Tuesday, July 25, 2006
That makes me want to apologize for this blog- I know that those of you that check it are probably bored sometimes. It's worked well as a running record for the Interferon, for people who want a realistic view of what living on it is like. And I guess, because I've found a few people on the web that are going through treatment or have gone through it before, I see a benefit to journal type blogs, as I have a genuine interest in what's going on in their lives now. Seeing treatment from another person's perspective can totally change how you feel about your own experience. Sometimes its so easy to get wrapped up in your own existence, you forget how important it is to connect to the people around you that make dealing with things so much more bearable.
Speaking of bearable, it's finally cooled off here a bit. There was actually a nice breeze tonight when we took the dog out that was- get this- refreshing. That's right: a cool wind. The weather (how old am I, talking about the weather like this?) has been wild here this summer. Within the last 2 weeks, there were something like 7 record-breaking days of heat, all of them with a heat index of over 105, one day getting up to 111. Crazy. And Canada, despite the cold winters, is looking better all the time.
Saw the Derma yesterday, and got 2 moles removed. I'm glad- I'd rather have them in a jar than on my skin any time. The abrasion that I've had since the last derma appointment (3 months ago) still hasn't healed, but the docs insist that it's nothing to worry about. It's the 4th doctor I've asked about it, and I'm going to ask them to remove it again on the next visit, just for the simple fact that so many people with melanoma were seen numerous times for concerning spots that were misdiagnosed. We must be vigilant! It concerns me that so many of my moles are irregular- you know, they show the ABCD's of potentially dangerous moles. I mean, probably 50 of them have some of the signs of needing to be removed. I guess it's a slow process, having them checked and removed as needed, and I know I'll be having scans and skin checks every few months for the rest of my life. Whatever it takes to stay above ground.
The docs also said I need to be wearing sunscreen each and every day, even if I'm just walking to my car and then into work or the like. Good thing Booby likes the smell of coconuts.
Several people have written to ask how I REALLY feel about doing another month of chemo. I don't know what to say, really. One of my friends said, hey, don't you think it's better to do it now than have to do it again later? Yeah, that's a good way to look at it. The truth is, it's only another month. It's been more than a year of doing all this bs, and I don't think it's any secret I'm pretty tired of it. But I'm trying to see it as a stepping stone on the way to the rest of my life.
I don't think I realized it until yesterday at the derma appointment, but I am very fearful of a recurrence, and, I guess I realized in the doctor's office, I'm pretty much convinced it's inevitable. When the doctor walked out of the room and I left, I was sweating like crazy, like bad news was imminent. Leaving, I actually thought, Wow, that was a relief. In reality, people diagnosed with stage 3 melanoma get treatment all the time and live NED for years and years. I read their stories all the time, and try to post as many as possible just to remind everyone how it's not impossible. But this year, I've had very little decision-making power in what I want to do, and I guess that's what I miss the most: I miss the power to be able to decide what I"m going to do with my life. I miss knowing that there's nothing wrong with me and that I'm just a normal person like everyone else. Even just a few months ago, I wanted to quit the chemo, but was talked out of it by my docs and friends. Had it been myway, I would've finished that month and that would've been it. But sometimes I guess we make sacrifices for the good of everyone, and, looking back, I guess that's what this is. I'm ready for it to be over, and it will be soon. It's really not as bad as it could be, and it's almost over.
I guess that's it for now. The job hunt continues, and I've made plans to meet up with some friends this weekend. Plans for the trip to San Diego in November are underway for my best friend's wedding. Exciting stuff coming up, friends. Be good and don't forget to say your prayers.
Sunday, July 23, 2006
The news is that I have to do another month of Interferon. Big-picture-wise, this is not such a big deal. It's just 12 more treatments. Yeah, I'm a little bummed, thinking I only had 4 injections left and then realizing it's another month. Kinda sucks, but, it's not like a scan came back positive or anything, so I'm actually feeling pretty lucky. And I'm sure it'll be over with before I know it, and all that jazz. Anyway.
Parkland was actually kind of a funny experience Thursday. Bobby went with me to mark the momentous occasion (which turned out to not be all that momentous), and was supposed to be with the PA who I saw a couple of months ago. Linda. You know, the lady who I tried to talk to about improving my quality of life while on chemo or getting off the Interferon early, and told me that the side effects "aren't that bad" and that I'm not taking "that much Interferon." Well, I evidently scared her that last visit, (which, let's face it, she deserved) because she wouldn't even come in the room to see me Thursday. She walked by a few times, and then, about 20 minutes later, she sent in somebody else, an actual MD this time, who I actually really like and who was really receptive to what's going on. It was a good experience; the new doc really seemed to take her time, was careful and felt my lymph nodes for swelling (first time that's ever happened at Parkland), and said we'd schedule scans for next month. So, all in all, things could be a whole lot worse.
