I haven't blogged in almost a year. I've been living my life... feeling and behaving healthy. This little cancer interruption has been shoved to the back of my mind. Even with bi-monthly treatments at Memorial Sloan Kettering and quarterly CT Scans ... it's all just a task that I must check off like paying taxes or speeding tickets.
Today, I finally felt inspired to blog. I just spent over 2 hours on the phone attempting to confirm a stupid CT Scan appointment. Over 2 hours mostly on hold with 4 people at 4 different locations and departments...just to confirm an appointment my oncologist prescribed for a stupid scan at the same hospital I've been going to for a year.
I pay a fortune for the insurance I have. It's an astounding $600 a month plus co-pays and treatment costs. It's an unbelievable amount of money that I will NEVER pay in full. (That is both a threat and a promise!)
I don't begin to understand health care reform. I truly don't have any clue as to what potential changes to my health care will be affected in regards to my treatment or my financially responsibilities. I also don't know what happens to the system with reform. Will it be easier to manage? What I do know is this. Our current system sucks! Not just the arbitrary legal shoveling of pharmaceuticals down peoples throats, and the over charging insurance mark up big business creating money grubbing slimy bastards. But the inefficiency of the system.
Be it a HMO or a PPO it's all WTF. Either way you spend your time calling and referring and getting authorization codes and case numbers it's a waist of time and money. The astounding inefficiency of such an enormous monopoly is blasphemy. If it were a normal corporation it would have gone under... customers would have complained and stopped using them. This isn't news, I know you already know this, I know I already know this but all the crazy revolution in Egypt just keeps reminding me that we are a bunch of do nothings who sit around waiting for the world to change. I for certain am the pied piper of apathy. But, today I'm fired up.
Changes must be made ... I have no clue as to what they are.. but if you have read this far along ...I appreciate you hearing me out and I now feel better.
What I do know is how we can all help within this labyrinth of ridiculousness. If you have a friend or relative who is sick. Offer to help schedule appointments or organize their bills or medications. Food, cards, gifts and loving words of support are fabulous ..but the time sucking, paper-work needing health care system is enough to make anyone say screw it to the meds and appointments and just give up.
I'm healthy, happy and am graced with the ability to function with an extraordinary amount of denial and procrastination ...so managing this crap isn't too difficult for me. But some patients like to pay their bills on time and like taking the correct dosage of medications at the correct time ..it's those people I feel really bad for right now. I can't imagine being truly sick and having to deal with these complications. So maybe we can't fix the huge problem but we can all lend a hand in fixing our friends and families little problems.
Thanks for hearing me out. I Hope I riled someone I know to go fix the health care problem. Now I feel better and have to go watch the Real Housewives reunion show.
p.s. ...let me just add.. that I have cherished the support and love in all the means friends and family have bestowed on me. I don't think I would be feeling as good as I do if not for the heartfelt cards, food, gifts, thoughts and love. Thank you.
Rituximab Treatment Day 1 of 12 ( Every 8 weeks for 24 months )
It's called Rituxin "maintenance" this treatment. I describe it to people like this:
Chemo to me is the equivalent of getting Tented - the procedure exterminators do when your house has termites. You tent the entire house and blast the shit out of it with heavy duty chemicals until all the termites are dead.
Tenting = Chemo
But, just like with termites, cancer cells don't go away forever.. so then you schedule maintenance. The exterminator comes around and spray's your house every couple of weeks to keep the termites dead. Monthly termite spray = Rituxin Maintenance
They say this maintenance regimen should buy me at least 5-7 years of cancer-less existence without the need for more chemo. Fingers crossed!
My "spraying" yesterday, wasn't so bad at all. It was an 8am appointment to get my blood work and see my Oncologist. I was checked in for chemo by 10a and was in my favorite chemo room, and had my favorite nurse Joy, by 11:30. I slept through most of it.. Joy eased the needle into my port gave me 50mg of Benedryl a Blanket, pillow and within about 25 mins. of watching Weeds Season 3 on my laptop.... I was sound a sleep in my chemo chair.Woke up 2 hours later, with 30mins left of the drip and I was out of Sloan Kettering by 2pm.
Very glad to have the first treatment over with. I had heard it wasn't difficult and that there were minimal (if any) side effects, but didn't believe it until I witnessed it for myself. Rituxin on it's own is a breeze... everyone was right.
Knowing you have a type of cancer, going to Sloan Kettering, waisting a day in a chemo chair, getting blood tests, meeting with a fertility specialist... that stuff mentally challenging. But, the R-maintenance chemo. Not a problem.
The Benedryl then kept me a sleep and high for the remainder of the day. I slept on Ali's couch until 7:15p. Was at We Unite for Haiti/Emma's show by 8p. The show was amazing.
The 5 guys cheeseburger and fries afterwords was almost as amazing.
Hello. It's been a few weeks since my last post...and from what I can tell, I've been missed a little bit...which is lovely. I am humbled by the curiosity and genuine concern.
There really hasn't been much to report, except that I have some hair and I feel pretty good.
So, here we are.. a month or so later with lots of good news, lots of change.. and from what I can gather of my own psyche.. a much needed respite from all things cancer.
R-CHOP Chemo is over, my scans are good. I have been given the choice to either receive Rituxin maintenance every 8 weeks for the next 2 years or try Zevelin which is a radioimmunotherapy that one can only receive once in a lifetime.
I've chosen R-maintenance and my first injection is on March 4th. They say this treatment is easy to manage and not such a great imposition on your life...and certainly every 8 weeks is manageable.
