. My mental capacity is just catching up to all that has happened to me. And you know what? It's not all roses. It is angering and saddening and shocking to have to deal with all of this. I am happy to be alive and am pissed off that this is happening...that my body is betraying me. I am pissed that this is solely my responsibility to deal with and make better. I'm the one who has to accommodate the demands of work and life with any healthy positive changes that could improve my survival rates and chances of getting any more fucking cancers. It just seems like an insurmountable burden at times. And yet, I want those changes. Do I just have to pull on the big girl underwear and do it myself? Can I?

I also realized today that I think it's time to call in some additional help. I've been going through a lot and am just now facing what that means, and I think some counseling would help me to process and deal better. As I type, I am making the commitment to call the Kaiser Cancer Alliance tomorrow and look more into counseling help. I was thinking of a good friend of mine today who has faithfully gone to the same counselor for over 10 years every week, driving one hour to get there and another hour home. And it's not because she's a messed up person, but because she puts that time for herself as a priority. I have always said that I think counseling is a good thing for people, even if they don't have issues to deal with...and yet, I've talked out of one side of my mouth while not putting the rubber to the road. I admire my friend and I'm ready to admit that I need some additional help to deal with all of this. Thanks, SS, for being a role model.

Changes

Here we are a few days after chemo and thought I'd do a brief update. Decided to update the hair style per my last post and tried out a Winlock girl, Michelle, who rocked it. She created a faux hawk style with red and copper for coloring. It's very bright in the sun! :) I'm digging it so far but it's very interesting to see the reactions of the commoners - not quite as much polite chitchat at the stores and what not. I feel like everyones watching me to see if I'm going to steal something wherever we are. It's semi-humorous but a little angering too. It definitely stands out more in the little town of Winlock than say in Portland.

I have been feeling pretty good after chemo. I sometimes think it would be nice to have a little sign to post around my neck that says "I've just been through chemo this week, be nice to me." I just would appreciate a little more understanding from the average unknowing person about why I'm moving a little slower or that a little extra kindnessy to everyone is an OK thing. I mean hell, I don't want like first of line privileges, but a little common decency and and some understanding would be great. And thats why I need the sign.

I continue to be a little fatigued and I can't sleep well due to the hot flashes. That part is taking a bit of a toll in my everyday interactions, where I can't muster up my normal friendliness. I'm just a little grouchy, dammit! But otherwise, the chemo was not nearly as scary as I thought it would be. The fact that they give you so many drugs to take to counteract the side effects before you even have a sign of any side effect is a much appreciated thing. I'm sure it would/could be a lot worse if it weren't for that pre-prescribing (which makes you wonder about the word "PREscribing.) We have been given a whole new battery of pills and my medicine drawer is getting out of hand! Seriously, I probably have over 20 prescription bottles from the last few months. I'm even using one of those weekly pill boxes to keep all the crap straight. (thank god for Brian filling it for me and keeping it all straight.)

I'm now wondering what the docs will say about my returning to work. Its hard to imagine working a full 40 hour week, due to the fatigue and just the brain drain of trying to help others and stepping outside of my own issues for a while. Maybe it'll be a good thing.

First day of chemo

Today was the first chemo appointment and my wallowing in fear and expecting worst case scenario worked! By "worked" I mean that I had no problems at all except the extreme fatigue I feel now. But fatigue is something I can handle without problem. Here's a breakdown of the day:

We showed up and started the education piece with the nurses where they told me all about the possible side effects of the drugs they would be injecting intravenously and how to deal with them. The real approach to all of these effects is to head them off at the pass before they get bad, so they loaded me up on a bunch of prescription pills to combat nausea, diarrhea, heart burn, anxiety, and so on. They also got my IV going and put in several of the anti-nausea and other drugs to combat the potential side effects first. They did a good job of simultaneously freaking me out (just confirming some of the fears I already had allowed - like definite loss of hair, high potential for nausea, etc) but also relaxing me by being informative and caring. Thie doctor stopped by very briefly - no real comment on that.

