Tuesday, December 30, 2008

Ode to Trader Joes

I interrupt regular cancer-based programming to say that I was finally able to get over to Richmond's new Trader Joe's market today. Yippee! It has been open for a while, and I was one of those people writing to their website begging for a store for the last couple of years, but the last couple months have been a bit hectic and I didn;t make the grand opening.

As we pulled up I pretended I was running toward the store in slo-mo through a field of daisies with my arms outstretched while my mom hummed the "Chariots of Fire" theme song. It was wonderful. I got some old faves and lots of new stuff to try out, especially with an eye toward healthier fare and lots of anti-oxidants. I feel complete!

We did drop by the doctor's for a quick stitch removal. My port catheter was throwing a stitch out of my neck, but I couldn't tell if it was wire of some kind or was okay, so thought it best to drop by the doc before New Year's hit and I ended up in the ER if it didn't get better. It was a quick if not painless procedure, and the little infected spot should heal up super fast. The best thing is I feel better for having addressed it quickly. I'm learning to take care of myself when I need it, not a few days later.

While at TJs we did get some champagne, and yes I do plan on having a glass, because my expectations for 2009 are high. I know it will be challenging, but I can meet those challenges nad best whatever I need to on my road to recovery/enlightenment/learning. Ciao for now!

Monday, December 29, 2008

Plans for the Week

Well my mom arrives tonight, so I will pick her up from the airport and then we are in for a busy week. We plan on working on the vision board, probably getting a plan and meals laid out for healthy alternatives that can be on hand all the time that are easy to prepare, even when cooking just for one when Scott is working. We may look into other alternatives as well, like macrobiotics and maybe some juicing. I think getting some "superfoods" as a part of my regular intake is a good idea, and wheatgrass isn't really that bad...

I hope we can get the house cleaned too (not that she's coming for free labor). I've been working on a few rooms, but I do tend to tire very quickly these days, which is frustrating. Should you really have to sweat when cleaning a sink? Seriously! I also have a burning desire to go through ever single closet and cupboard and get rid of junk, probably a reaction to wanting to clean everything out of my body that is cluttering it up (I'm talking to you, tumor). I already gathered all my long hair stuff together to give away since I have decided going back to long is not really an option, between my age and my newfound freedom from hair products!

The good news (for me) is she will be here for my chemo next Monday so she can see what the layout is and how the whole setup works, which I think will help her understand what goes on. In the meantime I'm working on gathering all my medical data together so whe can take it back to UCI for me for the second opinion/review I discussed awhile back. I don't think a doctor necessarily needs to examine me, since all the important data has been captured on tests, but a review of treatment options is a good idea.

Sunday, December 28, 2008

Screw Statistics

So yesterday was research day, and it left me in a pretty down mood, I must say. It seems that with all of my little foibles and twists I end up in the "0-5% survival rate after five years" category. I did find a case of a woman who had her cancer, including that which had spread to her lungs, spontaneously regress, so she is my new hero, but the German, Chinese and Czech reports all were in accord on the above numbers. Well, screw statistics, I am more than a number.

I want everyone to join me as we have a huge pep rally for 5% this weekend. To come to the imaginary pep rally, all you have to do is picture yourself and your friends filling the bleachers at a football stadium, hear the big bass drums beating, feel the chill on your cheeks and watch your breath as you cheer "Come on, 5%!" Pick whatever colors you choose, just follow along with the cheerleaders and 5% can do miraculous things.

I think part of what is getting to me, and perhaps this is a delayed reaction to getting the news, is that from now on this is me, this is how I will be identified, linked with cancer forever. I feel like I'm not just me anymore, I now have this thing that comes with me, that is always in the room, always part of the conversation, even when its not. Maybe its just because its on my mind, I hope everyone else doesn't feel this way around me, because its not a burden I want anyone else to have to bear.

Saturday, December 27, 2008

A Bit Adrift

So I have no chemo or oncologist appointment until January 5th, and it's odd to say I feel a bit adrift. Things have been going at such a breakneck pace, and here are two weeks with virtually nothing in the way of doctors at all. We are switching from Thursday chemo to Mondays so I can see the oncologist the same day/visit, so I have no appointments other than the dermatologist next week until after the New Year. Full disclosure: The dermatologist will be biopsying what appears to be a basal cell carcinoma on my chin, so I may have to have a tiny bit of plastic surgery there. It can take a year to get a derm appointment in Richmond for some reason, so its a good thing I got this rash since I was able to get a new dermatologist within a day of surgery, otherwise who knows how big the patch could have gotten before anyone could see me.