Other than processing that, I have been focused on just living my life. Having fun, pretending that things are normal and watching my hair grow.
<3
I'm in shock and speechless..
I get that I'm writing, but I'm truly at a loss. I've just woken up to find a post on facebook from my friend Gary's wife that he passed away this morning. Her and I became facebook friends this past week while Gary was in ICU.
Gary was diagnosed with Peripheral T-cell Lymphoma, lives in florida, with a 2 year old son Mikey and a smart, funny, beautiful supportive wife Samantha.
I met Gary through Twitter. aka Gary my Lymphoma Twitter Buddy.
On May 5th, I got a call from my Surgeon with the full results of my biopsy, and a definition of exactly what type of Lymphoma I have. That evening I went online searching like a bandit for as much information on B Cell/Follicular Lymphoma I could find. From wikipedia and WebMD to lymphomanation. Searching for answers like it was the night before a term paper was due. I wanted an A in Lymphoma 101.
I read and bookmarked tons of medical jargon. Then continued my searches on Facebook and Twitter for support groups and meeting fellow cancer patients. I did a search on Twitter... tons of tweets from patients to organizations came up..but the very first tweet at exactly the same time as I did my search was this:
Then as the shit got deeper we switched to twitter email, then private email, and then it evolved to our savior Instant Messenger.
In real time, back n' forth we had each other to bounce the incessant amounts of information coming at us like a freight train. Every ounce of fear, and positivity muddled in short sentences and quick blasts - furiously cursing and expressing ourselves for hours at a time..all day via instant messenger while at work. Complete strangers, but for that time our biggest support systems.
If one of us had a Dr.'s visit, scan or interaction with someone ...we understood completely. We would say often .."I'm glad you "get" what I'm talking about or .. eh.. this sucks I know at least "you get it".
Gary was told he was starting chemo about a month before I did. We were IM'ing all the time, before his first treatment. I like to think I helped him as the days/hours grew closer. It was just so scary...we read about all the side effects and possible outcomes of treatment. He got through it all like a champ and was there for me when my time came.
When I was told by my first oncologist that Watch n' Wait was a recommended course of 'treatment'... I was confused and frustrated and a total mess. I was very uncomfortable with this guy as my oncologist and Gary thought the guy was an ass.
When I got a 2nd opinion and met my current oncologist and was told I was to start chemo, I was crushed, terrified...and relieved. I texted Gary after leaving the appointment at Sloan. Gary totally 'got it'...and his words were the perfect support.
Gary and I talked a lot about our treatment options.. It was all so confusing..but easier to manage with his support.
Gary was my blog influence .. he had his blog before his diagnosis and bit by bit he blogged more about his cancer experiences. Now it's a full on T-cell Lymphoma chart of his journey. (here's a post he wrote early on about our friendship and dealing with situations).
I took his cue and began my blog. At first I thought it would be private..but he and I talked a lot about being open and sharing our experiences with everyone. I was impressed by his openness and freedom to talk about whatever was on his mind. We were definitely kindred spirits in that way. I'm not sure I would have had the balls to make my blog visible, rock my bald head or even talk about my Lymphoma on facebook if it weren't for him. Here's an example of his encouraging words.
Gary's chemo ended up being far more intense than mine, he had a shit storm of debilitating side effects and a constant bombardment of new treatments because of them. Plus, to top it all off..he and his wife flew from Florida to NIH in Maryland every other week for his treatments. His entire life was interrupted.
It was huge to have Gary during that time in the beginning..and I've missed getting to talk to him. Our Instant Messaging conversations ended once the hell of chemo began. For both of us our brains just didn't click into gear like before. I've always been able to chat online, talk on the phone and listen to conversations around me all at the same time. Throughout chemo and sadly still... my multi-tasking is just not what it used to be. Gary had the same issues. Plus, his neuropothy in his hands was starting to really bother him. As the past few months went by, we tried talking on the phone a few times, but I didn't want to burden him with my stuff.. and I think he felt the same.
We relied mostly on facebook and blog updates with a few text messages now and again...cheering each other on.
A few weeks after his chemo ended and I was in my 5th treatment, we agreed that when my chemo was over we'd talk more. My chemo ended and then he took a turn for the worse and had brutal side effects from his last treatment.
The past few weeks Gary's updates have been filled with high's and low's. The joy of Christmas with his son.. then mentions of complications with his last treatment. Then last week Sam, Gary's wife friend-ed me on facebook. Her updates were alerting everyone that Gary was in ICU and his oygen levels were bad. He needed platelettes and things weren't good. ... I never in a million years would have thought that he would die from all of this (at least not so soon). We planned to battle this fucked up mess of a situation.. for years to come. We talked about him and his family coming to NY staying with me and doing fun stuff on the North Fork and NYC... and me coming to visit them and going to Disney World together.
Selfishly, I will never really get to know him and I can't help but wonder how this is going to effect me and the way I process my own shit storm of treatments ahead. We both thought that once this leg of the journey was over... we'd have plenty of time to chat again and share our war stories. I wish I had him to talk to..
MrPixar
we'll just have to stick together I guess. Yes, this sucks big swamp ass but what can we do at this point? Either fight it, or don't and die
7:09 PM May 18th, 2009
Gary was a fighter. He made tough decisions when it came to his treatment, always believing that he had to live and would endure whatever they poked, prodded or chemically juiced him up with. When his spirits were low he tried with all his might to be positive..and when he couldn't be positive for himself, he'd say "i'm here for you kid" ..."whenever you want to talk". Transferring his strength to me.
