Thursday, May 22, 2008

The wonderful world of Holistic Medicine & Raw foods (Part 1)

To those of you who know me you will probably be a little surprised to hear about my recent enthusiasm in the field of holistic medicine. I have never been much for investigating into this field, partly because I never felt a need to, and also because I was never as motivated as I have been recently to.

My holistic experience began when I read a book called "Crazy Sexy Cancer Tips" by Kris Carr (link should bring you to her web page). To those of you who are cancer survivors or who are interested in it you should definitely check it out, it greatly helped me. I picked the book up in the airport on my way to my business trip in Malta the week before I was due to start radiation. I'd heard a few people recommend it, and it's gimmick was that it was a book geared towards women in their 20's and 30's living with and fighting cancer - it sounded right up my alley! :)

I honestly couldn't put the book down. I think I actually finished the entire thing by the time I checked into my hotel in Malta less than a day later. So many pieces of her story rung true to me: the incurable cancer, the Dr. saying well you'll just have to wait and see, the feeling of wanting to do anything anything possible to combat our diseases. It was very uplifting to say the least. I also stumbled up the chapter in her book on health/food/immunotherapy (boosting your immune system to help it fight the good battle) and the idea of the Standard American Diet (acronym SAD -- how apropos) being something that can cause or at least allow disease to eat through your immune system.

From her book I first learned of what's called a "Raw and Living Foods Lifestyle", basically it is a raw vegan lifestyle. No meat, no fish, no dairy, no eggs, no wheat, no processed foods...and here's the bigg-o NOTHING COOKED (well at least not cooked above 112 degrees). She backed up her argument for why this type of lifestyle support building immunity and drowning out cancer cells with some pretty convincing facts, but her opinion alone wasn't enough. I dragged my mom and sisters out to a couple of bookstores the following weekend and bought about 6 books that all talked about the theory and facts behind why eating raw works. Of course there are countless stories of people whose disease essentially disappeared by eating this way, and those always help one who's desolate feel a little better too :). But I was amazed at the amount of chemically intrigueing information was available on the ways the body reacts to cooked food, to non-organic processed items, etc... it was enough evidence and made more than enough sense for me to add this to my repoitoire of armor in my battle.

I started a raw diet about two days after that, during the last week of February, I actually tried to start on Feb 26th (the day after I finished radiation), but sadly my Uncle had just recently passed away and his wake was that evening -- which in my family meant a nice big ole' dinner would help us put a bit of pep in our steps after the solemn evening. So I started the next day :)

So far (I'm giving myself a small pat on the back) I've been doing o.k. with it. By no means am up to doing 100% raw, but I'd say in a typical week its about 80/20 which is a considerable change for anyone. Though as my mom pointed out I do seem to have pretty good will power when it comes to diet changes in my life (for those of you who have seen me lose about 30-35 pounds since Jan 2006 and keep it off since then).

There are quite a few tasty places even in the Boston area to eat out for Raw Food, two of my favorites are:

Grezzo and The Organic Garden

Grezzo is an upscale gourmet raw eating experience and is located in the North End in Boston, and The Organic Garden is a bit more like a regular cafe serving sandwiches, smoothies, pizza, salads, and entrees etc.. up in Beverly, Ma.

More on the rest of my holistic stuff coming up next...

And the results are in.

So obviously finding anything out on Wednesday was no-go and I honestly can't even remember what I did that evening to try and distract myself? ...hmm losing my memory already.

Thursday morning I was tense from the moment I woke up as anyone can imagine, knowing that today I would hear whether the news was really good or really bad. I know people say to me that I need to get used to the anxiety surrounding having scans done, or that I should be able to some how accept whatever results come in, but to them I say BULLSHIT. What 25 yo is ready to die? Or even less dramatic what 25 yo is ready to hear news that you have stage 4 metastatic cancer only 3 months after initially finding out you had any cancer at all? I'm going to go with "not many". Trust me, one of my biggest aspirations and hopes for this experience is that I will somehow manage to find a way to be at peace with myself. That may sound a little hippy dippy, but it's become the most crucial thing in my world these days. I don't have any regrets, which is a good starting point, but I still feel jipped that I may not have the opportunity to have a family, be married, buy a 1st house, all those things.. actually I feel more than jipped that shit pisses me off. So like I said there's quite a few things I need to reach a compromise on with myself. Like I need to learn at some point to be o.k. with dying before 90-100 years old (not saying that I will, but I very well could and this has made that much more clear). I've been trying to refocus on this that I feel are priorities in life for me, the things that will help me feel like I've done everything I've wanted to do, but its hard because just surviving these days takes up most of my waking hours. I know that sounds like oh poor pity me, but its not a calling for people to come save me, rather just how the days feel recently. I do feel lucky in that I have a very beautiful young niece whom I've had great opportunity to see weekly for quite a few months now, she is both a blessing and a remembrance of the things I want. Though I try to tell myself that if something happens and I know I won't have the chance to have children that maybe my brother will let me borrow her for a few months or however long it is they say I have left. Then I could at least experience what caring for a child and loving a child like your own would be.