They then started the taxol first, whIch has the more immediate side effects so they started it with a very slow drip and watched me intensely. They increased the speed of the drip every fifteen minutes for about an hour and then left it at that final speed for about another three hours. I was very nervous and noticed I was creating psychological side effects where there were none (hypochondriac!) so I decided to busy myself with a little tv/movie watching which helped to alleviate that problem. (a HUGE thank you and shout out to the GLass and Tesarik clans who pitched in on an iPad for me and loaded it up with episodes of Smallville, which I totally geeked out on and LOVED today. Thanks guys; You rock!)

I had several hot flashes (hello menopause!) throughout and the first one or two freaked out the nurses a little since allergies and flushing can be caused from the chemo drugs. The nurses were again great in their sevice, bringing blankets, cake, beverages, fans, and whatever I needed. I also got a quilt that volunteers knit for the cancer patients. I felt a little guilty about it at first since I have so much great support and don't NEED a blanket for survival, but the nurses convinced me that all cancer patients are welcome to the quilts and I thought it would make a kind of neat momento of this experience. I chose a really cool blanket that I'll try to post some pictures of at a later date. I'm happy I took it now. It will be great in our new home and as a reminder of all of this experience - because soon this will all be behind me, right?!

Anyway, so then they started the carbo platin drug in the IV for a half an hour, and there was no problem. Brian had stayed with me through most of it and ran to get us some healthy sandwiches and then I convinced him that he could run chores while I watched Smallville, so he took off for a little bit. Overall, it was a fairly uneventful scenario other than it was the immensely dreaded "first day of chemo." I feel ok though and hope it continues that way. We were there for a total of 7.5 hours today! The drugs will take their biggest effect in 7-10 days and that's when I may notice some hair loss.

Speaking of hair loss, I'm thinking I'm gonna cut my hair short in the next few days and dye it some crazy color. I mean, why not? This is the one opportunity to do something wacky that won't be too permanent, and I have always wanted to do it anyway. So stay tuned on that front. Suggestions too of styles, colors, where to find cute scarves, hats, etc. Are welcome too!

As far as needs at the moment - we need healthy meals again, but only for the next few days. By healthy I mean low on dairy, lean meats, lots of organic produce and antioxidants (green and purple veggies and fruits). These are the requests of the doctors and nurses, but it's also an eating style I whole heartedly embrace too. I am requested to drink a TON of water and non-caffeinated and non-alcoholic beverages too. I hope my energy will return quickly and I'll be back in the kitchen soon. But in the meantime, Brian seems to get really crabby when I suggest he make dinner, so some help on this front would be welcomed.

Did I miss anything? Let me know if you have any questions about this experience. Thanks everyone for your help!

Anticipation, Part II

OK, getting real nervous right now. Two days to first chemo appointment. I had a great realization the other day that was profound (for me) but ultimately isn't making me feel too differently. The realization was that I am letting the chemo scare me more than I'm letting the cancer scare me - And that's just not right. It's the cancer that's life-threatening, not the chemo. While the chemo has lots of scary immediate side effects and toxicity, it's ultimately supposed to help me and I need to keep that in mind. The cancer just seems less scary because it has less immediacy. But, admittedly, I'm still scared. In fact, I wanted to put off the appointment an extra week the other day. But so far, I'm still keeping it the same day. I should probably do some more research so I can help with this damn fear.

Anticipation

I did it. I made the appointment for chemo and start my first session next Wednesday. What can be expected? I don't know. The first hour of the appointment will be talking about precautions and care of myself and what to expect. The other four hours consist of three hours doing one type of chemo (carbo platinum) and half an hour of taxol. They will attempt to do it intravenously and we've managed to schedule it on Brian's day off so he can be there with me.

I went to a doctor's appointment with the surgeon the other day, but she got called out last minute so I ended up seeing her partner instead. He thought everything looked ok from his pelvic exam and that my wound is healing well. I am to talk with them again after my first round of chemo and then we'll schedule a return to work date, but most likely it will be by the end of the month. My belly wound is completely closed up now, but has one heck of an ugly gash-type scar. I always wanna show it to people because I'm fascinated by how it looks, but I recognize that it may be uncomfortable for others if I start lifting my shirt in public. Haha

As far as how I'm feeling - I feel great right now. I am getting back to my normal activities and even doing a little planting of some flowers in pots on the deck. I still have lifting and torque restrictions...but I feel well enough to push those restrictions a bit here and there. Don't worry - nothing major - just happy to get back to life as "normal."