I have no idea how to end this post... I don't want to stop thinking of him and I feel like when I stop typing I will forget .... although I am reassured to know that I will always have his blog, facebook and twitter pages to refer to. This odd and wonderful new technology that brought us together gives us a bevvy of conversations to re-read again and again. We never met in person.. but he was great friend.
My results are good, chemo is definitely working!! YAY!
The results of the scans, were 1 of 3 alternatives: watch & wait, Rituxin, or Zevelin.
I knew that at this stage of the game, I didn't want Zevelin.
Unless my scans proved to be shitty, Zevelin as far as I'm concerned, is my first Hail Mary. It can only be given once, because it screws up your bone marrow. Plus, the side effects are heavy.
I was hoping he'd say that I'd be in watch n' wait ... I'm a sucker for procrastinating and that seemed to be the best protocol.
Alas, I got door number two. I'll have to go on Rituxin maintenance. So every 8 weeks for the next 2 years. I'll have to go to Sloan and still get the one chemo drug. Blech!
It was a nerve wracking week or more waiting for the results. I was supposed to come into the city the night before but just couldn't wrap my mind around having fun and being around people so I stayed home in bed. As usual I took the morning jitney into the city.
Ali is away, so this time Sharon met up with Mom and I at Sloan.
After meeting with the Oncologist we had a delicious dinner at Four Seasons and then I hung out with Sage & Emma at the Blocks. Nothing like a delicious dinner with my mom and sister, then spending time with my nieces to get my mind off reality. I'm lucky to have them around.
Rituximab Maintenance has been standard procedure post R-CHOP chemotherapy for the past few years. Rituxin is the R of the R-CHOP chemo.
They say, two years of maintenance therapy with rituximab dramatically improves the chances of survival for patients suffering from one of the most frequent forms of lymphoma, indolent non-Hodgkin's Lymphoma (NHL).
Certainly not the worst news a cancer patient can hear.. and I've heard Rituxin isn't that difficult to bear and the side effects aren't that bad.
But, it still sucks all the same. The thought of this damn port staying in me another two years, and having to go back to Sloan as a reminder that I do have cancer is just a total pain in the ass.
But again... it's also awesome. The out come of the scans could be far worse.
I'm lucky, happy and feeling pretty good. As soon as my hair grows back I'll look as good as I feel.
Scan day - Dec. 15
I scheduled the scans for Tuesday 15th because I had a board meeting on Monday 14th ..so I came into the city Sunday 13th. I had my first feeling good and normal days in the city for months. I got to stay at Ali's new apartment and not feel like crap... it was a great couple of days.
Sunday night I arrived to the city in the pouring rain. The jitney left me off a few blocks from Ali's apartment..but it felt like miles in the down pour. I was wearing the wrong coat, forgot an umbrella and had all sorts of bags - work, computer, luggage and a birthday gift for sage. I arrived to Ali's apartment like a drowned rat. Fixed myself up and got into a cab to see the Blocks and give Sage her Birthday present. I had dinner and hung out with them and then went back to Ali's.
I had breakfast with Lynn the following morning.. then went to the board meeting. Full of energy and still going strong I gathered up friends; Joanna, Lynn, Lisa and Alison for dinner and drinks at the Oyster Bar in Grand Central. We had cocktails and great food and not once did I feel like I wanted to pass out or ponder sitting on the couches nearby. I sat in a stool the entire time. Whoo hoo.
My first real cocktails in months.. I felt great.
The next morning was Scan Day. Ali and I woke up on time for my appointment..for now on I will try to stay in the city the morning before appointments. We got ready and Ali sweetly asked if I would like some coffee.. I said sure. Then she kindly asked if I wanted a banana. I said sure. While waiting for the elevator Ali asked if I wanted a cookie.. I said sure. We hopped on the subway and were at my appointment within 15 minutes. 8:00am ..right on time.
As I started filling out my paper work I realized. I don't think I should have eaten?
"Ali.. I think was supposed to not eat at least 6 hours before my scans" Ali looked at me partly with fear.. and partly like I'm a complete idiot.
I let the fantastic nurses at the check in area, know of my stupidity.. they looked at me like I was a moron and said I probably will have to come back another day. But somehow, I made them laugh and mentioned that I live 2 hours out of the city and if they could get me in today it would be great. After waiting a while .. they squeezed me into the schedule for 12:30 if I pass the glucose test.
Ali and I then had 4 hours to kill. It was a Tuesday so museums were closed. I wasn't allowed to eat.. so for a while we were stymied with what to do at 8:30am on the upper east side. Ali suggested pedicures. It was the most brilliant suggestion ever. Directly accross the street was a good looking, clean, big nail salon. We spent 3 hours getting spa pedicures and then back massages. It was a lovely way to spend a morning.
At 12, we went back up for my glucose test, I passed. The scans were uneventful. Completely different from the previous two times. My first PET scan experience was a nightmare. The second .. just miserable. This time.. it was fine. The place is clean and comfortable and brand spanking new. The nurses and staff couldn't be more kind, and I feel secure that they know what the hell they're doing. Plus, the scan machine does both the CT & PET scans at the same time.. a major technological innovation as far as I'm concerned. Yay..technology!
