Friday, November 2, 2007
Tuesday, October 30, 2007
This is my friend, Dona, a woman with a steely will more powerful than a Mack truck. Dona takes no prisoners when it comes to fighting her disease. She appeared in the Beautiful Eight video with me and she has two gorgeous little boys.
Both Dee and Dona are doing very poorly.
Do you think that the universe hears your thoughts and can pass on strength and feelings of peace to those who need it? If so, may I request your good thoughts for Dee and Dona?
Friday, October 26, 2007
I manage to get myself showered, fed and off to work. But, I have this thick fog around me. I feel hazy and trying to focus my thoughts makes me want to put my head down and sleep. If I direct my thoughts down one path, I inevitably end up veering helplessly off and tumbling down onto another before I realize it. Suddenly, I'm lost and need to clamber back up to my original thought. It's work. And, sometimes embarrassing.
I also feel a bit like I could be getting a touch of the flu. A bit achy and rundown. Yeah, the weather is dreary and cool. But, really. What's my deal?
Ah, yes. I've begun chemo again. So quickly I forgot how poorly you make me feel old friend. How did that happen? Never you mind. Just go ahead and do your work. I know you can't help what you are. I'll try and figure out how I am going to put up with you again. No hard feelings. Just some pretty miserable ones.
Monday, October 22, 2007
The entire radiation procedure took approximately 20 minutes (so I recall being told) and the "other site" that showed up on scan is still unidentifiable and apparently smaller. So, it was left alone to die a miserable death by upcoming Avastin infusions.
For the rest of the weekend, I did generally nothing. My Mom really helped out with meals and entertaining The Kid. It was great to have her there. Especially since I was having math issues and couldn't figure out just how many of which pill I was supposed to be taking at what time. I'm chalking it up to transient, post-treatment issues. Although, I did do laundry. I'm always doing laundry and there is very little math involved in that. Except addition. Finally, there was The Kid's soccer game on Sunday. Another beautiful, but un-fall-like day. Cripes, that was a paragraph of nonsense, wasn't it?
As an aside, I wonder if they sell these by the pound. I could get a good deal and it seems a lot easier than drawing them on every day.
Tuesday, October 16, 2007
It doesn't end there.
I told The Kid that my hair was falling out and showed him some evidence. His response? He rolled his eyes. Oh, yeah. Rolled his eyes. It is only his cuteness that assures his continued breathing.
Thursday, October 11, 2007
Tuesday, October 9, 2007
I am, however, hitting a few events this month. How can I not? One is a bash that is always fun and offers an intriguing swag bag. At least, there was that one year and that one item... The other is an educational conference focused entirely on the metastatic population. I'm looking forward to hearing what progress is being made in treatment options for metastatic women, and to catching up with and making new friends.
If you're interested, you can support the Young Survival Coalition here and the Metastatic Breast Cancer Network here. Go ahead; 'tis the season.
Monday, October 8, 2007
- Sipped coffee on the sidelines of a dewy soccer field while watching The Kid work on his skills. The big happy grin on his face reflected in my own.
- Had a school/soccer friend of The Kid's over for the afternoon on Saturday and enjoyed watching the boys play football in our yard on a sunny, unseasonably warm fall day.
- Performed a minor makeover on our flower beds by yanking weeds out hand-over-fist to the tune of one ginormous heavy-duty garbage bag. My rose bushes are happy again, as are what was left of my peonies, which have been mercifully put out of their misery for the year.
- Enjoyed the company of friends we hadn't seen in two years. Our patio was the setting for burgers, dogs, wine, juice boxes, brownies and lots of catching up. The kids, who have known each other since they were six months old, took turns bombing down our driveway on one of the "grown-ups" long boards.
- Fulfilled the role of track support for My Love, who participated in a skill-honing advanced rider training program at Pocono Raceway on Sunday. My Love rode his/our bike to the track, while The Kid and I followed him in the car with his tools, lunch, camera, clothes and anything else he needed for the day.
- Went around the track faster than just about anyone else when I got on the back of professional rider's bike. Have you ever seen the world sideways from a motorcycle? I recommend it.
Friday, October 5, 2007
Why? Because you are asking the patient to assuage your fears. Not only can the patient not do that, they likely have no interest in doing so. They are having a hard enough time keeping their own fears in check. Managing yours is your problem.