O.k. sorry I went a little off the beaten path there, talking about kids always gets me a little teary. So back to Thursday. I came in to the office and luckily had a meeting scheduled for first thing in the morning. I apparently did not contain my anxiety as much as I'd hoped as my coworker approached me later saying he was concerned and wanting to know what happened (almost my entire office knows about the situation, which is actually a lot easier for me).

When I came back down from my meeting there was an email from Dr. Sato as follows:

On 5/8/08, Takami Sato wrote:

Your images were reviewed by our MRI specialist.

We concluded that the lesion in the liver would be a "Focal nodular hyperplasia (FNH) ". This is a benign liver lesion, frequently seen in healthy people. Based on your history, we would suggest repeating MRI in 3 months (this is already planned for sutent). Once you have all necessary tests, you could ask Dr. Friedlander to check the results. If he is comfortable, you may start med.

TS


Woot woot! Seriously this was the best, most relieving day I'd had yet. I was beyond myself so happy that they had a name for the mysterious benign spot and that it was in fact benign - yay!

So that meant I got to go in the next day (Friday) and have 3 heart tests done, and then meet with my local onc. Dr. Friedlander to review the heart tests and to get baseline blood work done. He said he would call me Monday afternoon and let me know the blood results and if all was well I could start that afternoon!

All was well, and I am now on day 11 of my oral chemo, Sutent. So far so good. The side effects vary with every person, as does every treatment that cancer patients receive, but can range from: upset tummy, fatigue, headaches, low white blood cell counts (the kind of blood cells that fight off infection and support your immune system), low platelets (the things that help your blood clot), anemia, chemo anorexia, high blood pressure, white hair, and a slew of other things. Some people have these plus others, some people don't have any, and I honestly don't think there's a guideline for saying "if you don't feel this by day x then you won't throughout treatment" -- so I'm just taking that one day at a time. I would say I am fatigued, but as my mom knows it's usually because I don't sleep and am constanly going - not from the drug :)

As for monitoring I'm the lucky gal that gets to go in every week to see her oncologist to get a few vials of blood drawn and my vitals done to monitor my body's reaction to the chemo. My poor doc, I seem to have white coat syndrome around him so my normally very healthy and low blood pressure (105/65 or so) skyrockets -- this past Monday (5/19) it was a whopping 158/92 I think the guy thinks I'm lying -- so I bought a digital blood pressure cuff at my mom's suggestions (good idea mom.) and have been monitoring myself at home/work where I am more relaxed, and low and behold, my bp is actually low. Must be all that running and eating of nuts and seeds.

Speaking of running, anyone interested in doing a 5k or half marathon? I've been dying to set an exercise goal so I can get out of my "do the elliptical" rut and think I could manage one or the other. There's a LiveStrong (Lance Armstrong's foundation) 5k in Philly on the weekend of August 23rd-24th that I'm considering, so if anyone wants to join I'd love to have running partners and maybe even a team. I might get even more inspired and make us all eye cancer t-shirts if you're lucky! :)

Next post, my tyrst into the somewhat wacky but very helpful world of Eastern medicine.

Wednesday, May 21, 2008

Waiting, and waiting, and waiting

and waiting and waiting. Seems like it can be an eternity, but yet when the phone finally does ring I never want to actually hear what the Dr. on the other line has to say. I suppose that's a by-product of my "the glass is always half empty so that way if someone fills it up you're really happy" point of view.

So I waited. The scans were done on Wed. April 30th and I had an appt. w/ Dr. Sato on Friday May 2nd where he would have the "preliminary" results and we would be able to discuss my starting Sutent.