The procedure happens like this:
First, you drink the red contrast solution. It's certainly not my beverage of choice but it's not bad at all, they mix it with crystal light so it tastes pretty much like..crystal light. You just have to drink a lot of it...which in turn makes you pee a lot. Then they inject you... (for me I get injected into my port) with radioactive antibodies. This tends to make me feel very light headed and I get those flashing light things in my eyes. All the symptoms of getting a migraine..but I don't get the migraine and now I'm so used to it all that I don't get freaked out. So that's a plus. It's strange knowing that you are radioactive and being told not to go near pregnant women, airplanes, buildings with radioactive security, and small animals or children is daunting..but you gotta do what you gotta do.
After the injection, you sit in a closed room for about an hour and half.. drinking the solution and letting the I V of radioactive shit seep into your body.
Then they take you in the very cold scan room, you lie down.. and for about an hour you slide into a tube and get scanned. I tend to freak out a little bit for this part. I was never claustrophobic before.. but now.. sliding into the scan tube totally freaks me out. I am able to calm myself down, but I know now that it has to be on my time when I'm ready to get slid in there. Knowing that if I stop the scans in middle, they have to start all over ..is what keeps me inside.
This time in the tube, I hummed the song Brandy over and over.
With my eyes closed, quietly I sang and thought hard about getting out of that tube - it was like this...♫♫♪♫ brandy is a fine girl what a good wife she would be♫♫♪♫..when will this be over...how long has it been at least 7 minutes ..I open my eyes and look at the timer 45 seconds have gone by..I close my eyes ..♫♫♪she walks through a silent town and loves a man♫♫♪♫... ok atleast 5 minutes past it has to be over soon... I look at the timer.. 60 seconds have gone by and still 17 minutes left. What got me through the next 17 minutes was thinking about the night Julie and I drove Kim's old MG from Hollywood to Santa Monica along Sunset Blvd. singing (screaming) Brandy at the top of our lungs.
Finally, the scans are over. I'm not to queezy. Not feeling great.. but not awful at all. Certainly not like the first time I had a PET Scan. Ali and I go for lunch at the Italian restaurant accross the street. The food was delicious. We share two pasta dishes and a salad. We couldn't' be happier. It's now 4:30p I'm feeling ok, and we've got the rest of the day.. it feels like a vacation.
We've both got places we want to go and amazingly they are just blocks from each other. It's comfortable weather for mid December so we walk across town to Rockefeller Center. Ali needs a bag at the Museum of Modern Art store we take our time throughout the store and look at everything, I'm feeling pretty good. Ali get's her bag and then we walk to Anthropologie.
We tolerate the crowds outside and check out the Christmas tree and ice skaters in Rockefeller plaza. My favorite store and it's in 30 Rock, we thought about going to "top of the rock" but gladly decided not to. We submerge into the fantastic, eclectic, inspiring, decor of Anthropoligie. My spirit is ignited and we wander around the store. After a half hour in the store, I'm beat. The excitement of being in Anthropologie combined with exhaustion, heat and battling holiday shoppers and tourists, I feel like I'm about to pass out.
Miraculously, I find an empty chair just outside the clearance section and sit, while Ali dips in/out of the clearance room filled with clothes. She dives in..picks out some things and emerges with stuff for both of us. I can see into the room..so I'll direct her "Ali the white sweater hanging on the top right see if they have my size" she emerges with the sweater. She's awesome! We try them on.. then she dives back into the packed room again.. I can't tell if there are more clothes or women in that room.
I get a 2nd wind, and we make it up stairs to the long check out line...we're done. The day was great but I am extremely tired. We get out of the building, hop into a cab and discussing dinner the whole way. We're not back into the apartment 10 minutes before we are both in pajamas. Neither of us could think of cooking. I could have fallen a sleep as soon as I walked in the door... it was only 7:30p ..and Lynn was coming over at 9:30p ..so we stayed awake. Lynn brought over ice cream (a delicious and fine dinner) we chatted and then I passed out.
Scan day.. turned out to be one of the most relaxing and fun day's with my sister ever.. with icky scan's slipped in the middle.
Hello my little blogosphere... I've taken a break from writing the past few weeks.
At first it was to collect my thoughts about the end of chemo. Then I didn't know what to say or where to focus. Then it evolved into avoidance and procrastination... I'm pretty sure I just haven't wanted to think about 'cancer' or anything having to do with it ... and then.. it was holiday time and time has been an issue.
To wrap up the past few weeks.. I had my last chemo treatment on Nov. 19. It went on without any new symptoms or difficulties ..except for intense hot flashes and major tiredness and discomfort.
The side effects carried on during all the Thanksgiving hub bub and I am thankful my family was around me and we had a lovely Thanksgiving. I spent much of it reclined.. but it was wonderful to have everyone together.
Next was my Birthday and party hub bub... and even with extreme exhaustion I pushed myself and had a fantastic time. Sadly, my brother in law's father took a turn and they weren't around for the party ...but I had a super fun birthday. The best in years.
Before I knew it, it was December and the looming date of Dec. 15 hung over my head as I awaited my next PET Scan and CT Scan to determine my well being. I started feeling much better and 'normal' by the time scan day came around.. I had almost forgotten I had cancer.
If it weren't for my bald head, lack of eyebrows and strange random fatigue. You would never know the torture I had endured over the past 6 months. It all seems like a bad dream now.
I must admit that when a woman complained of a hot flash before, I wasn't the most compassionate. It's a difficult situation to register if you've never experienced it. But I am here to tell you that the next time the lady on line at the bank, your aunt, or someone you see on the bus is wearing a tank top and sweating while it's 40 degrees out .. give that woman a knowing look of love just as if she's told you her computer crashed or she's got a horrible tooth ache.