I offer this helpful reminder: Stage IV breast cancer is disease that has left the primary site and has invaded other parts of the body. Current imaging techniques may not allow physicians to see all of those places, but in all likelihood, the disease is somewhere, even when scans come up clean.
So, I will be having gamma knife to provide local control to specific sites in my brain. Is it going to be fine? No, it's not.
I have to get a frame screwed to my head and keep it there for about five hours while they MRI my brain and then take the time they need to map the radiation. Further, during the MRI, which is going to be more finely sliced than my routine MRI, there is the possibility that they identify additional sites. Should those sites be numerous, they'll bag the whole gamma knife thing and start considering whole brain radiation which, just like it sounds, is when they radiate the entire brain.
But, let's not go there. Let's take the most positive scenario. After the scanning and mapping and waiting, I'll get my head screwed down to the treatment table so I am immobile while they shoot beams of radiation at my head.
But before then, I get to think about this for the next week or so while things get scheduled. Of course, ruminating on this will be even more fun while in transit to the medical center for the procedure in New York City metro traffic.
After this procedure is done, I will able to resume my standard I-have-incurable-cancer anxiety level. I will continue to need chemotherapy as it is the only tool I have to try to keep my disease at bay.
I am a hopeful, smart, spirted and determined person. I am not an ignorant person or worse, one who is in denial. I cannot make this situation better for anyone. Don't ask me to pretend.
Wednesday, October 3, 2007
- Called Rad-Onc #1 as recommended by My Oncologist only to learn he doesn't accept my insurance.
- Researched gamma knife facilities in New Jersey. Found a place only a short 40 minutes from home. Spoke at length with a member of the staff to find out what is needed from me to get on the books and move things forward. Called My Oncologist to have said things faxed to the facility. Called to follow up to confirm receipt of fax and heard nothing for three days.
- Called My Oncologist again to get another recommendation for a gamma knife facility. Called Rad-Onc #2 and spoke at length with... see above. However, this time I got a call back within a day-and-half with an appointment for consult this Friday.
- Received call back from the New Jersey site after booking the consult with Rad-Onc #2. They had an appointment for me on Friday. Imagine the staff member's surprise when I told her that they didn't move quickly enough for me and I have moved on to a more responsive facility.
- Called hospital where scans were done to request disk of brain MRI to bring to Rad-Onc #2 for viewing at consult.
- Drove an hour-and-a-half to hospital during rush hour(s) to pick up disk of MRI images.
- Had STAT CBC drawn this morning before going into the office. I'm eager to take another step down on the steroid and My Healthcare Team is interested to know if my platelets are holding following infusion of Avastin last Friday.
- Having not heard from My Healthcare Team about the previously mentioned STAT CBC, I follow-up via phone this afternoon and find that they haven't received the results of my STAT CBC. My Healthcare Team says they will follow up with the hospital and get back to me.
- I missed a phone call from THE Head Nurse because I was in a meeting. She leaves a cryptic message saying I should call her back in the morning to talk about "what to do with the prednisone." On the up side, she didn't say, "Get your ass up here for a platelet infusion or more IV Ig."
- What? Isn't that enough?
Tuesday, October 2, 2007
Sunday, September 30, 2007
St Therese of Lisieux, the Little Flower, is a Doctor of the Church and today is her Feast Day. Although she is my namesake, it wasn't until my breast cancer diagnosis that I began to get to know her. Since then, I have come to rely upon her when I am fearful and doubtful. I also strive to follow the example of her life to guide my own. I even make near-daily attempts to put her "'little way' of doing ordinary things with extra-ordinary love" into practice. And, what I find most comforting about St. Therese, is that if I take the time to look for evidence of her, I often find it.
Wednesday, September 26, 2007
I suppose completely clean scans were too much to hope for considering what I've gone through this summer. But you know me... hope, hope, hope. All things considered, though, My Oncologist and I realize I came away in better shape than I could have. At least, that's what I'm telling myself right now.
- Bone scan: Clean
- Chest CT: Previously radiated pulmonary nodes continue to show decrease in size. No new evidence of metastases.
- Abdominal CT: Clean
- Pelvic CT: Clean
- Brain MRI: 6 mm nodule in left anterior temporal lobe. Possibility of additional puncate mets in deep right parietal lobe sulcus cannot be ruled out.