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?

Showing Character

I am finally home and it feels so good. I still am sore and have a large wound that we're working on healing. I am on blood thinners and potassium pills. I feel better and gain strength daily, but am reminded that I must take it slowly. The staples were taken out of my wound on Friday, but I have been too active and have reopened part of the wound. I must take a few steps backwards and just relegate myself to a chair or couch and let myself be served and not push myself too hard. I never knew how hard it would be to depend on someone else for everything - getting me a drink of water, helping me to stand up, and just grabbing things that are barely out of reach.

As I sit here, tired of watching movies and needing a break from books, I realize that I still know so little. I've had a hysterectomy; What does that mean to me? I'm about to enter menopause and I'll never have a period again - but what does that mean to my hormones? I have a cancer and most likely will need chemotherapy, but what does that look like? How will it effect me? Suddenly, I feel overwhelmed by how much I don't know.

My husband, lovely man that he is, felt compelled to point out the beginnings of a mustache to me the other day. Gee, thanks dear! And while it's kind of funny, it also strikes fear in my heart. Is this the start of needing to shave my upper lip and my beard? Will my body become pear-shaped and will I be prone to hot flashes? Will hormones make me a raving bitch?

I also come back to face the question in my first post about strength and fear. I continue to be told by others about how strong I am, and yet I feel this incredible fear for the next few steps. Chemotherapy has always sounded so scary, and yet I realize that I really just don't know much about the process. Maybe knowledge will take some of the fear away. I won't back down; that's not my style. I will admit fear.

They say that how you handle difficult situations is what really shows your character. That seems like a lot of pressure in this scenario. Of course I want to be strong and fearless and knowledgeable about my condition and never be known to complain or whine for my situation - that's admirable, right? But that seems like a tall order...and a little unrealistic too. Who has taught us that we must be all these things to be an admirable person? I want to portray all those characteristics and yet more importantly, I want to be real about my situation and honest in my emotions and communication, which may sometimes conflict.

The Surgery; An Unforgettable Affair

Laura and Pat came to visit the weekend before the surgery. They helped Brian and me to rototill the garden and come up with a plan for planting all the seedlings we started a few months ago. They plan on making me several meals worth of food that I'll be able to eat post-operatively to save us work and stress in the long-run. They also will stay and take care of the pets while I'm in surgery. Thank you so much for all the love and work you put into this, Laura and Pat. Your friendship is amazing.

Magnesium Citrate. Ick; Those are a couple of words you hope to never hear that you have to take. I have to clean out my system pre-op, so only clear liquids the day before and take magnesium citrate, which will have you close to the toilet for the rest of the day. Note to self: Next time, buy the cushiest toilet paper you can find to use in conjunction with the magnesium citrate. The eco-friendly toilet paper I buy (100% recycled!) is great for the environment, but not so good for massive amounts of usage.

Brian and I wake up early and head in for our 6:00 AM surgery check-in time. Brian is more worried than me. I'm still in shock. It's making me nervous that he's so concerned and that he's crying and trying to hide it from me. I am worried for him and don't want him to be alone for the whole day, but we manage to arrange a few family members to check in on him throughout the day.

Check-in happens and everything goes fairly smoothly. I meet with the lead anesthesiologist, who is extremely knowledgeable and has decided an epidural is the way to go for this surgery. She has me sit on the table...and that's all I remember until I wake up from surgery. Brian tells me he was brought in to the room around this point (I do vaguely remember him being there and saying some goodbyes) and that I was very enthusiastic about the skills of the anesthesiologist. Well, I guess that's good.