It seems that I have been guided along so far and now have this time that seems very long stretching out in front of me. I plan on working on my vision board and of course am constantly striving to eat as healthly as possible and get some exercise in each day, but it seems that I should be reaching further. People remind me to just relax and work on healing and rebuilding my strength, after all that is the purpose of cycling through chemo, however I feel like something more should be happening.

Scott has encouraged me to look into cancer support groups so that I can connect with others who are going through what I am locally. So many have offered wisdom and support of their experiences, and I know there is always more to learn. For example a resource book Scott recently got me mentions that day four after chemo is typically the worst. I had experienced this, but was confused because it seems counterintuitive. Knowing it's common makes coping easier and its the type of info you wish you knew up front. I know there are many more pearls out there for the asking, I just need to find my way to them. I think that will be this weekend's task: find people like me, near me, and get connected.

Friday, December 26, 2008

Chasing Goldilocks

After feeling horrible for a couple of days I was back on my feet yesterday, and had a "Goldilocks" moment in the late evening. Everything was just right! I had had a great day with Scott and the dogs before climbing into a clean set of sheets with a freshly washed comforter. I was clean and cozy, not hungry, not thirsty, not cold, not hot, just perfect. Snuggling under the covers felt like the very best thing ever! I love moments like those. Even things you normally worry about are either marked on a list so you don't have to think of them or not pressing enough to invade your thoughts. You can take a deep breath and just relax 100%.

I think trying to have moments like that is a worthwhile pursuit, however trying too hard can actually have the opposite effect and chase them away. If you try too hard for things to be perfection it seems that there will always be something lacking. They just come naturally. Like having the perfect hour with the perfect friend at the perfect bookstore...for that moment. Trying to re-create it may never work, you just have to enjoy it as it comes.

And not working at other things and having only great moments will leave no room to appreciate them. Like being the Cheshire Cat you may just become a big grin. Having some adversity makes the great moments even better, so while I'm not glad I was sick, I was certainly glad to enjoy my moment of glory last night, even though it was just for me.

Thursday, December 25, 2008

Merry Christmas, Happy Yule, etc.

I haven't posted for a couple of days because I've been quite unwell (read: whining and wailing like a banshee or starring glassy-eyed at the wall) but am feeling much better now. Apparently chemo/drugs/diarrhea/constipation concerns are a fairly delicate balancing act and getting depleted of certain things (potassium, in this case) can be a real bummer. I don't want to make this post about poop, but it can play a big part in health and wellness! Enough said on that.

After taking another very appreciated shower this morning and being able to hold down a good breakfast and my meds, Scott and I plan on relaxing for most of today and taking half of the dogs for a walk. We'll take two today and the other two tomorrow. Trying to take four at once is just folly, and we won't be going down that road! I appreaciate the suggestions for creativity and will be looking up the author Kathy suggested as well as calling Yvonne after her return from her Christmas holiday to start a creativity night. I think it sounds like fun, and I can already think of a few others who will want to join in locally.

I was sorry to miss some plans I was looking forward to over the past couple of days, but I have to remember I can't do it all and take my time. just because I feel alright doesn't mean I have the same stamina as before. Understanding friends seem to "get it" even if I don't! I hope to post a bit ore later, but wanted to check in since it had been awhile. I hope everyone has a wonderful holiday surrounded by the people they love the most!

Monday, December 22, 2008

Random Cancer Musings

I've been thinking about cancer alot lately, what a surprise, and have come up with a couple items I think need a good look. While the arrival of the cancer could be completely random, it seems that there are things we do/say/think that can keep junk building up inside of us on many levels and create bad stuff, like tumors for example. While I may never find out exactly why cancer has come to me, this gives me the perfect opportunity to try and get some of the angst/anger/rage/sadness out of me, perhaps, so I am going to try my new two-pronged approach to cancer treatment.

Basically my idea of the two-pronged approach is coming at this from both the masculine and feminine sides. The masculine is pretty well represented by modern cancer treatment: attack, kill, drive out - and we are doing a great job of that with the chemo, hormones and immunotherapy in a warelike manner. The feminine side needs attention too, though. This is the question: Why are you (cancer) here and what can you teach me? If I can learn your lesson, will you move along and let me live happily with my newfound knowledge? Will you never have to visit again, years down the road, because I missed the "message" the first time around? I think this deserves some attention. It probably sounds a bit woo woo but I don't think having bad stuff inside and not fully clearing it out, on physical, emotional and/or spiritual levels will ever allow a full healing, so I think I'm going to have to dig a bit here.