So, game plan: I am going to have the 6 mm nodule duly fried via gamma knife as quickly as possible. After nearly three years of faithful service, I am ditching Taxotere and adding Abraxane to my treatment regimen. It will be given in combination with Avastin. The hope here is that shaking up the chemo will be what I need to cream the possible mets that cannot be ruled out and get me into a stable holding pattern. Again. A long one, please.
Assuming my insurance company goes with the flow, I start my new regimen on Friday. This coincides with my last planned IV Ig treatment. I am now down to 20 mg of prednisone per day and today's platelet count, just for the hell of it, is 125.
I'm moving forward, peeps. Keep up.
Friday, September 21, 2007
"Tracy seems like a bright girl, but she's totally sophomoric."
Now for some context. As I attempted to lay as still as I possibly could in the bone scan machine last Thursday, with the scanner mere centimeters from my face and chest, I had just one word in my head: asshat.
Questions you may have at this point include:
- Why is the only thing in your head the word "asshat?"
- What, exactly, is an "asshat?"
Because earlier in the day, while my sister Jamie was calling me one via IM, Dear Friend was looking it up for me on urbandictionary.com:
A close cousin of the ass-clown, typically identified by a jovial expression and an outward misunderstanding of how he/she is perceived, combined with a generally misguided conception of what is sociably acceptable amongst his/her fellow peers. Said persons' frequent attempts at humor usually lead to he/she making an ass out of his/herself. Not to be confused with ass-hole.
"Quit throwing pennies at that homeless man, you asshat."
"Hey asshat, thanks for double parking."
The bone scan takes twenty minutes. I thought for sure the image was going to come back with a huge blurry mess where my head and chest are supposed to be. You've no idea the ginormous quantity of restraint that was exercised to wrestle my brain to more mundane thoughts.
Thursday, September 20, 2007
During the drive, James and I talked easily and a lot. I, being a mature 28, was taken by how genuine he was; how truly kind and decent. And, at such a young age! I didn’t know it at the time, but I was just getting to know one of the best friends I will have in this lifetime.
Technically speaking, James is My Love’s friend. After all, My Love did meet him first. And there is all that boy stuff: liking cars, having a passion (some would say death wish) for scuba diving, enjoying a cigar here and there. You know. But James quickly became a part of our family, and his presence and importance in our lives has only grown over the years through moves, the birth of The Kid, my diagnosis and other crap that life throws your way, good and bad. James has been there for us with friendship, support, love and fine beverages.
So, I’ll bet right now all you single ladies in the house are just dying for a date with this paragon of manhood. Well, I’m sorry to inform you that, in addition to worming his way into our hearts and lives, James pulled the same stunt with Lovely Sarah. Only, I’m guessing the strategies were somewhat different. Ever since I met him on the highway that night, I’ve wondered if James would ever meet someone who would truly appreciate the caliber of kindness and love he could lavish upon her, and who would also be eager to heap it right back upon him. Lovely Sarah, I am so happy to say, is that person.
Lovely Sarah also has a kind spirit and a generous heart, and she is joyously, wickedly fun to be with. She shares her goodness just as quickly and easily as James. Plus, she’s a great vacation pal, as she totally gets the importance of good margaritas and massages when boys go off and do dumb boy stuff.
So imagine the joy that was concentrated in New Hampshire last weekend when James and Sarah were wed in front of so many friends and family members who, like our family, are the happy revellers in the combined love that can only be created by the pairing of James and Lovely Sarah. Imagine the joy that will continue to be and grow around all who know them, simply because they have found each other.
I called the hospital yesterday to schedule the scans and unbelievably they asked me to come in today. I usually have to stew a week or so before I can get in. I love these people. They have been seeing my sorry face every three months for seven years and they work with me. My large number of tests does not usually get done in one day. But as soon as these folks find out it's me scheduling, they try very hard to arrange things so I can get everything done before 3:00 p.m. It's fantastic and I make sure to send them a thank you card after every go round.
Dear Friend, with her somewhat annoying habit of always seeing the bright side, reminded me that being able to get my scans done so quickly means that I have less time to get all anxious and worked up about them. But, I apprised her that, being the highly-skilled nutter that I am, I am fully capable of getting two weeks’ worth of anxiety packed into 24 hours. I am that efficient.
One thing I am looking forward to: Taking the R6 up to the hospital. Woo Hoo!
Anyway, off I go. Wish me luck.