Coming out of surgery is such a weird experience. It's that weird place, kind of like I imagine pergatory to possibly be. You're coming out of a dream-state but never really sure which part is still the dream. There's glimpses of some real seeming things: heart machines, people in scrubs; But then there's the constant cloud of dreamy half-memories washing over you too. I look at the clock and am shocked to see it's 6:30 PM. Holy crap - that can't be good. Too tired to try and make sense of it all though.

Finally, around 8:00 PM, I get wheeled up to my room. Brian is there, Don, Barbara and Angie. They all clear out quickly, except Brian, who tells me what has happened. They tried to do the laproscopic surgery (which was a stab at hope), but found the mass to be cancerous. Dr. Steiner called in her colleague, Dr. Cappuccini, to assist with the surgery and they opened up the full belly. They took out the cancerous mass which was attached to the ovary and ended up taking both ovaries, the uterus, some fibroids, the omentum (fatty tissue that hangs over the organs), and some suspicious looking lymph nodes. Unfortunately, they nicked the vena cava in the process and a lot of blood was lost and had to be transfused - about 3 liters total. They brought in a couple of specialists, who happened to be next door, to also assist. Aiyiyi. Is that all? Now that lost time I'd been wondering about is starting to make sense. I am happy to be out of surgery, that I woke up on the other side of surgery, and am ready for sleep. Apparently no one else got that memo. I am woken up every hour to be tested for blood sugar, but then there's thousands of other nurses in and out of the room waking me up for various blood tests, changing of fluids, poking, prodding, and so on. So tired.

I describe my pain that next day as a 5 - mid-level. They want me to try and sit up, maybe walk to another chair for a little while. My body rebels with other thoughts of sitting nice and comfy right where it is. We force it into submission and sit on the edge of the bed, but that's as far as I can make it. I'm out of breath. My pulse is unnaturally high, I have a fever, and there's lots of other issues going on that can't seem to brought under control. I think to myself that I've just had a hell of a huge surgery - why shouldn't my body be rebelling against it all?

At this point that day seems like a dream, but I remember a lot of concern from my doctor and the nurses about how I'm doing. Finally, my doctor comes into the room, trembling and stumbling over her words. She's been concerned about how I've been doing and was talking to another doctor about it when he mentions that it sounds like something might have been left inside of me - a sponge, maybe. She is very concerned and orders an x-ray. Guess what? X-ray shows that there is a sponge still in my belly. Time to go back in to surgery. Less than two hours later, around 4:00 PM on 5/19/10, I'm back under the knife. They find some gauze that had been left inside and take it out. It's a quick surgery and I'm waking up by 6:00. I wake up with a smile. I feel 100% better. I am trying to figure out which part is real and which part is dream again, but I know that the whole air around me feels happier, better, more positive. I can rest.

The nurses have other ideas though. Poking, prodding, etc. My doctor, out of concern, has told the other on-call doctors to check in on me. They each have their own idea of what is wrong with me. The internal medicine doctor thinks that I need more fluids and vitamin K. OK, hook her up. The cariologist thinks I might need some potassium and something else - ok, hook her up. Several other doctors have their say so and I'm hooked up to more IVs. I've lost count at this point. Their over-concern for their screw up is turning me into a pumphouse of fluids. I have 4 IVs, and each of those have several things hooked up to them - I estimate that I have 18 lines of various fluids being pumped at one time, but that seems like it has to be an over-exaggeration. They can't possibly have had me hooked up to that many things; Could they?

That night they wheel me down for a CT scan. I'm incredulous. I just got out of surgery and you want to do what? Well, hell. The scan shows there might be a clot in one of my lungs. One more thing to be poked and prodded over.

I should take a second and talk about the nurses. There were a huge variety of nurses that dealt with my care, but overall I had some of the most incredible care I could imagine. Brandi, the super star of all nurses, discussed Buffy the Vampire Slayer with me - she brought in a movie for me to watch. She called from home to see how my health was because she was concerned about all the tests I'd been going through. That was/is amazing. I have a breathing device to help with my lung capacity that we call my plastic peace pipe. She makes me laugh and she is attentive to the nth degree. I feel relief under her care.

I quickly realize that my modesty has gone out the door. The doctors are great about making sure my chest is covered during examination, but there seems to be no regard for the fact that they keep hitching my gown above my waist to look at my belly suture. I don't really care at this point, but I find it humorous.

