Wednesday, June 17, 2009

Cycle 1 is Done & Done

The first cycle is officially complete! WOW! Talk about deja vu. I remember this so clearly from last September. Thinking to myself, wow this is the last time I will ever have to complete my first cycle of chemo. Guess I was wrong back then.

Everyone wants to know if it's easier or harder compared to the last time, and it's really hard to say. One of the absolute worst parts of the entire process has been the anticipatory nausea. It hasn't let up at all throughout the entire process. And even though I was very heavily medicated with anti-nausea pills when we walked into Mayo this morning, I was puking in the garbage can outside the parking ramp elevator on level 10 within mins of just being in the building. It's just that every thing I see, smell, or touch in that building is associated with the horrible memories of going through chemo. And believe me, I soooooooooo wish this was one of those situations that could be controlled with mind over body. I try with all the strength and energy I can muster up each week to not puke, and every week it comes back up and out. It's honestly one of the most frustrating things ever because you really couldn't feel less in control.

One of the best parts of the experience has been my chemo doctor (DRB) and my nurses. There is nothing that compares when you're already feeling super shitty & trying not to puke, when one of my fabulous nurses just walks up to me with a big smile on her face, puts her arms around me without even saying anything and completely comforts me. It's like there is just this mutual understanding and compassion that can't even really be put into words. And today I told them that I feel horrible because sometimes when I'm there I hardly even have the energy to be polite but yet they still take AMAZING care of me.

The other part that's been nice is that I haven't felt as puky sick when they're injecting me with the drugs. It used to almost be a game with me to see how fast I could pass out so that I could survive the chemo drugs. And now it's different. I'm actually able to be awake for some of it, without totally freaking out. Today I even watched part of a movie, ate a cookie, drank a sprite and sent a couple of text messages! It's just such a completely different experience, but I can't say that it's better because I don't think it is, just different. And sometimes I think a change will do you good...

So now I get approx 13 days off to relax, rest and have some fun. Hopefully I'll get to spend some time back in the cafe too! They want to do a couple more cycles before they scan me again. DRB wants to make sure that the chemo has actually had some time to work and doesn't want to scan too early in case the tumors hadn't actually reached their peak growth. And then we'll determine how to proceed from there! Thank you for all the thoughts, prayers, well wishes, support and generosity while battling Cycle 1, now it's time to go to war on Cycle 2!!!

Monday, June 15, 2009

Unexpected Side Effects

Each time they start you on a new cancer drug they give you a sheet of paper with all the possible side effects. It's all very nice and neat, 3 little columns, respectfully tittled More Common, Less Common and Very Rare. Each one then has a couple of tidy bullet points outlining what's going to happen to you when they start injecting that specific drug into your vein. Some of the more fun side effects include fingernail or toe nail changes, muscle pain, fluid retention, sores in the mouth, nausea, diarrhea and fatigue.

But really the main side effect I feel from cancer is EXHAUSTION. It's so frustrating that even the littlest things make you feel like you need to take an hour nap. Or you can barley even enjoy a shower because you're thinking about how fast you can get the shampoo out of your hair so you can go lay down again. And then the sun finally comes out in MN and you have to spend the whole weekend inside on a couch in front of a fan.

The paper work that goes along with cancer is also exhausting. This is one area of the world that should def consider moving to a "paper-less" approach. You get bills, notifications, letters, explanations of benefits and MORE. And they're all written in some foreign language that no one can understand anyway. I think that if anyone receives a cancer diagnosis, they should also get a statement (via email) explaining everything you're in for... and a new pillow for all the naps that one will most definitely need to take!

Tuesday, June 9, 2009

Starbucks Light of My Life

best moment of the day yesterday...


I was grabbing my drink of choice at the moment, a grande, soy, no water, x-hot, Tazo chai latte at Starbucks when the girl looked right at me and said "when did your hair start growing back?"


I was like WOW! Literally, I don't know if I could have been more stunned. This girl standing in front of me is not only serving me my favorite drink but also she "gets it". It was just like one of the best, most honest and sincere questions anyone has asked me though out this whole process.