Monday, September 17, 2007
First, this drama's final details:
- Today’s platelet count: 108
- I started chemo again last Wednesday. It was just the Taxotere. Avastin is on hold because, as a biologic therapy, it may be complicit in causing the platelet problem in the first place. Once things are more stable, I believe we are going to give it another go. I hope so. I progressed on Taxotere monotherapy last year and I want my Avastin back.
- A new plan for IV Ig is in place. I will continue this therapy three days a week for the next two weeks. During this time, I will also wean off the steroid. This revised plan should help my body continue to strengthen its ability to create platelets and reduce it reliance on this F-ING steroid safely and, critical to depriving My Love of bragging rights to justifiable homicide, sanely.
- Scans will be scheduled before the end of the week.
Sunday, September 9, 2007
My dear, dedicated and highly professional healthcare team were taking bets on what my CBC was going to come back with when I showed up in the office for the first time in over two weeks last Wednesday. Not sure how I feel about the fact that THE Nurse was pegging me at 18. Others were more optimistic. The winning healthcare professional (Price is Right rules apply) came in at 50. Her prize: getting to administer my IV Ig and monitor me for the morning. That will learn her.
Friday morning found me back at the oncologist's office, this time with 70 platelets! That's treatable range folks. So a plan has been devised:
- IV Ig last Friday and orders to stay on 60 mgs of predinsone through the weekend.
- Tomorrow should be my final treatment of IV Ig and I will hopefully begin weaning off of the prednisone.
- Wednesday (oh, please; oh, please; oh, please) I will be back on my regular chemotherapy treatment for the first time since June.
However, be assured that despite the slowly enveloping calm, I've got a full frontal view of my next anxiety attack: scans that should have occurred in August will be scheduled shortly.
The adventure never ends.
Sunday, September 2, 2007
My Love and I will be leaving soon. We'll grab a train and head for Heathrow early this afternoon. I'm going to miss being here, but I am coming home with so much more. And I'm going to share it all with you.
See you soon!
Thursday, August 30, 2007
Mama misses you and thinks of you every single day. I am waving toward to ocean and am picturing you playing in the surf with your cousins. (Hi, Lily and Rowan!) Jason, did Nathan have a great birthday? I love you, baby. I'm going to see you soon and give you lots and lots of kisses.
Good night, sleep tight. Don't let the bed bugs bite!
See you soon, Stinky Pea!
Sunday, August 26, 2007
I've gotten some good wishes from the other chickies here and decided that I would love some more. OK, lots more. Please post heartfelt birthday wishes below. Be sure to include the part about how inspiring I am.
And it case it isn't coming across in my desparate 15-minute typing increments, please know how much you have all inspired me. I couldn't have made this trip without you all.
Saturday, August 25, 2007
Today we road from Killen to Aviemore, with a stop to lead a HOG rally along the way. It was Amazon Heart that lead the way. The Scotish Highlands are beautiful. They do remind me of the Lake George area of New York. Lots of piney things, but with gorgeous heather tucked in here and there for prettiness. If they have a lot of something in Scotland, it's sheep. That's not a joke. So I found myself singing Bah Bah Black Sheep to myself much of the time. However, you should know that this is not a PC thing to do. You may only say "fleecy sheep" now.
Oh, I also learned the way to say "F Off" with a simple hand gesture. This was purely by accident, as when we would ride past other bikers, I'd toss off one of my American-style peace-out signs down to the right. Apparently, this can be misconstrued as F-off because a backward peace sign means just that. Yay me and my international relations skills.
Also attended the Scottish HOG rally evening festivities. FANTASTIC! I heard these amazing Scottish bands that rocked Highland style. Awesome stuff. I wore my Harley shirt with sleeves and made lots of new friends. Can't get them here. Between sets, they played good old American rock. Including Bon Jovi! Woah-oh, we're half way there! Woah-oh, livin' on a prayer! Fun to watch the Scottish rock out Jersey-style.
And, just for Pop: I ate haggis. And it was good.
Thursday, August 23, 2007
So, my previously allocated Night Rod was reallocated to someone else who felt more comfortable on it. I was asked to try the Street Rod. Looked cool to me. The pegs where where I used to them, but, when I sat on it, it seemed a little tall for me. We couldn't take them out until they were allocated, so I just figured if it was tall, then I would just count on being able to throttle it. See, I had a plan.
Any way, I was the first rider in the first group behind the leader. So, I am lined up first to go out right behind Amazon Heart-founder, Meredith. There are 18 women behind me, two who just go licenses yesterday, waiting to see how this is going to start off.