Nausea is a common experience while I'm in the hospital. Unfortunately the pain medicine makes the nausea even worse for about 5 - 10 minutes before getting better. I get so use to the feeling without the actual act of vomit that I think it's never going to happen...and of course, that's when it finally strikes. Same feeling but I ignore it, and then it happens. And the last little shred of modesty I had goes out the window. I have now done all the most embarrassing things I can think of (I've saved you a few gory details) and have had to be waited upon and cleaned up by other people. They treat me with the utmost respect and humility possible and I am grateful to them for making a humiliating experience more bearable.

Meeting Steiner

Originally I was scheduled for an appointment on Friday - May 14th with a normal gynecologist. I was not excited about waiting an extra day or two. However, my doctor also sent my pathology report to the specialist at the same time (a gynecological oncologist) who ended up calling and wanting to bypass the gynecologist for a visit straight to her (Dr. Norma Steiner) on Wednesday. Thank God.

Brian and I went in to the appointment and she confirmed being able to feel the mass through a vaginal exam. Next step: Surgery. Immediately. Next Tuesday. (Remember that blog post entitled "Oh, Fuck!") We're unsure what we're dealing with exactly, but the best way to know is to get in there, take out this mass, take a look around at the ovaries, uterus, and other things and take out anything that looks suspicious. The mass itself appears to be attached to one of the ovaries and to have twisted the ovary behind itself and be located closer to the intestine than normal. I think at this point is when the words "carcinoma sarcoma" are mentioned as a possibility and that's not good. So, my youngish doctor (she's a year younger than me!) schedules surgery for next Tuesday and tells me to plan taking at least 6 - 8 weeks off work starting immediately. I ask how many times she's performed this type of surgery and she says, very confidently: "Hundreds." I think to myself that I wish she had said "thousands."

I always dreamed of "having" to take work off for an extended period of time, but it didn't quite look like this. I pictured margaritas on a sunny deck, working in the yard and on my tan, getting buff from my exertions in the yard...not a sliced open belly and recovering abs, requiring no lifting, pushing or pulling of any weight. That ruins all the fun of having this much time off work. Damn it!

Oh Fuck.

Ha. I can't really imagine a name any more appropriate than that. Oh Fuck. On my drive home from work today, after hearing from my doctor that I have a rather large 10x10 centimeter mass in my belly, (oh, and it's bad news...it might be ovarian cancer) I kept thinking various profanities. Shit. Fuck. Well, mostly just those two profanities over and over again. I thought about posting something ominous like that to facebook, but that just invites questions and right now I just need to process.

I also realized that I like to be strong. I don't like to show weakness. I hate crying in front of other people. People have always told me it's ok to cry, but that's not really what society says. Not that society matters much at this point, but it's been ingrained into my head and I have always gotten more approval and admiration for my strengths than my weakness. I'm betting that's true for most of us. Though who's to say that crying is a strength or a weakness? Why does either label have to be attached?

What exactly am I writing about today? Let's just say that midnight is near at hand and that my mind is racing. I've always journaled in the past in similar circumstances and it's helped, so now seems appropriate to take this one step further. Why not let the whole world read what is in my brain, if they care to take a peek? I've told myself no holds barred on this damn blog. Can I do it? If you don't like what you read, then please stop. Don't talk to me about insensitivity or legalities - it's time for me to be completely honest. My life is on the line.

I suppose that seems a bit dramatic. I have had a penchant for drama in my past. (what a beautiful word, penchant.) But seriously, I am unsure what kind of turmoil I am potentially facing in the near future, and I'm scared. I'm strong and I'm freaked the hell out. Is it possible to have fear and strength? It sure seems possible to me at this moment. Ultimately I feel pretty sure that I'll be OK in the end, but what does that really mean? What kind of hell stands in between me and "the end?" When I had thyroid cancer (a much less scary cancer in that only like 3% of people ever die from it), it was much easier to be cheerful and make jokes. I'm sure I'll do that again this time around too, but am I hiding a fragility under those jokes? Could my face crumble at any second and the soft interior part that is afraid to give up my incredibly happy and blessed life become exposed? Yes, I think it could. I think it's already happening.