Hot Flashes, while not the worst thing in the world ...just suck. They are uncomfortable, unbearable, confusing, distracting, consuming, intrusions.
I've been having my bouts with them throughout the past few months. What began as an irritation in my sleep, are now waves of heat coming over me a few times a day.
the chemo is suppusodedly working. I know this becaue I was told by my highly acclaimed Oncologist. I know this because he said the pain that I had in my ribs a few weeks a go was the chemo working to eat away at the cancer. The pain is my bones deteriorating to then be regenerated.
Today, my back hurts. Not like a normal hurt when you have a bad bed. That's a pain I've been feeling for months. This is the same pain I had in my ribs. Various spots along my spine, shoulders and lower back are like hot spots of pain. It hurts.
My first thought is to rub it out like a normal back pain.. but the thought of rubbing it makes me think that somehow in my kookyness ... I will rub the cancer around and it will find someplace else to hurt me.
So to me it's like a splinter, it's annoying. You want to take it out.. but it hurts more after you fuss with it and finally get that little piece of wood out of your skin.
I had hoped this next post would be a light and happy one. But sorry folks.
Phase 1: R-CHOP chemotherapy is over. I am relieved and thankful...that's good news.
However, I learned that contrary to what I was told on my 4th chemo visit... the 3 month reprieve from tests, scans and oncologist visits is now only 1 month.
Then Phase 2 will commence.
Which includes 3 options:
1. Watch n' Wait - a standard protocol of waiting to see when the shoe drops an we do nothing.
2. Rituximab maintenance: This single agent chemo is the new thing (since 1996) that is supposed to reduce, or halt for a time (5-7 years) following R-CHOP treatment. However, in most cases the cancer comes back, and may or may not be treated again. This would be given every 3 weeks for potentially the next 2 years.
3. Radioimmunotherapy = Zevalin: This is a one time, 2 course treatment that is a slightly radioactive anitbody. From what I've read this is a much newer (2004) option... so outcome does not seem to be known as well, trials prove very positive though.
It's all up to the Oncologist.
The next lovely news I heard before my final chemotherapy uncomfortableness was.. the hot flashes and night sweats are now not just reactions to the meds but I'm in full blown menapause. Not the best birthday present just a week before turning 42. I knew this was a possibility ...that the chemo would cause this to happen as a permanent side affect. I'm sure there's more to come in terms of inner destruction and ciaos that I should be prepared for... but learning the reality that I will definitely not be having children is a heavy heavy blow.
It is silly to think that at 42 the odds would be great, but I did have hope. Those hopes now being dashed have made me pretty sad. I don't regret my life's decisions or choices. They were right. I believe things are as they are meant to be ... I truly don't regret much as I sit here and reassess my life. But the cold reality that I had been given opportunity and chose another path for myself -- if I had known then ..what I know now. I wonder what choices I would have made. When this ball of cancer shit all began I thought about freezing some eggs..just in case. I didn't do it. That was a conscious choice.
I always knew that I wanted children from love, not from need or a want. I never had the desire to have kids from some selfish want. I wanted to do it with a partner and raise a mighty fine person to do good and be something in the world. If I didn't have the foundation for that.. I didn't want the responsibility. Alas, that foundation has not been built for various reasons.. and now. I have cancer and the door is closed. I thought I'd be a good mom, I have always wanted kids. I just didn't want to do it because that's what you are supposed to do. I wanted to do it because it was right. Now knowing that there is the potential for me having a shorter life.. I like to look at it, that I made some good decisions without knowing why.
Who knows what's next. Phase 1 of this shit ass journey is over.
Dec. 23 the Oncologist will tell me all about phase 2.
I had a great weekend. I felt good, I had no plans and I had the desire to do what I love...be alone and putter around the house.
The shakes, sweats and shivers were getting farther a part. I'd do a task then rest.
Hang some pictures.
Sit and watch Food Network.
Rearrange the living room furniture.
Watch 30 Rock.
Clean a toilet.
Check my email.
Bring in the plants .. herbs are nestled in fresh pots on the kitchen counter.
Lay down with the laptop.
Almost none of my outlets have covers on them. Before painting each room, I took them off and threw them away. The outlets and switches have been bare and exposed ever since. I've gotten used to hearing.. "you should really cover those, it's dangerous". Well, you may all rest easier.. most of them are now covered.
Facebook.
For two days... this to me is heaven. Do something. Sit and do almost nothing. Repeat.
Sweep the deck.
Sit on the couch, watch SNL.
Go for a walk with Linda Pasca (the first time I'd left the house in 10 days).
Watch Donut Paradise.
Today is Monday, this morning I woke up from 6 hours of sleep. I was up at 5a.. but it was the best sleep I'd had in weeks. Finally a cup of coffee, a shower and time in my studio.
First time in the studio in a month... I'm very behind and testing the patience of clients and customers. It felt good to get work done and be in my space for 2 hours.
I was at LLK by 8:45a and then work by 9:30a. I was feeling ok, and thought sitting at my desk would be fine. I was completely shocked when at 1p my body started shaking and shivering. I thought the bad stuff had ended. I was feeling good all weekend. I'd do something sit down.. and be able to get up again.
Sitting at my desk working on the computer and talking to Angela and Judy seemed mellow enough, but my body had enough. I couldn't concentrate or focus on anything and it really is pissing me off.
I was home, in bed with 1/2 a xanax by 4pm. It's now 7:45p and I feel exhausted. I'm sure tomorrow will be better.