May 2nd was a pretty good day, or at least the beginning of it was. When I arrived and saw him he started babbling on about the protocol we were going to set up for Sutent and when I would come see him next. When I asked him about the results he said "oh we don't have the final report yet, but I'm not concerned." I thought o.k. that's good enough for me. Later in the day though after we'd left and started our trek back home I started to get curious, did they get the final report, what exactly did it say? So I called the nurse who handles my case and was told that I would need to speak to Dr. Sato himself about the results, and that more or less things were the same as they had been in my previous MRI. I wrote my doc an email (great guy too because he actually responds to emails) and he told me he would be in touch after the final report came in and to go ahead as planned getting the various heart and blood tests I needed done as baseline for starting the chemo. It was a stressful weekend.

Monday morning came and went, but by Monday afternoon I felt like I either needed a stiff drink or a few, two, three of my anti-anxiety meds (specially prescribed to help me supposedly be less anxious about having cancer) to get through the rest of the day. The waiting was killing me, so I called the place I had the tests done and was told that the final report had been completed. I set off from work to go pick up the report myself. Now, if you read the previous post where I went and picked up the report and freaked out because it had something on it, you could imagine my family's hesitance for me to go and pick this one up. Especially b/c there was a slightly different circumstance surrounding my MRI. Dr. Sato had instructed me to get my scan done at the same place as I had the previous time, but because of the squished and expedited time schedule I had to get it done at the place that would take me the soonest, which was not the same location. Due to this I was warned that sometimes different machines/ different radiologists measure and see things differently , blah blah blah. So my mom kept reminding me that if I picked up the report I should keep that in mind. She also insisted that I wait for my father to meet me at the hospital before reading the reports (luckily he was working near Boston that day). So he met me, we got the reports, and I got depressed.

The MRI showed that the area in my liver was measured at 6.5mm this time compared to the 5-5.5mm it had supposedly been in March. My mind obviously settled into the worst case scenario, metastasis to the liver a mere couple months after my initial diagnosis. I felt myself for the first time screaming about how unfair this all was, that I couldn't even be so lucky as to have a little time off from the intial diagnosis before it becoming stage 4 battle for my life gladiator style. I was pissed, depressed, heartbroken, and utterly just broken, period. I felt like I hadn't even gotten a chance to fight and the fight was already getting harder. Like I was going into it with a severe handicap.

My dad tried to be reasonable with me and explain that we really didn't know anything because we had to wait for Dr. Sato and his team to compare the MRI cd's and determine whether or not it was true growth or just the x factor of having been done at a different location. I figured I would hear from him Tuesday.

One of the most positive things that has come out of this whole experience occurred that night though, I got to spend unwarranted/uncounted/and completely uncensored time with my dad. We talked about things that I'd never thought to talk to him about before, philisophical crap and real stuff, we talked for hours about the meaning of life and what we're each meant to do. I quizzed him on how he dealt with my illness and what made him able to cope since I was having such a hard time finding any ground to put my feet on. Don't get me wrong my dad and I have always been close, but this was different, this was me sharing an emotional part of myself and being able to share that with him was incredible. Obviously cancer at a young age brings about a lot of ideas of mortality much sooner than I think most 20-year olds would consider, and it felt relieving to discuss things with him, instead of glazing over and talking about other matters.

Tuesday alas came and went as well, with no word from the doctor's office. I reached out and asked all my friends, family, extended online support family, to keep me in their thoughts and prayers in this difficult time.

Wednesday morning the Dr. office called, and as I held baited breath the nurse said "Could you tell me where you got your MRI and the phone number? Dr. Sato wanted to see the final report."

WHATTTTT! Here I was ready to contemplate my tombstone and he hadn't even gotten the report yet! I sent him a little email inquiring as to the delay and was told to fax the report over to his personal line and that he would call me on Thursday after looking at the results and comparing the cd's.

Yet another day to wait.

I love having a plan.

Calling all Type-A cancer survivors out there: Hi! I'm one of you. I wondered when I got diagnosed if my personality type would change drastically as I have always been a type-A likes to have things be perfect and organized type of gal. But to be honest, that part of me hasn't much changed, I do think I try and be less "perfect" about a lot of things these days and go a little easier on myself, but when it comes my health care I am definitely and gladly so still anal.

So, like I said began my mission to put together an aggressive team of people that could help me do everything I can to beat off this "beast" as they say in my list-serv group.

I took a few-pronged approach which I still consider to be the right path for me for now. There's both a more eastern/holistic approach and there's a kill the suckers with serious toxic western drugs approach -- both I consider valid and helpful in their own right.