I told her that it started coming back in March and she said she had been through it before too. I said, it's kinda nice now because it's gotten to the point where people think that this is a style by choice and she just gave me a knowing smile. And that was the end of our interaction but it was one that I won't forget for a long long time.

Monday, June 8, 2009

Interpretation of The Discovery & The Road Map ahead

I'm totally not sick of talking about the cancer stuff at all! And I never mind answering any and all questions, especially when they're coming from people I adore!

SO yes on Tuesday when I went in they found at least 5 more tumors through out my lower abdomen. Two of the ones that they are most concerned about are the ones wrapped around my colon. One is wrapped around on the right side which is your ascending colon and the other on the left side wrapped around my descending colon. (Who remembered that you had 3 different parts of your large intestine, not this girl! 10th grad human anatomy and physiology was a LONG time ago). There is also a small one on the outside of my liver pressing up into my diaphragm, which makes me get the hic ups all the time, also not so fun. And the other two are just around I guess.

We got to look at the CT scan but it was a lot to take in. I also had been on A TON of drugs for at least 48 hours for the pain which complicated the situation even more. But Dr. Bice, not to be confused with Dr. Bryce, was awesome enough to sit with us for almost an hour showing us all the different scans so we could see where and when the tumors had started growing. The two on the colon are each about 6x6x5 give or take a cm and the other ones are smaller in size. So they aren't anywhere near the size they were last time, but they aren't like tiny & insignificant either (bummer).

So Tuesday and Wed were spent discussing whether or not they were going to do surgery. And surgery wouldn't have been to cure the cancer at all. It would only be to remove tumors that were blocking the colon. This really wouldn’t have been an ideal option because if they would have had to do that then they would have also had to start a colostomy bag which may have ended up there permanently. (Bad for fashion and for any attempt at a sex life!) I mean as human we all know each other poops but it’s not like we want to see it… So they did a colonoscopy on Thursday am and discovered that everything was all clear! And let me tell you... I have no problem waiting another 25 years before I have one of those done again. WHEW!

Then they would have started chemo right away on Friday morning but I spiked a 103 fever on Thursday afternoon/evening so they wanted to wait. Not good to start compromising your immune system when it's already in a weakened state. So I will have to do chemo again but the regime and drugs are going to be different. They aren't more aggressive or stronger necessarily, just different, because everyone's body reacts so differently to chemo. And they really haven't treated enough people with Monophasic Synovial Cell Sarcoma to really know what works the best for the majority of people. And I guess even if they did, so maybe my body still wouldn't have liked that option so we may have had to go though the same thing anyway.


So here is how chemo will work this time around. Each cycle is 21 days long and I'll have to go through 6 cycles. I'll get chemo on day 1 of the cycle and day 8 of the cycle. Then be off for the next 13 days and the whole thing will start all over again. The two drugs I get this time are Taxotere and Gemzear. I'll just get one of the drugs on day 1 and then both of them on day 2. Supposedly though this regime will be a little less insane on my body... It only takes each drug about 45-60 mins to drip in, so at the most chemo might last a couple of hours. Whereas last time the chemo process could take from 6-8 hours! Yikes! And there is only a slight chance that I'll loose my hair again vs. the 100% guarantee that I would the last time. And there is supposed to be less nausea but a lot more fatigue. So I guess we'll just have to wait and see....

The Discovery - Not the Channel

The day started at 8:00 a.m with blood work and then the CT at 9:30 a.m. By this time the pain was getting to be even worse that it had been the day before. Which was the worst it had been over the past couple of weeks. So after work on Monday I just laid on the couch all night and took Percocet. So I was already drudged & tired to help control the anticipatory nausea and in pain so we went to a relaxation room where I could sleep till my next appointment.

At 1:00 I woke up because I was in so much pain. So we made our way up to oncology to show Dr. Bryce that we weren't kidding around and get some pain meds. Well he took one look at me and knew that we weren't just dealing with something in my head anymore. Then since he hadn't had a chance to look at them yet he pulled up the CT Scan results.