I am starting by trying to free some creativity, as fibroids (especially the big bad baby that started this whole thing) are supposed to be signs of blocked creativity and unborn ideas, and this blog is actually a help. I'm also working on visualizations for freeing the cancer from my lungs by inhaling deep cleansing breaths and releasing the cancer cells (or stormtroopers, as I think of them - the tumor is the death star, for all you Star Wars fans) harmlessly into the air, where they evaporate into light and then nothingness. I've received some excellent book recommendations (throught this blog, btw - thank you!) and have some additional material to use for addressing body and emotional issues and cancer in particular, but as usual always welcome recommendations.

I think many issues that as a younger person seemed like a "big deal" are falling away now, but I am still trying to acknowledge them and then release them, especially viewed from my new perspective, so maybe this will move along well, and if this post is a bit random in nature I apologize, but I hope my basic thought process gets conveyed on a level that makes sense. more on practical matters later!

Sunday, December 21, 2008

E-MAIL Technical Alert!!

Hi Blog readers, This message is just a quick post to say that if you have written to me at my comcast.net or verizon.net addresses (we're switching, slowly) - and I have not responded - that means I did not receive your latest e-mail! I have encountered some issues over the last couple of days with non-received e-mail and want you to know that I am not ignoring you! As of now I have responded to all e-mails received (not yet all snail mails, though) so please, re-send or send to the anguishedbride@yahoo.com address since that one seems to be functioning fine. Sorry for any inconvenience! Over and out.

Saturday, December 20, 2008

Chores, Chores, Chores

Well I'm still trying to get my Christmas cards out, but I have been getting so many great e-mails, snail mails and phone calls I barely have time to think! I also took on the running of a large writing contest for published authors sometime before I was diagnosed, and it is keeping me hopping as well, since entries are open for another couple of weeks. I think it's doing me good though, to stay focused and productive, especially since I haven't worked since the surgery. it keeps me from moping around and feeling sorry for myself, especially when Scott is at work.

I'm not sure if it's the shot yesterday or the chemo the day before (or the combo), but I have had a couple rounds of nausea (more like vertigo, really) yesterday evening and today. They don't last long and my "emergency" nausea medication the Dr. prescribed seems to do the trick pretty quickly, they just tend to come on pretty quickly, so I will want to keep that monitored when back out and about.

I also, in the spirit of improved diet, have decided, one shelf at a time, to organize my pantry, and am finding things that I need to eat and things that no one should eat! It's helping me see where we stand and I'm finding some ideas (quinoa, barley, etc.) right on my shelves that will work for the new "back to basics" ingredients plan I want to try and stick with. I plan on avoiding all processed foods, High Fructose Corn Syrup, artificial sweeteners, preservatives and ingredients I cannot pronounce, transfats, etc. I've been doing a pretty good job of adding loads of fresh fruit, since when I get queasy it's my "go to" thing, fruit juices (need to be careful there, but good for quick energy when slumping) and greens, but I have to concentrate on adding proteins as well, which have not appealed to me quite so much lately. Meat has pretty much lost it's lustre, with the exception of some fish, and beans are good but require a bit of prep, so I will have to pay attention to proteins to help my body reboot from treatment.

Also because of changed tastes in my mouth due to chemo some things I "know" the flavor of are not the same at all anymore, so I need to do some experimenting with herbs and spices to find things to cut through the metallic kind of taste even water seems to deliver. It's not horrible, I don;t think of it all the time or anything, but it is there and to stay on the right track I will need to address flavors and what works more deliberately. Well, back to the pantry, those shelves aren't cleaning themselves....

Friday, December 19, 2008

Much Ado About Nothing (to coin a phrase)

Well, yesterday was a lot of worry over nothing. I had NO reaction to the new drug at all, so it looks like its a go for me. I feel silly for worrying. It seems that when they make a big deal over something it turns out to be easy, but when they tell me something is simple (the port catheter comes to mind) it hurts like &@*$%. I did have very low potassium and hemoglobin levels yesterday, so had to get a special shot to help build red blood cells (again, told me it would really sting, but no biggie at all).

Today I go back to get another shot, this one is to encourage my blood marrow to produce more white blood cells to help fight infections. I have to wait 24 hours after last chemo to get it, but I should be able to just run up and out in a few minutes. The very best news is that next week in my cycle is NO CHEMO! I get Christmas week off to give my body a chance to regroup, and it's great to think I have no doctor's appointment till New Year's Eve (and thats just the dermatologist).