Step 1: Find a Dr. who is aggressive and knowledgable about this disease and get him to take me on as his patient: check done. After my less than fulfilling experience here in Boston and my extensive and scary research I sought out a Dr. in Philly called Dr. Takami Sato. He is one of the leading (and few) metastatic uveal melanoma oncologists in the US. They're not exactly run of the mill types of folks. In any case I had read quite a few reports of trials/research he had done and was utterly impressed by the fervor that he took on in trying to find a cure for this disease once it had spread. I also got numerous references for him from my online list-serv group "Ocu-Mel". I immediately contacted his coordinator (during my rehab from eye surgery week) and requested an appt. She said he would be happy to see me and we set a date for March 3rd- exactly one week after my last radiation treatment. In the waiting time of going to see him I compiled a list of questions, and of possible adjuvant (read: proactive before the disease spreads) treatments to bring with me to this appt, wanting to be prepared.

My March 3rd appt could not even be compared to being in the same ball park as the one I'd had with Dr. G. Dr. Sato sat down with my mom and I for 3 HOURS UNINTERRUPTED and answered any and all questions we had. He discussed possible treatments, a few things to look into, my "real" prognosis, and developed a very aggressive scan schedule for me to enact when I arrived back home in Boston. He agreed to be my doc and told me he would back me in pursueing any of the options I chose (YAY!).

Side note: For those of you who are lucky enough to not really know what a "scan schedule" might entail it means getting regular MRI's/Ultrsounds/PET/CT scans all of which are diagnostic imaging and can be used to detect tumors. They are considered light years more accurate than waiting for your blood tests to come back abnormal (which is the protocol Dr. G. uses to determine whether or not you have had metastasis --boooo to him). You could potentially have a 10cm tumor in your liver and have normal blood tests. But you could not have a 10cm tumor in your liver and have it not show up on any imaging tests.

I left Philly feeling hopefully for the first time since being diagnosed, and also felt determined -- much different from the somewhat depression I'd slipped into over the previous weeks reading countless stories of people constantly dying from this disease -- or so it seemed. I came home and on the drive back with my mom wrote up a "Plan". The plan had a lot of detail, but I will spare you those.

Step 2: Start getting scanned regularly. Dr. Sato had suggested an ultrasound/MRI of my abdomen every 3 months for the first 2-3 years post my initial diagnosis. Additionally there would be semi-annual chest x-rays, and blood work. I was to get my 1st MRI ASAP and let him know the results.

That was when the waiting began. It really sucks waiting. That is a massive understatement, but unless you are in a situation where someone is about to tell you whether or not your battle for life will be exponentially harder or just that of the average cancer gal I'm not sure you would understand. There should be some way to put people into a temporary coma or something for the few days/week you have to wait for results to come back, that way you don't die of anxiety (or "scanxiety" as some say) before actually getting your answers.

So I went for my 1st MRI and ultrasound, somewhat chipperly as Dr. Sato had intuited that he was fairly sure everything would be negative, so I tried to remain positive. The scans were on Friday March 7th, and on Tuesday March 11th my PCP called and left me a message saying "I got your results, by and large everything looks fine." I thought PHEW! and went to the office to pick up a copy of the reports and the cd's for myself (a little trick I've been taught and find necessary to keep my sanity when dealing with 20 different dr. offices..) . I picked the report up and started to read... Ultrasound: NORMAL, MRI: not so normal. There was a small approx. 5mm large area on my liver that appeared to be benign given its shape/location/whatever other diagnostic tools radiologists use to determine tumors from benign stuff. I of course FREAKED OUT. I called my PCP back screaming "How could you say this is NORMAL?" took the day off work, had my mom come out to hold me as I thought to myself I can't believe it's already metastatic...DAMN. Skip ahead.. after another painful week and a half or so, and a PET/CT (ordered by Dr. Sato to apparently "ease my mind") I received the good news on March 18th that the spot was indeed benign and that my full body scan (the PET/CT) was NEGATIVE. A small celebration took place in the shape of a big dinner at Texas Roadhouse w/ grilled chicken (my old fav), rice pilaf, and a yummy baked potato. Not to mention some delicious cinnamon rolls.

I was told the spot was most likely a hemangioma, a small FNH (focal nodular hyperplasia) or some sort of vascular deformation. (although I know what these mean, I'll leave it up to you all to investigate their definitions if you so desire).