Not sure why, but the nausea and the rash have been a little worse this last week. I've been trying to get back on track by walking and following my Achilles schedule, but the rash made it impossible for a few days. Worst rash I've had since I was in the hospital, and I had to take steroids two or three times just to get it under control. (That's right, girlie-man, I'm going to pump you up.) It's a lot better today, so I'm gonna try to start the training schedule again tonight.
I've been dodging phone calls and such this last week, since I was feeling so sick. I guess people know when they call and I don't call back that this is what's going on. I hate talking to people when I'm sick, I just don't know what to say and it makes things so awkward. It's hard- I want to be able to talk to them, but then, I hate hearing that sound in their voice when they feel sorry for me. It's really bad with my mom... I think it bothers her the most. I love my mom, and she's such a neat lady, but her being a nurse, this has been the most difficult for her, I think. She's not even really that much of a worrier, not nearly as bad as my dad was. I wonder sometimes if God did this for a reason, if He made sure my dad was gone before I found out I had cancer. It would've driven Dad crazy worrying about me having cancer. I guess the Big Guy really does know what He's doing.
I've been researching Interferon a little these last few days, trying to find web videos and such to explain how Recombinant DNA is made. It's just a natural curiosity, I guess, to see how this stuff works that I'm putting in my body. I thought maybe if I knew, it would work better somehow. Anyway, Wikipedia boils the information down pretty well, and it's interesting stuff, actually. Evidently, "Interferon was scarce and expensive until 1980 when the interferon gene was inserted into bacteria using recombinant DNA technology, allowing mass cultivation and purification from bacterial cultures."
When I was in the hospital, I had this great nurse who used to explain all the meds before he gave them to me, and he told me that one of the reasons Interferon is so hard on the body is because the body reacts to the recombinant DNA the same way that it does an organ transplant, you know, since it's not made of your own DNA and stuff.
Anywho, I guess that's it for now. We've decided to keep the party scheduled for August 19th for now, and just hope I'll be done by then. If not, hey, it'll be a pre-celebration for the big event, and all of you, of course, are welcome.
Hope everyone of you is well. Keep in touch.
Sunday, July 16, 2006
I am so blessed. Maybe I don't say that enough. Maybe, even worse, I don't realize it often enough. But it's true, and when I realize it, I am truly overwhelmed with gratitude.
I was just having a conversation earlier this week and mentioning that over the last year, I've slowly become a little angry- way more than I ever even realized until I started working around kids again- and I'm glad to be back in a place where I know just how lucky I truly am. That's what I love, what I've always loved about kids: they keep you so grounded, so in touch with how human you are and how humble you need to be, and, of course, there's their endearing honesty, too. It's good to have those reminders back in my life. It's good to be able to work with those that keep me so healthy.
With that thought, I begin to think, for the first time in a while, about the future, about possibility, and about walking through fear to a new, better side of life.
Maybe the most important thing I've realized through all of this is that none of us will live forever. We act that way, we pretend we're invincible. And that's why when you find out you have cancer, you have friends that drop off the planet: because the reality of it is too much. But was the goal ever to live forever? No. That's not really what we want. And it's not the goal. The goal is to create something bigger and better than ourselves, and to hope that whatever that is that we can create will live longer than ourselves. If we can do that, we're doing pretty good.
It's been a busy week- I went to a 20's and 30's support group meeting at Gilda's, "graduated" from the teaching program (they even mentioned how I'm finally out of the wheelchair for the most part), have been putting together a portfolio for job apps, started with the Achilles Track program, and am beginning preparation the party next month.
It's exciting, and I'm ready for the change. For the first time I think EVER at Gilda's, I felt like I was offering something positive to the group instead of just venting, and it was nice to be giving back, to be contributing something positive for once.
I've been reading a lot about the end of treatment and the effects it causes mentally, because I'm down to four vials as of today (How awesome is that?), and the final countdown is on. I have to say, I'm pretty proud of myself for being proactive about this, and I think it's gonna really help ease the transition back into "normal life" by being involved in so many other things.
When I met with my Achilles Track coach, Carlton, we walked together for 30 minutes, discussing things I need to be careful of as I try to get back into a routine and what my goals are. He was really positive and encouraging, and I liked him instantly. I'm glad he's here to help in this process.