Just when I thought I was out... they pull me back in. ...
The past week has been Hellacious. Awful. Terrible. Icky and if I am faced with the choice of having to go through chemo again... I'm not sure I can or will. I can't believe I have another treatment and have to endure this again.. and at the same time I'm happy there is only one treatment left to go.
During this intense week, I thought of two life lessons learned from Mel Gibson.
I need to say first that I am not a fan of the Mel. I was suspect of him when I saw people picketing at the 23rd St. theater in Chelsea in 2006. Rumors were that he was a gay bashing numb nut. The next year, I heard from a "hollywood insider" he made derogatory comments about jews during a production meeting.
The following year. He worked with me on a film...(like the way I twisted that around there)
It was during the final weeks of filming The Patriot. It was raining and we were shooting a swamp scene. In a swamp. In the rain. And it was cold. I decided it was a perfect time to clean out an office my boss and I hardly used..and I'd just have to leave the set to go clean it.
Mel overheard me telling my boss where I was going and said something like "you picked a perfect day to HAVE to go clean out the office". I said in return "I'm not as dumb as you look". I laughed. He laughed. I Left the set and went on my merry way to clean out the office.
Hours later I came back to the set. Immediately Mel's assistant tells me that Mel is upset and insulted. He pretty much feels like I've called him stupid.
Holy Crap.. I've upset Mel Gibson!
(In my short film career..I dropped Tom Hank's coffee on him, insulted Mel Gibson and almost lost Cameron Diaz's dog..and those are the things I haven't blocked out)
As the day goes on, people keep coming up to me and saying "i hear you insulted Mel", "so what did you do to upset Mel?". My boss Bill approaches me and sits me down.. "So.. Mel's upset...what did you say"? I explain.. Bill goes back to set without saying much. I am left miserable, sad and contemplating what I will do with the rest of my life. My film career is now ruined because I was sarcastic to Mel Gibson.
The following night is the wrap party and I chose not to enjoy myself. I ruined, what should have been a super fun night by feeling bad.
The next day .. Mel apologized for playing a practical joke on me. He didn't think I'd feel so bad. Ha Ha very funny anti-semite.
The lesson Mel taught me.. Smile and have fun at a party no matter how bad you feel.
I guess I should have learned to not be so sarcastic and be more respectful. But that didn't stick. So... I am having a birthday party on Nov. 28th and no matter how bad I feel after chemo ..I'm going to have a fabulous time!
Thank you Mel.
The other lesson I learned from Mel and his kooky behavior is this. Your body reacts involuntarily to what it does or does not like.
It was a hot day on set and Mel went around asking people to make a fist and hold their arm up (kindof like a heil hitler. uhm...uh...) and say a food they like. He then went around and tried to push your arm down, while you named that food. It's difficult to push your arm down.
Then he tried it with saying a food you don't like. Your arm just flops down.
The lesson learned you ask? If I did this now and said "I don't like chemo". My arm could potentially drop so quickly it might fall off.
In closing.
I do not like Mel Gibson or Chemotherapy and I plan to have a blast at my birthday party!
One more round of chemo Nov. 19th!
Just like every other time, I woke up late for the 6:30am Jitney to Manhattan for chemo. At 5:35a (thanks to the train whistle) I woke from a sound slumber with 25mins. or so to get the bus.
In a foggy morning panic, I gathered the laptop off my bed and packed it. Then, pushed Charlotte awake and got her out of bed. Ran downstairs to let her out. Ran back up stairs to brush my teeth, wash my face and splish splashed a bit of a whore's bath (as my nanny used to call it). Threw on some clothes, applied some mascara to my remaining eye lashes. Then ran back downstairs to let Charlotte back in. Gave her food and her little pill.
Then ran back up stairs to switch my bag and all my gear: laptop, daily journal, meds, tons of useless crap into my 'city' bag. Then ran back downstairs.. got my coat, gathered my things, and hopped into the car at 6:18a. Drove down the street and realized I don't have my wallet.
Turned the car around ran into the house.. searched my 'nofo' bag and looked for the coat I wore yesterday. Realized.. my coat, with my wallet in the pocket, is hanging on a hook at Love Lane Kitchen.
LLK is closed 'til 7a. I have no money.
Got in the car. Thought to myself I'll get on the bus. Worse comes to worse, I'll mail them a check or something. What are they gonna do ..kick me off the bus?
Then turned the car around again.. ran back into the house (6:22a) and grabbed my checkbook.
I was at the bus stop by 6:29a. Parked the car, and the bus pulled up. Now here I am, settled in my seat 6:56a. I've got my jitney muffin and water and I nervously await the awkward conversation with the young floppy haired kid who will come around and ask for my fare. They don't take checks I've just heard him say over the loud speaker. On the computer I've written down my cc #.. we'll see if that will work. If not. I might be doing the rest of this post from the side of the road at exit 50.
It's 7:26 and floppy haired boy took the cc #'s, without the actual card. I'm safely a paid customer of hampton jitney. Now I can eat my muffin, enjoy the ride and contemplate the hell that awaits for the next 2 weeks without another distraction. Bummer. Maybe we'll get a flat tire...fingers crossed.
to clarify ..they are not pajamas or tier two clothing as I like to refer to sweat pants. I put on jeans.
My consolation was.. there was no way I could deal with tying shoes... so as ugly as they may be, I wore my fleece crocs. sinfully ugly...yes. wonderfully comfortable..yes.