Step 3: Find a local oncologist who would basically be willing to listen to and do Dr. Sato's every word. Much harder than it sounds, and it even sounds hard. I basically had to forgo going to anyone in the MGH/MEEI community because they all sided with the infamous Dr. G. and that it wasn't useful to do liver scanning since there's no proven treatment for liver metastasis (to me that seems like saying 'well since we don't know the cure to any of these things, we'll just stop trying'. 'what you have a liver tumor?' I can't hear you, I'm blissfully ignorant!') -- yeah not going to work for me. So I found a great Dr. at Dana Farber who was willing, though he constantly repeats "this is not what I would do (well dude you wouldn't know what to do actually, b/c you treat skin cancer not eye cancer!), but I will support you and follow you anyways". Like I said great guy, at least very open to working w/ Dr. Sato and it helps that Dr. Sato is well known in the melanoma community to say the least.

Step 4: Get set up with some sort of adjuvant treatment. My first approach was a vaccine therapy trial at Sloan Memorial Kettering (which if any of you are CM patients and are curious about I'd be more than happy to share the details). Unfortunately you had to have a specific tissue-type to be able to participate in the trial, and I did not. Bummer. The next try was to start an application for a fairly new chemo drug Sutent which was being used in a few clinical trials for ocular melanoma. Dr. Sato was currently using it, but only in patients who had metastatic CM and a guy on the West Coast was using it for adjuvant treatment (though it was piggy-backed with Cisplatinum and Tamoxifen) for high-risk for spreading patients like myself. The suggestion had been to try and get Sutent on my own, off label through either my insurance co. or through the drug company and Dr. Sato would create the protocol for me to follow (as he was/still is considering an adjuvant trial with Sutent for high-risk patients, given the promising results seen in the current trial).

...insert Jeopardy waiting theme music here....

After almost two months of waiting (started the application March 11th and received my first bottle on Tuesday May 6th) I had finally gotten Pfizer to provide me with 6 months of treatment: FREE! The drug typically costs $4,000 per cycle for the dosage I am using - crazy huh? I of course had to go through the whole lot of having my insurance deny it a few times before being able to actually apply for assistance through the drug company, but for now that is all set.

Now the only thing that was waiting between me and starting this treatment was that Dr. Sato wanted to do a follow-up MRI of my abdomen and Chest CT to have the most accurate and close to starting date of Sutent baseline images (i.e. making sure I was still actually without any metastatic disease). Time for another freakout. I was not ready to get another scan, I had tucked that little scanxiety box away in a corner to collect dust bunnies and cobwebs until the end of June when I thought I'd be going for my next set. Unfortunately, the decision was either have the scans now and start the Sutent if everything was clear, or wait until June for the scans and if clear start the Sutent then.

As I was convinced by my many friends, family, and of course loving bf that it was absurd of me to come this far to push so hard to be proactive and then pussy out, I decided to go ahead and get the damn scans...waiting yet again for results.

Abridged version for your sake :)

I thought I'd be kind and lump some of the following into a more condensed version so that people don't get too bored with the intricate details (myself included). Though if anyone is wondering about more details, feel free to leave a comment or email me and I will gladly bombard you with the minutia of things.

So, after that highly un-impressive visit with my Dr. at MEEI (let's call him "Dr. G." from now on). I went home and put my over $200,000 worth of education brain to work and threw myself into research. I found statistics, articles, two - exactly - two support sites for people with Choridal Melanoma, and lots of info about the eye and cancer that I never had any burning desire to know before this.

In a nutshell, Choroidal Melanoma is the most common adult ocular malignancy, however it is also one of the most rare cancers. It's incidence is only 6 in 1,000,000 (that's right 1 MILLION!) people-- lucky me! Not only that but the median age for a person with this disease is somewhere between 60-70 years old (NOT 25!). It also unlike many cancers in that it is not unanimously "staged", instead it is usually graded by "size" as one of the determining factors in a patient's prognosis. The sizes range from small - large with no specification for those of us who are X-small or X-large. I fell into the medium/large category. A large tumor is described as one who's largest tumor diameter is 16mm or greater, and/or who's height is 10mm or greater. I was 16.1mm at the largest, but only 6.5mm in height. Lucky me yet again. I was told by one of the dr. that if this sized tumor were anywhere other than they eye they would just go in and "pluck" it out and be on there way, but the eye is a much different story.

There are three well known types of treatment for choroidal melanomas, though various other methods exist as well : enucleation (removal of the eye), Plaque brachyotherapy (or plaque radiation), and Proton Beam irradiation. I chose to have Proton Beam, though I'm not sure it was actually an active choice so much as being in the right location at the right time. I still believe, after all my research that PB will give me the best odds of having no recurrence in my eye, and also of hopefully some day (when the fluid in my eye drains) regaining some of what is now lost vision.