So, I open the throttle, start going, engine cuts, I catch it. I start it up, throw the throttle wide open -- just in case it needs a good clearing -- and ease of the clutch. And the engine cuts. And now, because my feet don't touch the ground, I am trying to hold up a bike that feels like 1,000 pounds that is tipping to my already compromised right side. And... down it goes. Broke the end of the brake lever off, too. Harley dude comes over and tell me that the throttle is really touchy on this bike. Great. Information I could have used previously. Thanks.
So, of course, I hop back on. Really open the throttle and follow Meredith off down an empty road on a college campus with the rest of the women behind me. And... the engine keeps cutting out. I just couldn't seem to get the hang of keeping the throttle open wide enough and stalled every few seconds.
Meredith hops of here bike -- the Night Rod -- and asks if I'd like to switch. Damn straight I do! Of course, this bike has forward controls and my feet feel all funny on it. But, it's low to the ground, my center of gravity is great and I can stand up on it. Guess what? I can ride like a champ. LOVE IT!
So, the group completed its brief tour of Edinburgh, which, by the way, is just spectacular. I'm so in love with this place. And, we returned safely back at Pollack Halls, which is at Edinburgh University. Everyone on the trip is amazing. Everyone has come for their own reasons, but in spirit, there are all women who hate to live with limitations, take on challenges, have great respect for other people and are just dear.
I have been adopted by an Australian woman, Suzanne, whom I believe my mother has sent. She is forever asking if I'm tired and making sure I feel OK. She is also quick with a glass of Cabernet. We get along just fine.
I have a 30 minute Internet card here. And I've got 12 minutes left despite furious typing. So, I am not going to proof as well as I should. And I am not going to put in links for the bikes now. So, if you're interested, you're going to have to do some googling yourself.
Oh. One more thing. No symptoms of low platelets. Honest to God and God bless prednisone.
Tuesday, August 21, 2007
Tracy: I am so conflicted. Nurse says the number is fine. It's the instability that is a problem. I'm not showing I can hold them. And I won't have IV Ig for two weeks.
Dear Friend: Is there anything you can do or bring on the road? Or someplace you can stop along the way?
Tracy: Not fair to the other riders. This is ridiculous. Why not a clear yes or no? Why the ambiguity?
Dear Friend: Did you talk to the onco yet?
Tracy: In the waiting room. (Pregnant pause.) You know I'm going to do this, right? I don't have the luxury of "there is is always next year." God. What am I doing?
Dear Friend: F yeah you are going lady
Tracy: I can't live like that. I can't live with the regret. I'm so conflicted.
Dear Friend: Well, just see how the convo goes. See what he thinks.
Tracy: How can I "defy breast cancer on a daily basis" and then... not?
Tracy: He's letting me go.
Dear Friend: You just got a yaaaaay from Ops. I am so happy for you! Are you?
Tracy: Now, I'm terrified.
Dear Friend: Why?
Tracy: Because I am going to do this. I'm going to go.
Dear Friend: You can't think about what-ifs.
Tracy: Nope. I have to go for it.
Dear Friend: You're going to be a rock star.
In my mind, there is no choice. I set this goal and started looking forward to meeting it a long time ago. Yes, I knew complications from my health could jeopardize it. I said as much at the very suggestion of this adventure. But, family and friends recognized this opportunity in all its fabulousness, gave me encouragement, support, (and money), and I set about doing what I always do: trying to live my life the way I want to as best I can.
However, my Healthcare Team, God bless their dedicated, brilliant, supportive souls, has very legitimate concerns about this. They want this for me; they get it. But, their responsibility is to supporting my overall health and keeping me alive as long as I can and want to be as best they can. And my perception of ambiguity does not exactly jive with theirs. Letting me run off halfway around the world on a motorcycle without the support of IV Ig for two weeks hardly skims advisable. In fact, it could set me back and, possibly, put me in a critical situation far from their skill and knowledge. Not to mention their way-too-intimate understanding of me, my health history and how I operate. I am setting out on this adventure fully aware of the risks I am taking. Not only am I temporarily abandoning my IV Ig and stepping out of immediate reach of my Healthcare Team, I am also delaying a return to chemotherapy. Remember that stuff? It's terrifying, yes. But last night, I also realized it is also so F-ing invigorating! Sort of like this:
When I am out on my bike, I work on my leans. Lifting and tilting myself over left or right to get the most out of every single turn I make. Mind you, I suck. But, the thrill is there and my adrenaline pours. I know that with each turn I make, I learn and improve. It's risky and challenging. But it feels awesome!