I will be turning my attention to day-to-day and coping stuff next week, figuring out good dietary changes (many of which I've already started, more on that tommorrow) exercise (got signed off on walking by my surgeon today) and alternative and complementary therapies, vitamins, etc. Any readers who have suggestions, recipes or ideas are encouraged to write, either by commenting on the blog or via my e-mail at anguishedbride@yahoo.com. By the way the e-mail address is no reflection on my relationship, but rather a character I created a few years ago for a role-playing game ;-)

Thursday, December 18, 2008

Long Day Today

So today is the day I get my second chemo, and I am getting that other drug, the one I heard is kind of icky. I'm trying not to get freaked out so I can just relax into it and let it heal me up, but the nurses were acting a bit gunshy of it when they read my chart last week, so I am a bit apprehensive. I'm sure everything will be okay.

I also want to talk to them about my stomach. It's been very tender, feeling alot like it did right before the big surgery. Super sore to the touch and sensitive to everything, so I hope whats left of the the tumor in there is not acting up. Again I'm sure we can get to the bottom of things, and worst case I have a follow-up appointment with the surgon tommorrow, so either way we will address things as needed. I will probably be gone most of the day, as it sounds like I have a good 5 hour appointment ahead of me so I'm taking a lunch and lots of entertainment (to total of less than 10 pounds, of course). More this evening, if I can stay awake once I get home!

Tuesday, December 16, 2008

Hair Today...

So I just got back from the salon where I had a pedicure, eyebrow waxing and haircut, and I can't believe I was worried about getting my hair cut. It's super short but looks really cute, plus it took no time at all to finish and style. I decided that since I was told I'd be losing my hair from the chemo it would be a good thing to just get it cut off ahead of time, so there is less trauma involved psychologically, but it sure turned out cute! I think I actually look younger (never a bad thing) and it will definitely be easier to care for. I'm fortunate to have enough natural body to get some lift, but I have to admit now I'm itching to color it (which I can't while having chemo) but the time will come where I can be blonde or red again!

It's nice to worry about some frivolous concerns for a bit, but keeping up my appearance is important too, I think. If I feel good I can put more positive energy into getting better and feel like part of the "real world" instead of like I'm shut away. I'm looking forward to getting back to work and having normal conversations and laughing about day-to-day stuff, so there is something to be said for normalcy (imagine me saying that...).

Monday, December 15, 2008

Practical Chemo Concerns

It had never occurred to me before, but when you are in chemo you are not only prone to infection but actually are toxic to others for the first 48 hours after each treatment. I have to flush the toilet twice, wash my hands constantly and avoid bodily fluid exchange with others for the first 48 hours after each treatment for their protection, not just my own. These are things you never think about until they impinge on your lifestyle, and I feel a bit like Ned and Chuck on Pushing Daisies, for anyone that watches that show. It's a good thing my husband likes to hug, and that is safe enough under any circumstances.

Of course there are other issues, like sense of taste changing wildly. They suggest using plastic utensils, so we are getting a set I can wash seperately but are sturdy enough not to have to be thrown out after each use. They also say I need to segregate my towels and wash them seperately as well. We talked about getting a new set in poison green or red, but will probably just stick with the tan ones we already have, I just need to remember to do them in a different load in hot water after chemo days.

Much attention is given to mouth health in the literature - brushing, rinsing and avoiding bad tastes. My understanding is that chemo is delivered through the blood and therefore affects three main areas of the body: blood (obviously, and where my bad cells are being delivered), gastrointestinal (let's hope I can avoid blogging about the particulars there, although the mouth and taste stuff is related to this) and hair. The hair is pretty obvious, since so many people lose theirs during treatment. They warn me that I will probably not be an exception, but I'll tell you about my plans for that tommorrow. They have provided all sorts of numbers to call and hints to get through it, but I know I'm just at the start, so I'm trying to learn as much as I can up front. It's important to remember the chemo drugs are my friends, I need to allow them to work with me, since they carry the power to kill the bad cells. I think keeping that outlook will help ease the symptoms as well as allow the drugs to work to the fullest advantage, instead of thinking of them as another type of invader. I will do my best to relax into these things and take advantage of all alternative, complementary, visual, spiritual and medical options that can help. Thanks for reading!