The surgery for the rings (which guide the radiation machine) was fairly painless, I've definitely experience much worse pain when I had my two ACL reconstructions. And I was able to attend a business trip in Malta (Feb 13th-18th) inbetween surgery and starting my radiation. The trip was both a good distraction and a horrible idea. I was so lonely being that far away from home, and a bit sick from the lack of sleep and nerves about the upcoming treatment and about ya know having cancer at 25. However it was a good thing to be at conferences all day and also my boss and coworkers were very impressed that I showed up and I'm glad I did as I think it gave me more "street cred" :) when I needed time after the radiation.

Oh a little more about my learning: the 80% no spreading was a load of crap, and I later discovered that in fact my chances were much closer to 50/50 over the course of my lifetime -- with no way to tell where I would fall in that spectrum. Now some of you may be thinking, "if it spreads you just fight harder... go-team-go", that's great positivity, buuuuttt not all that reassuring facing the stats of my disease. Seems that choroidal melanoma (CM) spreads 1st and most likely to the liver (about 85-90% of spreading shows up here first), then to the lungs, and finally anywhere else. Now the downside to all of this (cuz ya know having cancer itself isn't all that bad, it's only bad when you can't guarantee a win), is that metastatic (the fancy word for cancer that has spread) CM doesn't respond to most treatments currently developed for the killing of cancer. hoo0-rayyy (imagine my sarcasm if you will..). Apparently CM is a very resilient little bugger once it spreads, and although there are many valiant doctors and pioneer patients trying all sorts of different treatments there is no known protocol for treating it once its spread. That said, if it spreads and you do nothing the average life expectancy is 2-8 MONTHS. Yeah, that's also very not cool if you want my opinion.

So anyways, after accumulating some knowledge and finishing radiation (I only lost a few eye lashes, have a small burn, but have lost most of the vision in my left eye) I saught out a Dr. that would be willing to pursue an aggressive proactive plan to try and combat this aggressive cancer.

Day 3 of visits: The final official word.

"You have a malignant choroidal melanoma. We need to do radiation therapy to treat it, and then you will come see me twice a year for 5 years and once a year after that for checkups and that is that" (imagine a pompous old man rubbing his hands as if to say "and I'm done with you- NEXTTT").

That was the extent of my diagnosis day. My Dr. in Boston, who will remain nameless as I still need him to be my ocular oncologst (they're a bit hard to come by...) despite my not so nice feelings for him.

The day was jam packed with testing, and more testing, and me asking my mom to entertain me and her responding "what do you expect me to do, dance?" (To which I replied 'yes' b/c quite frankly waiting at the oncologist's office is not exactly my idea of a relaxing morning and anything to distract me would have been nice right about then.) The Dr. answered very few questions, though his team was much nicer. I gleaned what I believed at that moment to be "accurate" information 80% chance it WOULD NOT spread in the 1st 5 years and then a dramatic decrease thereafter. I walked out feeling slightly less defeated, despite officially now having to sign my name Carissa Caulfield, cancer patient.

I was setup with all the items I would need to get started on the fast track to radiation. I would have eye surgery to place tantalum rings around my tumor on Feb 5th, and the would spend two weeks recovering before beginning Proton Beam radiation on Feb 19th-25th -- that's right folks 5 days of radiation only and that is by protocol IT, ALL YOU CAN DO, ALL YOU SHOULD DO, just go home and be normal after that -- but don' t forget your semi-annual blood work.

WHATTTTTTT!!!!!!!!?????????

That definitely was not going to fly with me. That night when I got home began my extensive (and I mean exttteeeennnnsssiiive) research into the world of uveal melanoma. Learn some of what I've learned in my next post...

Day 2: Final word, but not officially

The next morning my mom, my boyfriend, and I headed out to see this retinal specialist here in Boston. When we arrived I went through a similar procedure: dilated eyes, pictures, exam... except this time this Dr. (who was a complete and total sweetheart) gave us the bad news. He believed it to be a malignant choroidal melanoma. ::Enter scare end of life music, tears, and loud sobs:: all by me of course. I think my mom and boyfriend were both in SHOCK. As was I, but I was also bawling my eyes out. Outfit: A previously "lucky" outfit, stretch black pants, black turtleneck, and comfy empire black/white/yellow cotton dress, w/ black peep toe shoes. This outfit has pretty much been banned from my wardrobe.