The walk made me pretty sore: way more than I ever would've guessed. There's pain in my hip and ankles, my back and my jaw, and I've been taking Vicodin for it; but we think a lot of it is chemo, which is great news. Carlton is even hopefull that by October, I can probably do my first 5k!
I'm glad the whole school process is over, although it has been great, and, believe it or not, I'll miss seeing a lot of the people every day. It's been so good to get to know people here in Dallas that are like-minded: progressives that believe that teaching is more than just a job. I can't explain to you what it's like to think what my classroom will be like, the changes I can make as a single person in the education field, the way that knowing I have the power to education people feels. To be able to introduce high standards again, to influence others, to implement a change and a culture of power.
Okay, on my soapbox again. My bad.
Speaking of, I watched The Corporation tonight, and then immediately signed up with the local Green Party. A real motivating film, an extreme eye opener, that I suggest to everyone, and not nearly as slanted as Fahrenheit 9/11, even though it does provide a lot of insight into our nation's dark side. Remind me again why I'm not in Canada?
I guess that's it for now, kids. I'll keep you all posted on the party, so start making preparations now to be here August 19th. I've heard from a lot of internet buddies that they won't be able to be here, but they're going to be toasting in spirit that night. That means as much as anybody else being here, especially those that have braved Interferon on their own.
Keep up the good fight all, and I will, too.
As is the routine, and, at the risk of being a little corny, I like to post some encouraging stories I read on occasion. This one really caught my attention; more than anything, I'm touched by this man's tenacity, high spirits in the face of unbelievable circumstances, and the will to keep up the good fight. I did do a little editing just for brevity's sake, and the piece includes several updates posted by Charles over time (as marked by *). Feel free to check it out on the bulletin board at MPIP if you're interested in reading it in its entirity (with dates listed), as I encourage you to do. I think, and hope, that you'll find this story as amazing as I did. It's a real testiment to not giving up hope and to fighting to the dirty, ruthless, bitter end without relent.
Thanks, Charles, for the inspiration and you'll continue to be in my thoughts.
*In 1997 I was diagnosed with malignant melanoma. I have had nine surgeries in the past eight years. A few weeks after I had one of my adrenal glands removed, last August, the cancer was found in both chest cavities and was determined to be inoperable. On January 17th, 2005 I entered the Ohio State University's James Cancer Hospital to begin five days of chemotherapy...
The chemo (IL-2) was administered with Demerol. After eight doses over three days my neurological system crashed. I was removed from the treatment and I barely recall the next 3 days. The Demerol (discovered from others on this BB that it was the IL-2, not Demerol) caused horrible hallucinations and I was told that my behavior was rather bizarre, an example being that somehow I made my way out of my room, naked, in a wheelchair and was carrying on a conversation with the wall, believing it was my brother.
A week after entering the hospital I bottomed out, having lost all motor functions and feelings in my arms and legs, I lost my voice and speaking was almost impossible. That afternoon I was given IVIG... was not able to take steroids because they would have destroyed any good the chemo might have had... On January 28th, after numerous tests, I was taken via a gurney into the underground tunnel complex under the University's Hospital system and transferred to Dodd Hall, which is a rehabilitation hospital.
At Dodd I continued to receive weekly IVIG and after each infusion I was feeling a little stronger. This may sound like a horror story to you but I want you to know that I was one of the lucky and fortunate patients. My fellow patients included recent amputees, stroke victims, severe brain damage caused by automobile collisions and spinal cord injuries I have regained my voice and ability to speak and to swallow without choking. I walk with the aid of a walker with wheels and I continue with physical and occupational therapy on an outpatient basis. I'm working on regaining my sense of balance, strengthening my limbs and improving my dexterity.
*My doctors and I both agree that I am on the road to recovery. The progress I have made would not have been possible without the love and help that Ludmila and my family have given me over the past weeks.
*I am home and slowly getting stronger, my walking is unsure and my balance needs some work. I go to OSU East Hospital twice a week for physical & occupational therapy. Last week I found out that the cancer in my chest cavity has been reduced by about 60%. I continue to work hard at regaining my strength and dexterity in all limbs.
*Earlier this week I underwent another CT scan and blood work to determine the status of my melanoma which, after nine surgeries, had lodged in my chest cavity and was inoperable. Most of you know... [the chemo, b/c of previous conditions, at one point] paralyzed me from head to foot. Through continuing rehabilitation I am slowly getting stronger. Yesterday I met with my oncologist and was informed that I am melanoma free, cancer free for the first time in nine years. She advised me that if this cancer does not reappear in the next nine to twelve months my chances of total remission are greatly increased. I am convinced that your collective prayers and support, along with my decision to change oncologists, and the love and compassion of my wife has seen me this far in our battle for my improved health.