Sunday, December 14, 2008

Outpouring of Support

I have been amazed and quite frankly humbled by the support I have been getting from people all over. People I have not spoken to in ages, people who barely or don't know me at all, people I have loved all my life. It touches me so deeply that I cannot express in words how much it means. You all make me want to be a better person. I can be a bit cynical and standoffish I know, have been trying to protect myself emotionally for the better part of my life, but I feel it melting away as love flows in. Perhaps this is the lesson I am supposed to learn from this experience and I have only you to thank for the learning. I will continue to wrap myself up in your warm wishes and prayers to help heal, and I know it will work. How can it not, with so many wonderful thoughts flowing my way? So now I'm crying...

Starting Chemo

I realize that the first time I saw the oncologist was Monday, Dec 8th, then the port was almost immediately installed on Wednesday, Dec 10th but we are already on to my first chemo treatment on Thursday, Dec 11th. Due to the lung thing everyone agrees there is no time to waste, and Scott and I sit firmly in that camp as well. They have decided to start me on two drugs, but for this first time I will only get one. This is good news, since all the nurses seem a bit spooked by the second drug. It seems there have been some issues with it, but I won't worry about it until next Thursday (18th) when I get that one. For now walking into the cancer center gets me a bit freaked out at first, but with Scott's steady support I get it together and deal.

It's actually quite nice, with each person having a private "suite", a little room off the main floor with a sliding door, curtains, your own magazines, lounge chair, visitor's chair and TV. you can bring a laptop, talk on the cell phone, etc. without bugging everyone around you and the medication gets delivered right through the port, so it's fairly hands-free. The downside is the wait - first step is labs, to make sure all blood levels are okay, then they weigh you so that the drug is administered in the correct dose, presumably. At that point orders go down to the pharmacy for your exact cocktail, which takes about an hour. Delivery of the drug requires a quick flush with saline through the port, then the drugs (one at a time). My first drug is a fast one and I can get it dripped through in 30 minutes, but next week they go slow with the second drug, so I could be there 5-6 hours. This is followed by another quick saline flush, then we're ready to leave. I was planning on driving myself to these appointments, especially since its so close to home, but because they load me up with oral meds prior to the treatment (most notably Benadryl, an almost guaranteed nap for me) it looks like I will need a ride to and from each time.

They have me on a 3 week cycle. I get treatment on Day 1, treatment on Day 8, then a week off to rebuild before starting on Day 1 again. Each visit requires labs and I will start seeing the oncologist prior to each treatment as well on Jan 5th (when I switch to Mondays), so that adds time also. I am to get a CT scan approximately every two months to check progress (yummy - barium!). So this is the schedule I am adjusting to, but a few days this weekend without doctors has been bliss! (Now if only I could get in the shower...)

Installation of a Port Catheter

This post may be TMI (too much information) for some, but I found the whole thing pretty interesting and something I was unfamiliar with. In order not to turn me into a perma-pincushion, and because I have crummy veins according to the health care professionals, the doctors have installed a port catheter. Essentially this is a procedure where they cut a hole in my skin over my second rib (right near the center of my chest and just below the collarbone), run a wire through my aorta toward my heart and up my neck followed by guiding in a tube that will always be open and in the vein. This connects to the port, a large button-type device that is stitched in under the skin and can stay in for years, as long as its flushed with saline every 4-6 weeks. This works by giving them a vein for drawing lab work and administering medication (primarily chemotherapy) without a huge production each time, although they do still have to pierce the skin to get into the port. I happen to have a two-port catheter, so they will trade off as I get chemo week to week. Bottom line: this was a "small" procedure that is to me a big deal, and hurts almost as bad as the original surgery. I still have one more day before I can shower (sponge baths work, but man do I feel gross) so Monday I will be up early to bathe, trust me.

Saturday, December 13, 2008

The Gynecological Oncologist

Monday December 8th and we're off to talk to the oncologist. Fortunately she keeps office hours at the satellite branch of MCV only a few miles from home and I was able to have the CT scan she ordered there as well on Friday Dec 5th, so we should have all the info we need to figure out how to fix me. She's perky, well-informed and talkative, traits the surgeons had mentioned and some of the reasons I chose her when offered a choice of doctors. Scott and I had already discussed as much as we could and decided that the most aggressive approach would be our choice. My first priority was actually getting the rest of the tumor out since the idea of the necrotic flesh sitting around inside my gut creeps my out badly.