The Dr. tried to lift my spirits a bit by saying that the treatment at MEEI (Mass Eye and Ear) was the best I could get for this disease, and that we could test for TB and maybe that might come back positive (a good thing at this point, as it would indicate an infection behind my eye). Alas though it was not TB and is in fact cancer.

The rest of this day was fairly blurry as well, I know I had a chest x-ray and bloodwork done to see if it had spread. Though from what I know now that was completely insufficient for an initial testing.

I retreated home to my parent's place, and then went to Maine for the weekend with my mom, bf, littlest sister, and aunt to try and get a little peace of mind before the actual "final diagnosis" day on Monday when I would meet with the Ocular Oncologist at MEEI.

Mind you at the time my family had decided it would not be in the best interest of my younger siblings to tell them that it was cancer, at least not until after we had the final word. So the weekend was spent trying not to say that in front of my younger sister.

It was a pretty teary weekend as my emotions ranged from that of "I can beat this thing, I will beat it down! I am healthy I can do anything (this happening both when I was a bit intoxicated, and also when I was running -- nothing like fresh air, the ocean, your body working hard, to make you feel alive!!) to I'm going to die soon, I'm sure it has spread, I probably don't have much longer, I want to quit my job and have kids now! etc...

I remember my most distinct thought when the Dr. told me what it was, I didn't feel regret for anything in life, I didn't have a list of "I wish I had.... or I wish I hadn't ..." and I was very very proud of that, I did however have a stabbing pain in my heart that held my desire to want to be married and raise a family. I don't know when this desire became so poignant, but it did, and it was there being threatened by this awful ridiculous disease. I'm still trying to come to terms with this...but more on that later.

The night it all went awry

A fairly ominous sounding title no? I figured that since I always get asked the question "How did you first notice?" I will put the story down in writing.

Jan 21st, 2008: Steve and I went out to a kitchy little place in Harvard Sq. called "Casablanca" for one of our "date nights" and to celebrate our anniversary. We had been on very good path recently, with things in the relationship really starting to look like they were moving ahead well, and we felt closer than we had in quite some time. The dinner to say the least was fairly forgettable, though the company was not. We chatted about buying/looking at houses, starting a family, getting married, all the things we typically discuss when things are going well with us :) The night was lovely, though short-lived as it was a Monday and we were both zonked, so we headedhome shortly thereafter. I think I will always remember what I wore during this first week of being diagnosed. Outfit: Knee-length green silk halter top dress, with my sparkly silver cardigan and silver open-toe high heels -- I tend to associate clothes with events I think (i.e. lucky clothes vs. not-so-lucky clotes).

When we arrived home I went to do my usual get ready for bed routine -- you know remove makeup, pin back hair, etc.. except that when I went to wash my face and was washing off the makeup on my right eye I noticed that my vision with my left-eye was all screwy. The best way to describe it is it looked conical, as if everyone was in a fun-house, or at least the tops of their heads were. I immediately panicked, and Steve immediately tried the usual "I'm sure it's nothing, come to bed, go to the Dr. in the morning" routine, as I can tend to be a bit of a drama queen. In my gut that night things didn't feel right, I had a hard time sleeping and was utterly disturbed by this visual defect. I woke up early and made the earliest appt. I could to see my PCP.

January 22, 2008: Outfit: Pink tufts hooded sweatshite, white tank, white shoes (that my mom hates even though they're very cute) and fav. pair of comfy jeans -- though I hate jeans in general. I didn't even shower that day, just got up, dressed, and went in to see the doc. I had just gotten over a severe case of bronchitis and was somewhat hoping this could be related to that...but highly doubted it anyways. So I went in, the NP took a look at my eyes and said I think you should see our Opthalmologist because she couldn't find anything wrong with me. Next step was getting shipped downstairs to the Opthalmology department (mind you this was the 1st one I think I'd ever been to as I had always had 20/20 vision). Whether it was luck or dumb coincidence my mom and sister happened to be driving towards Boston to drop my younger sister back off at college that day, and so my mom - who was in the loop about all these appts. - suggested they come and wait with me..it was a good thing they did.