So, when I was sitting in the infusion room yesterday morning, trying to figure out how and if I could do this, I had a lot of things running through my mind. There was the thought of how on earth could blasting up and down 287 three days a week be any less dangerous than what I intend to do? Then there was: I chose My Oncologist six years ago based on the fact that he was willing to doing things differently, and take well-reasoned but definitely bolder action that other physicians. How can they expect anything else from me? Then, oddly, I thought of someone I hadn't in a few weeks, Miles Levin, the teen aged cancer patient who has given thousands the splendid gift of his passion and joy for life as an example through his oh-so beautifully written blog. He died this weekend just shy of his 19th birthday. And, of course, there are the Beautifuls who have died, Angela, Mary, Shannon and Christine. There is also Lisa M., a driven, vivacious, F-cancer woman if there ever was one. One of my first YSC friends, she died four years ago this week. There are also those who continue to live with this disease, shoving it back fiercely and doing the things they want to maintain and defend their stake in own lives. Like Angie, who trained like hell and just completed a triathlon (!!!) and Dona, who has has the love of darling little boys to sustain her mets-threatened bones as she contemplates her next assault on her disease.
In looking back on the conversation I was having with Dear Friend, I can see that, despite the tug-of-war I felt going on between my practical, sensible self and my F-it, independent self, F-it had already taken the prize and was sitting quietly in the corner waiting for me to notice. People living with cancer have to make all kinds of difficult decisions based on piles of uncertainties during their cancer fight. So, in response to the one I face: I am going to the UK to ride a Harley-Davidson 1,000 miles. I am going to do it with my eyes open and with full understanding of my health situation. Should I become symptomatic, I will get myself home immediately. I will not drop the bike on myself.
I'll post when I can.
Friday, August 17, 2007
Wednesday, August 15, 2007
Tuesday, August 14, 2007
Monday morning's platelet count was 17. I felt Cautious Optimism perk its little head up when I got those results back at the oncologist's office. Dear God, am I actually on the right track now? After IV Ig treatment, I was off to the blood center for another platelet infusion. I bumped to 62. I am hoping that tomorrow, taking into account the time the correct dosage of prednisone has had to work and the added support of IV Ig, I am around 40. Following on this upward track, by Friday I am hoping to have a conversation with my oncologist about a plan for me to go to the UK for the ride.
As if I weren't all nutted out about this already, I received an e-mail from the team at Amazon Heart that outlined the bike allocations. I am slated to ride this.
Hope is a powerful thing.
Sunday, August 12, 2007
I know this because, thanks to my disease, he's been holding me up for seven of our 12 blissful years of marriage. Don't dismiss this fact as an unmeritorious obligation of marriage. I know many a marriage that has not withstood the test of breast cancer.
Of course I have friends and family who are always willing to do what I need them to do, or be where I need them to be. But My Love just is. All the time. Every day. Every night. Because of him, I have what I desire most: a loving family of our own creation that is my deepest joy.
So, in keeping with this summer's theme of utter chaos, it is completely without shame that I admit to you all that I forgot our anniversary. Entirely. But, before you crucify me, know that My Love also forgot. Oh, yeah. And, had it not been for a phone call from his mother offering good wishes on this important day, God knows when either one of us would have remembered.
Happy 12th Anniversary, My Love. I'm looking forward to so many more. If I can remember them.
Anyway. The gist of it is (and here I paraphrase from some legitimate reviews) that when people try to imagine what the future will hold, they make some basic and consistent mistakes. Just as memory plays tricks on us when we try to look backward in time, so does imagination play tricks when we try to look forward. The fact is, happiness is not really what or where we think it is. The book describes what science has to tell us about the uniquely human endeavor to envision the future, and how likely we are to enjoy it when we get there.
So, get out there and start stumbling.
The Daily Show
This summer, most weekday mornings start with me stopping at the hospital for a CBC to see just how low my platelets are despite transfusion. I have The Kid in tow because after I get stuck and develop a new bruise (I look like a heroine addict at this point), I bring The Kid to day camp. After dropping said Kid at day camp, I hop in the car to drive to work and invariably receive a call from my oncologist saying I need to come in and get platelets. For those of you counting, and I truly don't know why you would be because I am most certainly not, my estimate is at least 15 transfusions in the past six week.