*A few weeks ago I had another CT scan and it was negative and my blood work was normal. I encourage anyone fighting this disease to work with an oncologist that you are comfortable with. Don’t give up hope and accept all the love, help and prayers from your friends and family. In closing, God bless all of you on this BB for your kind words and support. -Charles[update: Charles has been cancer-free for more than 8 months.]
Top 10 Signs You've Joined a Cheap HMO
|Annual breast exams are conducted at Hooters.|
|Directions to your doctor's office include, "Take a left when you enter the trailer park."|
|Tongue depressors taste faintly of Fudgesicles.|
|The colon specialist is only available on his days off from Roto-Rooter.|
|Only item listed under Preventive Care coverage is "An apple a day."|
|The used needle receptacles have recycling symbols on them.|
|Patient responsible for "200% of out-of-network charges" is not a typo.|
|Your Prozac comes in different colors with little "m's" on them.|
|The radiation techs are wearing old Stormtrooper costumes.|
|The only expense covered 100% is embalming.|
Monday, July 10, 2006
Sunday, July 09, 2006
5 little vials.
What exactly does that mean to you and me? One month of chemo left as of today! One month, people.
Dust off your party hats 'cause it's almost time for the event of the year: The No Mo Chemo Party.
You've heard of the Bionic woman and Six Million Dollar man? Well, the Boob and I spent our time waiting in line at the pharmacy the other day adding up the cost of the last year's medical adventures. I think I could feasibly be their love child. The value of my body breaks down like this:
11 months of at home injections: $132,286
1 month of in hospital high dose treatments: $200,000
33 day hospital stay: $500,000
1 stool sample for my "favorite" nurse: freebie (and eternally satisfying)
14 treatments of Vancomyacin: $14,000
1 toe removal: $30,000
Various scans: $100,000
Salvation Army Wheelchair: $60
Kytril (5 pills): $1500
Vicodin, Lexapro, Phenergan, Ativan, steroids, etc: $20,000
Outliving all you b*tches: PRICELESS!
The tentative date for the "No More Chemo Party" is August 19th. Mark your calendars, save the date. You are expected to show. Come as your favorite prescription drug and you get a free syringe of vodka!
As far as how things are going, here's the gist: the chemo is hurting me today, but I think, more than a mental state, it's probably the fact that I sat out in the sun for a while trying to get my car started. Plus, there's the fact that I'm having trouble with bowel control. Yes, that's right, kids, we're back where we started. We've gone from week-long constipation to dropping a load in my shorts 2 or 3 times a day now. Actually considered getting Depends today, and for good reason. Jeez. I'm so ready to have this all over with.
It's hard to think it was a year ago on August 9th that all this began- not the cancer, but the chemo. I'll never forget that month in the hospital- the days taking years to pass and eons going by over the 45 days it took to get discharged forever. Wow.
I'm not going to lie and say I'm not scared that remission won't last. It's really common for melanoma patients to find tumors or more malignancies in the year after chemo. It happens, and that's reality. My friends, they don't want me to talk about it, but I feel like I need to be honest and just embrace the fact that this may not be the end of this fight. When I threw a fit and told Dr. Daya I didn't want to do chemo any more, he flat out told me, "If this melanoma comes back, it will only be a matter of months before it will have taken over your lungs, your liver, your brain. It moves that quickly, and it will all be over."
It's a chilling thought- especially for someone who thinks the world revolves around them... that I could be gone, just like that. I know we're all dieing in the whole all-encompassing sense of things, in the way that none of us can escape it, ultimately. But once you've been touched by the reality of death, the way you think of it is totally different. And, on the other hand, you struggle with it the way your "old" self would, too. I'm reading "Dancing in Limbo," a great book about the way cancer changes life more than we ever know until we're faced with life after treatment. I read the other day a great quote, and I just had to share it with all of you: The author wrote that, "[s]urvivor grief is a paradox. It seems wrong to grieve when we have got what we most wanted- another chance at life. Furthermore, we are grieving major losses... we grieve a deeper loss. Our most comforting illusions are gone. We are both mortal and vulnerable, and we know it beyond a doubt."
I don't think it's a coincidence that cancer patients are more likely to suffer from depression after their year of chemo is over than when they are in the midst of treatment. Life is different. People who don't understand you and break you down instead of building you up seem invisible in a lot of ways.
Melanoma, it's rough enough on it's own: an aggressive, quick-moving cancer that nobody wants to think about. Lots of people never deal with melanoma-or, the beast, as its commonly called- after their first year of fighting it, and then, you know that some do. You pray this will be the only episode, but you want to be prepared either way. I feel like acknowledging that somehow helps me to win this fight.