I saw the Opth. and she dilated my eyes, something that is now part of my daily routine, did an eye exam and took pictures. She told me she saw a "mass" pushing on my retina and that was what was causing my vision disturbance. Looking back now I'm not sure why I didn't feel my stomach drop when she said a "mass" was there, but I guess my mind had not jumped to cancer. Though it didn't take more than 5 minutes for that to happen. She referred me to see a retina specialist the next day and told me ultimately I would end up seeing this guy at Mass Eye and Ear -- the Boston guru -- as you would have it. I was walking out, obviously disturbed, but not devastated because she told me the various benign things it could be and didn't mention cancer. However, as my luck would have it, as I was passing her office I saw she had just pulled up the pictures they had taken and she told me I could take a look. I walked and and when I saw it my heart dropped, I knew it was cancer...

The rest of the day was a horrible blur, lots of crying, lots of thinking about dropping dead tomorrow, about never being able to have children, about feeling extremely anxious for not having a real diagnosis yet despite knowing in my heart that it was malignant.

Thus began Day 1 of my new life with cancer.

A little about myself first

To all you lucky people who have found your way to my blog, welcome and hi!

I've never been very good at writing or journaling, so this may be a disaster, but quite frankly I'm writing this for myself first and foremost and those who wish to read may do so at their own discretion. :)

Like I said, my name is Carissa, I'm 25 yo and living in the wonderful Boston neighborhood known as Somerville, not a bad place at all. I'm finally in my own one bedroom apartment, which is quite a change for me since I grew up as the eldest of 5 living in a raucous (but very fun) house with 7 people and multiple pets.

I won't go on too long, as I think most people who read this will already know me, but just in case...I grew up in lovely Western Mass, and had a pretty great childhood. Played tons of sports, danced, had lots of fun and exciting birthday parties, awesomely supportive parents and a pretty smooth sail through my young adult years. Of course there were the typical blips: arguements about my mom disliking my boyfriends, or lying to be able to sleep over at a "co-ed" party when I was in HS, but really not much out of the norm I would say. I did however spend my entire young adult life working to be the best little perfectionist I could be (a character flaw and a blessing at the same time) and ended myself up at Tufts University out near Boston. I did a double degree in Economics and Spanish (spanish being a life-long love, and econ being a newly discovered passion) and graduated having done pretty well for myself in 2004. After a futile, and in all honesty not very aggressive, job search I resigned myself to applying for Grad school, something I knew I wanted to do, just ideally not right away. I got accepted at Tufts for a Masters in Econ, and at the same time got accepted into a program for Teaching English as a Foreign Language (TEFL) that would commence in Madrid, Spain. As many of you know I spent about 7 months in Alcala de Henares, a small suburb 30 min. outside Madrid, my Junior year of college and fell IN LOVE WITH SPAIN!

So after much deliberation, I deferred grad school packed up a few items, deceived customs into thinking I was only going for 3 months, and moved to Madrid with one of my best friends from college, Andrea, and another girlfriend Kyle. The year was amazing! I missed home, but loved Spain, and to this day still keep in touch with a tight group of people I met and taught with there -- though we suck at trying to pull together reunions.

After that fun and exhausting year away I came back to do my MA. I started in 2004 and finished in 2006 and the years in between were arduous, and nothing like what I had hoped...but there was a light at the end of the tunnel (other than the MA attached to my resume), which was meeting and gaining more incredible friendships which I still have today :), so all was not lost.

Then it was time to enter the real world...something I don't much enjoy in terms of being a 9-5 slave, but I suppose especially now that I NEED insurance this is an evil I must endure. So I've been doing that for a couple of years now. One of the few positive things about my job has been that my boss and coworkers have been amazingly understanding throughout all of this.

So outside of these "normal" stats about who I am here's a few other tidbits about me. I love my family first and foremost. The original 7, now 9 of us, are extremely close despite all of our differences and I would not change a thing about any of us, or our experiences growing up if I could. I continually find myself beyond blessed for these people in my life and for how much strength,love, comfort, laughter, and support they provide me with. They are my rock.

Outside my family, I've got great friends, though it seems these days they're scattered all across the world and so it's a bit hard to physically "hang out" with them, but I do what I can when I can to visit.

As for hobbies, I used to love to play soccer, now I love to watch (but not on TV!), I like reading (but mostly mindless fictional pieces either about FBI espionage or chick books about shopping/marriage and the likes -- hey I think I did enough "intense" reading during my Masters to last me quite a few more years). I also love being by the beach, not necessarily on it, but definitely by it, and love running on the beach when I get the chance. I'm a dog person at heart, though due to my small living space currently have a very cute and lovely kitten named Sammy -- but I hope one day to have a big ole' husky :). And I guess my other big passions are doing anything outdoors (though I do despise nasty little mosquitos), and running - lots and lots of running.

I think that's enough for now...

be well and be happy.