So I got dressed, went to work and held my head up for the entire day. There was a point when I when I thought I might pass out.. but I didn't. I remained up right, fully functioning, carrying on conversations and enjoying the entire day.
It's 7pm and I'm about to fall a sleep. I feel sooooo much better!
social media could be a very communicative way of leaving clues behind without being trite and writing the tear stained note.
tips n' tools to leaving a suicide note -the social media way. by jen lew
a tweet: RT @cobain #suicide
facebook status: I <3 painkillers ... bye bye
blog post: see ya losers
As a sign post on farmville: harvest my pumpkins fuckers..i've hung myself
delicious or digg: google wave..guess i'll miss it
kirtsy: girl commits suicide the social media way
the fucking fucked up shitass motherfucking prednisone is the cause of this intense mood shift, or it's lack of sleep, or pain, or eating poorly, or it's that i haven't gotten my period, or it's that i haven't had sex in forever or exercised... or ...or.
a friend told me a horrible story yesterday. the jist of the story is... someone had cancer and they shot themselves during chemo. i fucking get it. i don't plan on doing it. but jesus right now... i fucking get it.. i understand now in so many god damn ways how this fucking bullshit cancer motherfucker can fuck with your head. i have no intent on giving up. but i fucking get it.
i don't want a bunch of you idiots getting all worked up and thinking that i'm going to kill myself ..because i'm not. but the truth is.. at times over the past two days.. it's been enticing. enticing is a creepy word.. when referencing death. but you get my point.
yesterday i found myself asking Greg " wouldn't it be cool if you could get shot, live through it and then survive and be fine"? I was thinking about how shitty I feel. I thought it would be great to die for a little while. I also put a request to both Jenni and Kim to shoot me and get me out of my misery. They both declined.
But greg..being awesome.. said yes. No. I'm kidding...He turned my psychotic question into a conversation and we started talking about poor maryjo buttafuoco ..what a god damn story. That woman pulled herself up. Damn! Greg without knowing it, made me feel better for the rest of the day. If maryjo could get shot in the face ...publicly humilliated by her piece of shit husband ..and live to walk tall and get re-married.. jesus i can go through this shit.
today, tonight.. i'm alone. i'm in bed. everything is just fucking miserable. i've been crying for most of the day. there's nothing anyone can do or say to make me feel better. i am a self loathing, angry, motherfucker.
I feel shitty. my eyes are jittery. there are these little flashes of light..like fireworks that shoot into my eyes. they used to only happen before a migraine. now they are fairly constant. my eyes can't focus on anything. it literaly hurts to look at the computer screen but my head is wired..the fucking god damn prednisone. i'm wired and fatigued at the same time. i can't sit still and the light from the tv hurts so i don't know what the hell to do..so i'm banging away at this fucking keyboard trying to write down all this god damn fucking fucked up shit going through my head. i'm frightened by what i type..but yet i can't stop.
once again ..another night with the laptop on my lap in a dark room waiting for this shit to pass over me, so i can wake up, walk outside and pretend i'm ok with it all.
i'm sweating. the back of my neck is permanently moist.
the front of my brain hurts..like it's being squeezed.
my arms hurt
my fingers hurt
my teeth hurt
my legs hurt
my throat hurts. i sound like a strangled frog.
i can't keep my eyes open when I talk. it's like the two can't work at the same time.
i don't think i can do this again. i don't understand how i can do this again. knowing how this is going to make me feel. how can i go into that god damn hospital let them inject me with all this shit. then take these stupid fucking pills for days. then come down off of all this shit. my body does not like it. some people might be able to handle it..but obviously i can't.
i'm getting pissed. angry. upset. frustrated. i can't imagine if i had to go through this and the oncologist said it wasn't working... how do people do it.
finally i understand the true word SURVIVOR. i didn't understand why I got a survivor t-shirt at the LTN walk. I thought to myself.. "i'm not a survivor.. i'm still in battle.. this war isn't over ..how could i be considered a survivor"?
today i realized it's not the battle of living, you are necessarily a survivor of. It's this gut wrenching, mind blowing, fucked up journey that i'm a survivor of. i'm surviving today.
i survived my first real break down today.. crying like a baby rocking myself to sleep. crying about everything. i took ambien in the middle of the day just to stop myself from crying.
most of all i'm crying about how in the fuck am i going to go through this two more times... and for god sakes.. is it really only 2 more times? i don't know. i hear from all these fucking stupid idiot people "i know so and so who's been in remission for 5 years.. 8 years ... 10 years" fucking great fuck wad. remission from what? what type of cancer did they have? what type of lymphoma?
i mean really.. how fucking dumb can you be to say.. "my friend had cancer... she's fine now.. so you will be too".
shut the fuck up ...idiot.
so.... remission. it lasts for a few years then what? you go through this shit again. jesus now that's a something to look forward to.
i know these feelings will pass. i know i'll feel better in a few days. i know i'll stop stuffing my face with food. i know i'll have sex again. i know i'll laugh, have fun, drink a jameson on the rocks, make plans and keep them, go someplace besides home, work, LLK and Sloan, I know someday soon I'll get dressed up and feel really, really good and have a great time. someday soon I'll need hair gel.
i can't wait to say... yeah.. cancer/chemo happened .. now I....
so i'm not going to kill myself idiots.. i just have no other god damn way of expressing how motherfucking awful i feel.
Ok, while I've just blogged about the Medicine. I am up from another sleepless night and have to get this monstrous fear off my chest. And thanks to you beautiful people reading my blog... I get to dump my fears, joys, gratitude and love onto you at will. So.. here you go people take on my burden for a few minutes. Another post of some heavy shit.