The news was worse than anticipated (once again) as she tells me the cancer type I have is further categorized and I have the High-Grade type, a very aggressive cancer that is bloodbourne and has already spread into my lungs. She says the smoking played no part in this, so at least I don't have to feel guilty about that at this very moment, but that we have to nip the "too numerous to count" spots in my lungs in the bud before we can go back in for surgery and risk infection. She talks about hormone therapy, surgery (already mentioned) and chemotherapy options, and we decide that a two-pronged approach is the way to go, both hormone therapy (started that day) and chemotherapy (started Dec 11th). We also want to move fast, since every minute its going around in my bloodstream (which is just icky on many levels). After well over an hour I meet her nurse practitioner and get another string of appointments made, all while scared out of my mind. Less than a week ago I was just going to have some staples removed, and it's almost overwhelming me. I smile, but I'm screaming inside. Scott is stoic and supportive, and I worry about him holding too much in.

In regard to a second opinion, I feel that the team we have is good, large enough for varied approaches and we needed to take quick action, but of course I want to send out the records for at least a review by another facility and group of doctors. We just felt it was important to stem the lung thing at the first opportunity. My diagnosis is officially "cautiously optimistic" which means, to me, that I am not going anywhere. I'm not in denial, I just have too much to do to sit around thinking about dying and being all "woe is me". Basically my cancer and its sub-groups are so rare that they really don't have a roadmap for it so we are hitting it with everything since as Dr. B (oncologist) says I'm young, healthy, have a good heart and low blood pressure, so we'll be as aggressive as we can.

The Diagnosis (Dum dum dum DUM)

So on December 2nd Scott and I showed up at the doctor's office downtown for removal of my staples, a pretty standard procedure that was timed perfectly, since they were starting to itch. I had an appointment with Dr. Hull, one of the other surgeons on the team, and was surprised to see Dr. O there when I arrived. Of course with my being clueless it didn't set off any alarms, she said she had a bit of time and had popped over from the hospital to see me. Dr. Hull joined us and the two of them and a nurse proceeded to remove the staples, effectively ending my reign as Franken-tummy. Once the staples were out they broke the news. While the fibroid was not cancerous they had finished the lab work on the rest of the tissue and found that I had a very rare cancer of the uterus which was most likely the cause of much of the necrotic tissue and even the production of prolactin.

It's called ENDOMETRIAL STROMAL CELL SARCOMA and due to its rarity was causing quite a stir around MCV, one of the best teaching hospitals around (fortunately for me). I was told that they had a cross-functional team working on it for me and that I was the topic of their Wednesday conference (later I learned this is called Tumor Board by the docs). They also said they would be writing a paper, especially as relates to the prolactin generation by the tumor due to its rarity. While I realize this puts lots of attention and good care on me, I have to say there are other ways I would prefer to garner attention and minor "fame".

As you can imagine this took a few minutes to sink in. Scott and I had anticipated dropping by for a quick staple removal then maybe some lunch. The next thing you know I'm crying like a baby and getting hugs from the doctors (great to have an all-woman team, seriously). They wrote down the name of the cancer and we discussed options, both in MCV's system and outside. Scott and I decided that I would see one of the Gynecological Oncologists (say that three times fast) at MCV to keep things rolling, especially in light of the multi-functional team and huge group of oncologists, hematologists and OB/GYNs on staff. That's alot of good heads to have together and keep in mind part of this thing is still inside me since they had to get out of surgery and leave some behind. I feel like I'm part zombie, with dead flesh inside (ick!). Of course my mind went toward alternative medicine as well, but in the case of cancer I really want a Terminator approach. I am of course considering complementary medicine now (more on that later) but kill what's in me now, damn it! I got an appointment for the next week with the oncologist, where more good news followed...


All the way down to the hospital for surgery I felt every bump in the road and knew it was coming just in time. I was ready to go, and in spite of trying to avoid doctors whenever possible, I knew I needed to go and was happy to finally have some resolution to all the crap that had been building up.

Best thing ever: my surgical team was all women. My med student, all the surgeons, the anaesthesiologist, all the nurses....except one guy, who snuck into the room after I was already under the influence of sedatives. The last thing I remember was pointing at him and asking what he was doing there since he was a man. He said he was the anaesthesiologist's assistant and promised to stand at the back.