I then go into the office, plow through my e-mails and try to figure out just how out of touch and behind schedule I am. I'll get what I can done until about noon, when I drive up to Westchester for the platelets. Fully infused, I turn around and drive an hour-and-a-half (barring traffic and accidents) back to my office, arriving about 4:00 p.m., where I put in a few more hours and get home about 8:00 p.m. I crash, and start all over again the next day.
The Platelet Puzzle
After discovering that prednisone is apparently not doing a damn thing, my oncologist starts weaning me off and moves on to Plan B, the aforementioned IV Ig. After my insurance company drags its heels, and Ellen, the pit bull of patient advocacy in my oncologist's office has her way with the dimwits at the insurance company, I receive an enormous cooler of IV Ig within a few days. I started treatment last Tuesday, the 7th.
I returned to my oncologist's office on Thursday the 9th. Wait, let me stop here. Because, I don't know if you've been wondering how much I'm blowing on gas for all my NJ/NY gallivanting, but I sure have been. So, I tallied up. Fuel expenditures from July 7 through August 7 comes to $425.05. Yeah. Soak that one in. And, no, I do not drive an SUV or otherwise gas-guzzling monstrosity.
OK, back to Thursday at the oncologist's office. I spend the drive up trying on different scenarios of what the outcome of my first treatment could be. Maybe I've taken a major spike up. That would be the ultimate. Or, I could see a small, but definite increase that signifies things are turning around. That works for me, too. Or, I'm stable. That would suck. But, again, could signify that things are turning around, only more slowly than I'd like. Let's not forget -- I am trying to get to the UK on the 21st. The thought of my count completely tanking eludes me completely. Too bad, that, because that's precisely what it did. One platelet. One.
At this point, I believe I've found the end of the rope. The UK is quickly slipping through my fingers and I am finally starting to acknowledge the fact. Devastated. That's pretty much the word for it. I am infused with IV Ig and sent off for more platelets. I leave with 23. Not great, but whatever. At this point, I am too weary over this to care. I also leave with the knowledge that I will likely be back again the next day because, if the pattern developed over the last month is any indication, my platelets will have dropped overnight and my oncologist will not let me through the weekend without at least a passing level of platelets.
Sure enough, I've got 8 on Friday. Refer back to The Daily Show heading for how the day goes. At least, up until the part where I get to the office.
This is when I learn my oncologist has called what my nurse practitioner calls a "Platelet Guru" for some guidance. For the record, I am not calling him a Platelet Guru until some demonstrable guru-like results pour forth from him.
Anyway, Guru Dude wants me back on the prednisone. 60 mg a day to be precise. Which, as we all may or may not recall, is where I started this whole merry-go-round. So, (And this is where it gets really, really good. So pay attention.) being the intelligent and responsible patient that I am, I pull out my ever-present bottle of prednisone and look at the directions to make sure I am dosing correctly. Because we all know how important proper dosing is. Instructions are "Take two tablets once a day." Got that part? Good. Now, for some godunknown reason, I decide to check out what size tablets I have been prescribed. (I don't know about you, but I'm guessing 30 mg.) After several seconds of searching the label for the dose, I finally see it: 5 mg. What the F!
I am on the phone to my nurse practitioner in an instant. As you can imagine, I am also beyond livid. I have not been at a therapeutic dose since this utterly ridiculous and, let's not forget, life-threatening situation started over a month ago. The way I see it, I may as well have been taking Pez. This realization shoots my thoughts in multiple directions -- Who the hell do I kill? I may not see the UK and it's because someone made a mistake? I've been in a precarious and dangerous health situation and pretty much not receiving treatment for it for a month? Will this discovery finally make the difference and get me to the UK?
God. I don't know. I just don't know.
What I do know, is that I couldn't have made it through Friday had it not been for Dear Friend, who blew one of her two summer half-days to drive my sorry self, in the rain, up to Westchester for platelets. I just couldn't do it myself. My head was pounding from the strain of the past month and my newly acquired knowledge. I felt terrible taking help, as per usual. I'm trying to assuage myself by ascribing Dear Friend's selfless act to her not-so-hidden desire to give my car a test drive. Hey, I do what I have to do.