I don't really remember specifically what he said, mostly because I was only semi-conscience on the couch next to his table, but I just remember him hearing the words multiple tumors and hearing CA just break out into tears. Then there was some talking and some words of encouragement for me... again only some of that actually made it in my ear and then what did make it in was lost in translation of my brain screaming out that my body was in severe pain.

I was uncomfortably stuffed into a wheel chair, rolled down the hall, down a floor, down another hall or two and then down 3 more floors before getting into my hospital bed and getting the best present in the world, PAIN MEDICATION!!! And because it was so severe and I'd been having it for so long, they even gave me one of those great little buttons where you can inject it into yourself as often as you like! Well just as long as it's not more often than once every 10 mins. But still it was a pretty sweet deal and for the first time that day i wasn't complaining!

Sunday, June 7, 2009

CT Scans - The Bearers of Bad News - May

After my April CT scan I was FOCUSED! I had goals! And I had lots of plans to put into action. I was ready to reclaim my life, shake off the cabin fever, shake off the winter weight and get some energy back into my routine. I may actually have to put up some of my to-do lists just because I'm sure all the other type A'ers out there would get a big kick out of them!


The other good news was that I was getting tons of hours in at Smoky Row and Ryder & I were going running on an almost nightly basis. So much so that my customers were starting to come in and say "hey you're the girl that's always running down town with the black dog", yep that's me! And in between these busy activities I was still commuting up to the cities to spend time with my "Spring Fling".


I finally felt like I had gotten some things under control and was starting to build up a routine again. There was a lot more going on but I mean, come on, I have to have some sort of boundary between my personal life and my blog life :) And if it weren't for that pesky internal organ pain, things would have been fine. I mean it wasn't like I had all of life's questions answered but I was in a good spot and heading in an even better direction.


BUT my body hurt. I had pain in the trunk of my body and on both sides. The pain wasn't really specific to one side or the other, but seemed to switch back and forth. And sometimes it just hurt right under my belly button. There was always a dull pain, mixed with some very sharp shooting pains. They were kinda like toppings on a sunday... but not really tasty or exciting. They were so sharp that the pain would take my breath away and I'd have to hold on to something to steady myself and breathe through it, definitely intense to say the least. But I'm so thankful to my yoga practice for teaching me to breathe!


And to give you an idea, here are just some of the things we thought it might be but ruled out because they didn't seem plausible:
* gas pain... CA - "Are you sure you don't have to fart?" AOD "well yea I have to fart but farting doesn't usually hurt for like 2 weeks" CA - "True... are you should you don't just have to fart a lot?" AOD rolled her eyes...

* menstrual cramps... although I had just had my yearly physical and everything checked out fine down there (maybe this should have been one of those boundary things that I should have left out... tbd based on feedback received)

* ovulation pain... that usually doesn't hurt on the side of your stomach ...unless I missed that week of human biology

* pain from working out... easy enough to rule that out... I was more than happy to stop running

* pain from surgery last July... nerves just reconnecting..such a reach... i mean that was almost a year ago


There were quite a few more but this just gives you somewhat of an idea again of the randomness of the pain. And even though we racked our brains and other family members' we still weren't able to uncover any correlations between the pain and any sort of activity or anything else.


So finally on Friday I broke down and made the call to Dr. Bryce (DRB) to get his opinion. The call kinda went kinda like this:

AOD - Described the pain and ran through the lists of possibilities that we thought it might be and then some of the reasons why it couldn't be any of the reasons we had come up with

DRB - Gave me the speech about how once we have cancer it's hard not to think that every future bump, scrap or bruise isn't cancer again, etc., etc., etc...

AOD - Told him that I had kept these thoughts to my self for 2 weeks just in case I was, for some crazy reason, making it up in my head, shared it with my mom and we'd been monitoring it for 2-3 weeks. I also added that it definitely wasn't getting any any better and if anything it's getting worse.

DRB - Again he really didn't expect to find anything.