Apparently surgery was quite grueling and I'm glad I slept through all the excitement. Scott said that he didn't see me again till 7:30 that night, an absence of far more hours than anticipated. I had to have a transfusion of 4 pints of whole blood, a bunch of plasma and some platelets and Dr. O said it was the grossest thing she'd ever seen inside my gut (I have known her a long time). The fibroid had basically eaten away my uterus from inside the lining, taking over its blood supply and then not long before surgery it burst, throwing necrotic, dead tissue throughout my abdomen area. It also affected my appendix, which they removed. They had to leave part of my uterus and my cervix, as I was losing too much blood to continue and surgery was getting quite dangerous, but they were able to save two healthy-appearing ovaries, and that is great news. During surgery they checked and the fibroid was not cancerous, so much more good news! It seemed like we were on the way, even though I was pretty touch and go for a while. I was drugged up, so no issues for me, but I feel horrible that Scott had to deal with all of this by himself. He did have good support from family, but I hate that he had to go through it while I was lolling around in bed. I spent the night on the step-down floor (between ICU and regular care) then another three nights after that in a regular room with excellent care the whole time. Coming home I was in much better shape than anticipated and even the stairs at home were never too much to bear. Of course Scott was pampering me, which I TRIED not to take too much advantage of....

Scheduling Surgery

I went back to see Dr. O after she had time to review the results, and was met by the news that I definitely had to have a hysterectomy to remove the huge fibroids and misshapen uterus but my pituitary was fine and no brain surgery would be required. She also said it seemed that at least one of my ovaries was viable and she was going to do her best to save both. Yippee! She was still puzzled by the lactation though, since no uterine diseases typically cause that symptom. She decided we would treat what we could see and come back to attack the lactation issue later. I was scheduled for surgery later that week, November 20th, since she was so concerned about the growth and my increasing pain. She definitely didn't want to wait until after Thanksgiving, and for that I was was very thankful, especially by that time. During this ordeal Scott was attending every appointment. To add insult to injury, he had broken his foot in August and was finishing up a rehab period where he was unable to work due to doctor concerns. Not a good thing for our little family in general, but I am so grateful I had him with me through all of this. I cannot imagine being on my own in all of these appointments, especially with my imagination.

On a side note, he suggested we take a short-cut through the cancer center on the way to my first appointment with Dr. O, but I superstitiously told him no matter how cold it was outside I wouldn't walk in there until I had to...

All the Weird Tests leading Up to Surgery

Scott accompanied me to the ultra-sound appointment, for which I made my first visit to MCV downtown (Nov 7th). By the time they realized that the whole screen of the ultra-sound was basically one big black mass (with a moon-man scary kind of face, actually, Scott called it the hellspawn) staff was coming in to see the screen. Nothing like being the celebrity patient. It's strange to be in a building where all the other women are running around with ultra-sound pictures of their unborn babies happy and smiling while you wait for what cannot be good results.

They could not identify or find my uterus definitively, not from outside or inside, and decided I must have an MRI so they could see what was going on. They also expressed some concern, after a phone conference with Dr. O, that there was degradation of the huge mass, presumably a fibroid, and that it could be a rare form of cancer that fibroids hardly ever get. The doctor said it would be like hen's teeth and not a logical conclusion, but that they were worried a bit. First clue, but not one to raise huge red flags. As usual Scott recommended hearing all the facts once they knew definitively before drawing my own conclusions.

Ah, the MRI. So, apparently I have developed quite a case of claustrophobia and cannot be in an MRI tube for any length of time (read: 30 seconds) without panicking. Dr. O ordered three tests, abdomen, pelvis and brain, since the lactation was being caused by sky-high prolactin levels, almost always caused by a pituitary tumor. This would require me to be in the tube for a minimum 1 1/2 hours, something that was not going to happen while I was awake. They sent me over to Stony Point on Nov 10th (near my house) for sedation, but I was still aware and could not tolerate the tube. The worst part was this postponed my test by four days, All the time I was taking pain meds but was feeling worse and worse and missing half of my days or more at work. The nurse made me an appointment downtown for anaethesia, but due to a terminology mix-up they just wanted to do the same thing as at Stony Point. Eventually I got the test on the third try (Nov 14th) under general anaesthesia. Yeah, I know it seems lame, but thats how it is. I tried to go in the machine every time to be brave and get it over with, but just couldn't do it without feeling like my brain would explode or I would try to claw my way out. So let's see what they found...

The Appointment that Helped

I finally got in to see Dr. O'Connell and was immediately greeting by her nice nurse and huge concern about how pale I was. I guess the by-now 50-day period was telling on me. Scott accompanied me, as he was quite concerned about my health. I had been missing days of work, just trying to keep it together until I made it to this appointment. I had developed the rash all over my body, pink spots that I could not resist scratching, even in my sleep. I had dropped about 23 pounds without trying and on the Sunday before my appointment I had even started lactating, quite a shock for a woman with no children and no pregnancy!