That feels like it should've been the end of this particular rambling blog post, and yet my mind says it needs me to keep going. So on we blog. Are you still following along? "Can you read my mind? Can you picture the things I'm thinking of?" (10 points to whoever guesses that movie quote!

I hate most of all that I can feel this thing inside of me. I'm constantly aware of it's push distending my belly of my sensitivity to touch in that area, and most of all of it's rumblings, gurglings, and the pain. My god, that pain. It brings me to my knees. I want to moan - I sometimes do. But the pain is fairly brief thankfully. Tell me this - How can you have that kind of intense pain and yet just a couple of ibuprofen make it better? While I'm in the pain, it seems like only morphine is going to be capable of making it subside. My insides are twisting and pulling and want me to bend to their will. But no...two (ok, four) little aspirin that won't even cure what ails most people seems to make everything better. How strange is that?

So, I'll summarize the first few steps of the journey since that's what I'm about to embark upon - a forced journey. Really I suppose it's just a chapter in an already quite large and amazing journey, but we'll save those stories for later. Had extremely intense pains on 4/11/10, took some ibuprofen, started my period. Didn't think anything more about it. About two weeks ago, I noticed some persistent odd discomfort in the belly, but didn't think much about it. Saturday night went out and noticed that I was having problems sucking in my belly and that I got full supremely quick that night...and I didn't feel like drinking. Now that's odd. Sunday morning, had a great morning with Brian, we decided to take a walk. I realized as I was walking down our driveway that the pain was getting bad, the one step outside our driveway I thought to myself "this is going to be a mistake", but pushed on. (I am stubborn too.) Made it about two blocks and had to turn around. Wasn't sure I would make it back. Made it to the recliner, which made things worse. Fell to the ground in agony. Got up and went to the bed. Brian bought me ibuprofen. I fell asleep. I continued to take pills as Brian directed to make sure that pain did NOT return, and it didn't, but I was scared. I had learned to be much more sensitive of the belly at that point.

I called in sick to work the next day 5/10 and made an immediate appointment with Dr. Macheria at Kaiser. I had a slight fever -99- and my pulse was a little high. She did a pap smear but couldn't find the cervix. Did a vaginal exam, said the cervix was very high. She felt my stomach, I winced in pain a couple of times. She thumped my stomach and said it sounded dull. She also worried about my distended belly. Silly me - I think it's part of my constant-potbelly-since-birth. Oh no, it's worse. She refers me to a CT scan - I schedule it immediately - the next day.

5/11/10 Go to CT scan. Get really annoying guy who keeps making jokes and I just want to get the damn thing over with. Makes me drink barium two hours before going in - I do, it tastes icky. I then get the pains really bad again one hour later. I decide I can't drive myself and Brian has to call in to work in order to get me to the appointment safely. He does with no complaints. Damn, my man is a saint. (You know what he told me before falling asleep tonight? He said he'd rather be going through this with me than be doing anything else. Isn't that the damn sweetest thing you've ever heard? It brings tears to my eyes.) Anyway, go through the CT exam and then leave. Decide to go to work for 1/2 a day - I know, I'm crazy, but I don't have much sick leave! Check my phone at 4:45 and Dr. Macharia has just left me a message to call her back. I call back, get ahold of her and she says that I have a 10x10centimeter mass in my belly. That means bad news. She says it's likely that it's ovarian cancer. And that there's fluid in my belly causing it to be distended (ha! It wasn't just a potbelly from bad genetics and beer!) She has a call in for a referral to a gyno with an "urgent" status. And that's where we are. I'm waiting to hear about an appointment.

I could conjecture on what next steps are, but it's probably best to just wait. We know nothing about this "thing." No one knows if it is cancer for sure. It seems pretty damn likely, but strange things happen all the time.

And that's what causes me to be up at midnight typing a first entry into a blog, debating about fear and strength. Oh Fuck. But know what? I at least feel a little sleepy now.