Friday, July 27, 2007
I was actually feeling pretty optimistic about getting back to the office early in the afternoon and cranking through some things that needed to get done. That optimism lasted about 15 minutes. 'Cause that's when I got to the aftermath of this. Good intentions averted.
I also got confirmation today that the previously mentioned Prosorba Column is indeed no longer available. I am to return to my oncologist's office on Monday to discuss IV Ig therapy. I don't feel like doing the research now. So, go ahead and do it yourself if you can't wait. Perhaps start here. Let me know what you find out.
Finally, this has had me and several colleagues with similarly sophomoric senses of humor cracking up this week. Yes, we are that highbrow.
Wednesday, July 25, 2007
A bottle of Cabernet.
Harry Potter and the Deathly Hallows.
I also had a conversation with my oncologist. He got the results of my antiplatelet antibody test back, and they show that I am indeed making an antibody against my platelets. Stupid, treacherous body. His recommendation is to have a Prosorba Column to filter my blood and get rid of the antibodies. Now I'm trying to find someplace in this state that does it. If Wikipedia is to be believed, and yes, that is the latest, most seemingly accurate and relevant information I have been able to find thus far on this treatment, this device isn't even produced anymore. But, I don't know if that means that facilities that have it can still do it, or if there are super-special accoutrements that are needed in order to utilize the device which are also unavailable.
Further, I asked my oncologist how confident he was that this is the only thing that is acting upon my platelets. He said he wasn't 100 percent confident, but is pleased that we now have something to take action against. Fine. I suspected that he wasn't completely convinced that this is the sole issue, and I am always down with action plans. So, we'll roll with this for now.
On a completely different note, on my drives up to New York and back, I received appreciative honks (I'm interpreting them as appreciative and I don't care what you think) from half-a-dozen long-haul truckers. Which proves one thing: If I wear a dress, and am traveling fast enough past a bored and lonely man, I am still perceived as attractive. At least to six of them, anyway.
Tuesday, July 24, 2007
Come on now, people! How on earth can whatever air is wafting around the confines of your car be even remotely close to as refreshing as the air that dances through farm meadows and dodges among the woods where we live. OPEN THE DAMN WINDOWS! Fresh hay, smoky fires and plain old, under-appreciated fresh air are there for you to inhale and savor. A breeze is waiting to kiss your face and give your hair a messy shuffle.
You are missing it.
By the way: Car dancing is highly encouraged to further enhance your open-windowed driving experience.
Monday, July 23, 2007
But, as befitting a woman who chooses to live her life despite the diagnosis, our conference call leader was otherwise engaged and forgot to phone in, so our call did not come together as planned. I, myself, was late calling in because things other than cancer needed my attention.
My Beautiful Eight/Call Leader friend phoned to apologize (as if that was necessary) and though I was happy to hear from her I could hear the strain, weariness and fear in her voice. Bone mets that require daily radiation, progression in previously identified sites, and a new systemic therapy are beating on her. As is her job and her relentless dedication to caring for her family. She's a mom with two small boys. Would you expect anything else? Such drive. Such devotion. Such precariousness.
It's frustrating and painful in its familiarity. Living with it. It's harder than you know.
Sunday, July 22, 2007
- Relished in a morning horseback ride through the Hunterdon County countryside with The Kid, who was on his first trail ride, and Dear Friend, who is always up for an adventure in simple pleasures.
- Found a shoe repair store, right in town of all places, and dropped off my favorite, though seemly cursed sandals to be repaired. Again.
- Took The Kid to see Harry Potter and the Order of the Phoenix. OK, fine. I wanted to see the movie and needed a co-conspirator. Thankfully, he's a willing participant in his mother's scheming.
- Picked up Harry Potter and the Deathly Hallows, started devouring it curled up on my couch while sipping on Cabernet and enjoyed the summer breezes breezing through my windows.
- Cheered as My Darling Husband and The Kid -- Team Hill -- ran a 5K and was rewarded with another great opportunity to be proud of my boys. Oh, The Kid took third place in his age group. YIPPEE!
Friday, July 20, 2007
Platelet count on Friday, July 20: 13
Analysis and action items: Platelets are on the rise for the first time in approximately six weeks! No transfusion. CBC to be repeated on Monday, July 23.
Prednisone level: 60 mg daily
Prednisone-induced food cravings satisfied yesterday: guacamole, pizza, macaroni salad, chocolate chip cookies
Weight gain since initiation of Prednisone therapy: Five pounds