In the real world, I'd just bluff my way through a confrontation when I was scared.
Here, in cancer world, it's different. It's a much bigger deal. But I've been lucky: had great doctors and great luck, and I guess, in a way, that's why I'm here, to beat the odds. Just a simple girl kicking cancer's ass.
What really surprises me is now that the chemo is coming to an end, I feel strange about not having an active way to fight the cancer. You hear survivors say, "everything has changed," and, for the first time, I'm seeing why they say that. It's a change I'll never be able to explain, just like I'll never be able to explain why, in a strange, sick part of me, I don't want the chemo to end. But I'm doing what I've learned to do: I'm stepping into the scary place and pretending I know what to do next. It's the old "Fake it till You Make It" routine, and all I can think to do is focus on eating right, getting active again and rebuilding a part of my life I've missed out on. I've joined a running club called Achilles Track Club and it's specifically for runners with "disabilities," as wierd as that sounds to say. I'm very excited to get back into the joy of running, and I meet my mentor on Wednesday, who's going to set up a schedule for me so I can start taking part in local fun runs and such. Most of all, I miss the freedom that running allows, but there's also the appeal of the discipline and comraderie you find in running. Plus, I can't wait to look good in a bathing suit again. And isn't that what life is really about?
Thanks for listening to the rant. I know some of this is scary, but for those faithful few of you that are always with me on here, you help tremendously by simply being present. Seems like we did this together, and now I can't believe how close we all are to the end of this again.
I'm thinking of all of you and how great you'll look dressed as suppositiories! Keep the comments coming....
Tuesday, July 04, 2006
This has been quite a week on its own. Started out Thursday, going to get my chemo at the pharmacy, where we waited only an hour or two, when they called me up to inform me my insurance had been dropped.
Full blown panic.
Preceded to go to my new friend's house and deliberately tried to drown these troubles away, Hank Williams, Sr., style.
Friday, early, I went back to the hospital, this time the "Financial Counseling" department, trying to figure out what happened. Turns out, I had to have a copy of my lease with me to be seen (just as a general rule, I guess.) Bobby went, hunted down the landlord like a good bird dog, and brought it back an hour or so later. Then, presenting that, I could get on the list to be seen. Took another hour or two to get to the next step of being seen, when they simply called me back, reviewed documents, and reinstated the insurance, telling me I could go about being seen.
Went to oncology where they took blood for a CBC, and told me they'd call with results next week. Whatever. I've still heard nothing. Took the Procrit anyway because I knew I was extremely anemic. Tried to get the chemo from the Oncology department where I got shut out in the 9th inning and they told me I had to go to the real pharmacy to get it filled.
Went to the pharmacy across the street to get the chemo, waited another couple of hours, when they call me up and Bobby forces the pharmacist to explain to me that they're out of my chemo, because he was too afraid to do it himself. Finally got the chemo from (guess where!) Oncology yesterday. Crazy what I'll do to get this sh*t.
So, the good news is (kinda) that I haven't had chemo since last Tuesday, making me feel great and skyrocking the appetite along with the other sex drive, which, is awesome, of course.
Wow, this is a long, boring blog.
Bad news is, I'm a bit behind on the treatment schedule. But I guess it's been a good break. I'm just so ready to get it over with, and with only 6 vials left (and no refills), it's much closer than we all think. Hello No Mo Chemo Party!
Spent Sunday night out with a new couple of friends, doing the couples' thing. It was good time and fun to show some new kids around old Deep Ellum. Although the Boob and I are typically a little reclusive, I have to admit, even though the only thing I was on was Vitamin V, I was a good girl and we enjoyed it. Lots of couples invites this week, but we didn't take anybody else up. Maybe it's that we're reclusive, maybe it's that we really enjoy each other's company and everyone else pales. Either way, I'm good. A little too good sometimes, Fargo style good. Not woodchipper Fargo style, but Margie and her husband good. Youbetcha.
I've been a little under the weather since Monday morning, barely leaving the house. A long time ago, at Gilda's, someone told me that chemo would, eventually, cause gastric issues. I thought, having diarrhea the first 7 months, that this was the "gastric issue" they were referring to. NO, wrong. THIS must be the gastric issue they're referring to. Evidently, taking the pain meds on the reg has thrown the system for a loop. I won't get into details here, but it's been rough (see blog title). Hopefully it'll be over by tomorrow.
Anyway, time to take the chemo again. 6 vials left! Yeah!