AOD - Told him it was starting to interfere with my daily activities and that sometimes the pain was so bad I didn't even want to have sex! (oh and you better believe I emphasized that)

DRB - He said that if it was alright with me we would set up a scan that next Tuesday.

Why is it that the sex thing always seals the deal (punned on purpose) for people believing me... Plus my feeling is that he knows how much I detest getting scanned so for me to be requesting one, something was up...

CT Scans - The Bearers of Bad News - April

After our near brush with the me almost having cancer again, Dr. Bryce decided that he didn't want to wait a full 3 months before scanning me again. I was not exactly thrilled about this. Especially since, while I had been on my road trip out west, I had made the executive decision that I was only going to get scanned once every 6 months. This cancer business was taking up way too much time in my life and I had a life to start living again. (Obviously the chemo was still affecting the rational thinking part of my brain... well at least that's what I blame it on. Side Note: Most cancer patients have to wait at least 2 years before they can start receiving scans just twice a year. )

So CA being the sneaky and supportive negotiator she very often is, convinced me to get a scan in April. At that point we didn't know how insurance was going to work for the next 6 months. She was about 100% that I would have it no matter what. I was a lot more breezy, like if it comes my way I'll take it if not then I'll turn to mother nature for her remedies. Again it def appears the chemo was affecting the rational part of the thinking process. Thus I was scanned April 9th. Meet with Dr. Bryce April 16th and finally got a clean bill of health! Happy Birthday Tommy!!!

At this point Team Annie was finally comfortable waiting till July!!!! Sweet! Life can start to get back on track, the cancer thing can finally be put to rest.

CT Scans - The Bearers of Bad News - Feb

I had a CT scan as a post chemo check up in February. They found a mass. My heart stopped. I just finished chemo less than 4 weeks ago. This news had perfect timing as well, since I had been violently throwing up all day. And then my very 1st CT Scan comes back not clean. So to top off all that wonderful news they want to poke me with a HUGE needle down through the middle of my spine. I was not in pain, there was no little child trying to climb out of me, I didn't not have 1 reckless night of passion to produce a surprise. No I did none of these things, however they wanted to poke me anyway.

And what say did I have in this? None. They bribed me by telling me that I was going to at least get a sedative. Lies. There was only a little bit of Novocaine. So the poking begins, I see the whole thing, GROSS! I have no idea why anyone would want to, day after day, look at needles going into skin and through organs. And IT HURT! Like a lot more than I expected it. Well and the other good news is that you get to wait over the weekend to get the results back. Doctors just shouldn't have friends or families so that they can work round the clock just for situations like this. (Kidding Doctors should have friends & families, wait who am I kidding I don't have any Doctor friends...and I'm not really kidding... well may be like 80/20).

So then we waited and waited and waited. I had lots of free time over the weekend so I answered a personal ad on craigslist that's ended up leading to something kinda great.

Then it was more good news because turns out the mass was just some left over scar tissue! YAY!!! Meaning that There was no more cancer (well not yet anyway...)

The Return

WOW So the cancer came back. Who knew? Who would have guessed? If I say that I DID think it would reappear then I totally suck because I'm not using my "powers of positive thought", to effectively change the outcome of life events. If I say I didn't ever think about it coming back I'm totally being unrealistic, so I guess you're damned if you do, damned if you don't. Or AKA the spot I'm in with cancer again.

And besides I thought that doing the last chemo treatment was like an insurance policy to ensure that the cancer wasn't ever coming back. I totally wish there was a way for me to ask for a refund... or a least a little compensation since we all know that it didn't really work for sh*t. Although there is somewhat of a sense of peace knowing that I already know what it's going to be like.

There is a part of me that is just glad that they knew! They were able to look at it and tell me exactly what it was. It didn't need to be flown off to some exotic country to get examined/drink complex pino niors while overlooking the Tuscon country side. I was so scared that I was going to walk back into the doc's office with this random severe pain again and they were going to be like "ummm yea, we're not really sure". I'm just not really up for being a little science experiment, even though my body is determined to act defiantly.

Soooo here we go again...