Dr. O started the exam, and pressure on my abdomen was making me very uncomfortable. She went in for the internal, and could only feel a mass, no cervix or uterus was in "sight". After palpating my abdomen she was able to determine that my fibroids were huge, then immediately ordered an ultra-sound for two days later. Her concern was apparent and I knew I was going to have to have a hysterectomy, I just didn't know how bad it was. My concern was mostly saving the ovaries so I could keep my natural hormones going as much as possible.

The next day I went to the gastroenterologist, and he also palpated my abdomen (making me yelp like a puppy) , immediately noting a huge mass pressed against my intestines and most likely causing the diarrhea and vomiting. he decided that since my OB/GYN was already on the trail he would just stay informed and let her take the lead, since it seemed to be a problem for her. He did mention that the rash could be related to one of many gastroenterological diseases, but since Dr. O had said it looked like a pregnancy rash he would again defer to her until she was done, especially in light of the ultra-sound she had ordered.

How It All Began...

In retrospect it seems that I've been feeling more and more poorly for quite a while, much longer than I realized until I thought about it. Back in April 2007 I quit smoking and began to feel better, but some months later, while trying to get a new business up and running, it seemed that I started to run out of steam quite easily. While trying to see clients I worried that I wouldn't have the energy to make it through the appointments, and of course I needed to stay pleasant and focused, tough when trying to hold oneslf upright! I started to let promotion of the business slide, thinking I needed to lose the stop-smoking add-on pounds (and more), get in better shape, eat better, etc. It had to be outside forces making me feel bad, or even just age (seriously though, 46 isn't that old).

As time went by I started taking naps in the afternoon when I got home from work, a strange habit to start at age 46. It seems that people are either nappers or they are not, and I never had been before. Eventually as summer rolled around again the humidity was almost unbearable and I started developing a random group of symptoms that came and went, not the least of which was all-over muscle aches, a couple of incidents of all-over joint pain (man, did those hurt) that would last for a day and lay me up. I sought treatment from a new doctor (my favorite GP had just moved out of town) for Plantar's Fasciitis and the anti-inflammatories made me have a couple side effects, but he never found much wrong besides the feet. After his refusal to refer me to a podiatrist I took a recommendation and switched to another doctor. Good news: he immediately recommended a podiatrist, who is one of the better doctor's I've been to ever, but bad news: the GP seemed to treat my other symptoms as a big bunch of nothing, even once I started with diarrhea for more than three months straight and simultaneously had a 40-day period. He literally shrugged and walked out of the room once when I asked him to help. I guess my bloodwork didn't show anything, so that was that.

In the meantime I had made myself an OB/GYN appointment, and I must admit that it had been two years since my last visit. I have been seeing my OB/GYN since moving to Richmond and feel she is a wonderful doctor, however she had switched offices in the last year and it took quite a while to get on her books at the new practice (MCV/VCU Physicians). I had an appointment for October, and was counting the days, even in mid-summer, but her office called and had to push me back to November 5th. I of course agreed, but went ahead and made myself a gastroenterologist appointment the same week, since by this time I was having severe stomach cramps, nausea, diarrhea and occasional vomiting whenever I ate or drank and was dropping weight (not a bad thing, but not the way to do it, trust me). There were times I considered going to the ER, but I guess unless I see blood or a bone sticking out it seems like they'll just poke me to death and never resolve anything. I held off till November 5th, and my next entry will relate that exciting visit...let the games begin!

Wednesday, December 10, 2008

Introducing the Pink Leopard!

I'll be back tomorrow to fill in all the details, but for now it makes sense to create a blog detailing what's going on with me and my new silent passenger, cancer. The logic is that so many wonderful people are concerned, yet I don't always have the time (or energy, unfortunately) to cover all aspects of what's going on with everyone in a timely fashion. This way people can get as much or as little info as they are interested in and I can hopefully quit boring those who are not quite as invested as I am!

The name of the blog comes from the lovely rash I have all over that is apparently my body's allergic reaction to the tumor and Scott's interpretation of what I look like, in a state that very few will be subjected to (really, consider yourselves lucky). I plan on discussing the details, the ups and downs and stuff completely unrelated, so please participate if you choose and I'd love to hear from you all.

Till tomorrow,