I have to take my prednisone this morning. As I've mentioned ..I've been up for hours..since about 2:45a and it's 6a now. I've been dreading taking it since the first glimmer of being awake.
I'm hungry.. and all I can think about is what I should eat with the prednisone. It tastes bad.. I've mentioned that before.. but it also ruins the flavor of everything else I eat. So the food, the timing and the will power to take the pill all have to be right. Millions of people take this drug.. I know. I am a wimp and being very dramatic about it. I know. I know.
But still ... I want to stamp my feet on the floor and pierce my lips together and refuse to take it.
I am however the one forcing myself to take it... so these attempts at a temper tantrum will be waisted ..unless I video tape it. Ok I'm just procrastinating now.
About a year ago, a friend said she was going on low dose prednisone for her RA. I lost it on her. I have a tendency to get a little passionate and after about 10 mins. of a tirade with me trying to convince her not to be on it.. I looked at her and said.. "oh..I think that's a little displaced.. I blame prednisone for my dad's death" She smiled and said that was different, she wasn't frightened of the stuff at all.. had been on low doses previously and while it was a bit uncomfortable she thinks the medicine works. So I shut up.
I blame the prednisone for my dad's death. It was the prednisone that made him impossible to sew up after surgery. I know this because standing in the hallway of Mt. Sinai after my dad's major colon/bladder/prostate removal.. the surgeon exhausted after hours of intense surgery held up his hands up in the air and said.. "I'm sorry ... the surgery went well..but sewing him up was like sewing up Jell-O... that damn prednisone".
The surgeon my dad loved, walked onto the elevator looking defeated. In all of his despair I new the outlook was shitty.
It's a moment I'll never forget.
Now it's me.. taking 100mg of this crazy crap that makes me irritable, jumpy, jittery, fatigued, constipated, weak, sweaty and constantly on the verge of a migraine. I only take it for 5 days.. for 6 months. It's only 5 days..I should be able to deal with it. But it's after the 5 days of coming down off of it that extend the experience So ..it's 10 days of gross hell. .. I hate it.
It doesn't compare to the almost 8 or so years my dad was on/off it. But I can't help but worry that it won't be me turning to mush inside.
The stuff frightens me, all I think about it is that I'm rotting like a pumpkin in November.
mmmm pumpkin. I'm getting pumpkin pancakes at LLK and throwing a temper tantrum there..least I could do is let my friends watch me make an ass of myself.
If there's video I'll post it later.
It's been day's since I've found out that the chemo is working and killing those nasty little cancer cells. It's good news.. no doubt..very good news. I'm happy..happy doesn't even cover it.
So, I've been left wondering why I haven't hooped and hollered and blogged about this exciting turn of events. Even my mom, in her ever so insightful and subtle way asked me the other day "is there something wrong with the blogs?"
"Yes, mom the blogs are broken .. all of them and the internets". I said. In the lovely tone a forty one year old woman who still acts like she's 14 to the most supportive person in her life... should not muster.
What she meant to say is.."I haven't seen you post anything about your good news". And of course she was right.. it was weird I hadn't blogged about the good news. I'm open and blogging about everything else from poop to heart burn. So what's been the delay?!
It's taken me day's to realize.
I was resentful when the Oncologist told me "the chemo is working" and he reminded me that he thought there was a fantastic chance the chemo could work in the first place. Resentful because I've had a hard time associating all this shit pumped into my body (Chemo and Prednisone) and all it has done to my body, brain, and life for the past few months... as a good thing.
Or as my friends and family have to constantly remind me ..that this shit is MEDICINE it's helping me.
I resent the fact that it's not the cancer making me feel crappy ...it's the medicine. I didn't feel 'sick' before I was diagnosed?! I haven't felt proof that the cancer would kill me. How do I know for sure the lymphoma would kill me? No really? Is this just a ploy to keep my Oncologist in his Gucci loafers?
As I type this, I don't completely believe my own conspiracy theory hooey. But it's a thought that won't leave my head.
I've googled ..I know follicular lymphoma would cause my blood cells to not regenerate and ultimately my support system would break down...yada yada. But I can't help but wonder.. how long would I have.. and what kind of life would I live without this medicine that's making me feel so crappy today, making me miss important events, fun, work, life and potentially causing so much other destruction in the future.
I trust my oncologist... Why would there be a diagnosis and mental and physical pain without the best intent.. but ...There is a but. I can't help it. Lymphoma vs. Medicine. The waging battle in my mind.
Everyone say's this is a 'good cancer to get'. Even on the show Brothers & Sisters Kitty's Oncologist is optimistic but concerned. Kitty even opts for my same treatment..R-CHOP. If you know me, you know I love tv...so sadly, truthfully ...this is comforting.
Outlook is good... at a 50/50 success rate. It's all so confusing to go through this painful, uncomfortable journey without ever a crash, fall, emergency room...climactic cause..for all this effect.
So.. if the medicine is working and the cancer is diminishing it's all a good thing. I know this. I have two more treatments. 2 more months of hairless, jittery, fatigued, gut wrenching, sweaty misery. Then what.. I'm back to normal. All systems go. Clean yourself up, live and move on... forgetaboutit. That's what I've been saying. That's been the plan. Dust yourself off kid-o, this is just a blip on the radar of a long happy life.
I don't know what's in store over the years and I'm appreciating the fabulous care I'm getting from my well dressed, intelligent oncologist and settling into my confusion. So I'm happy.. no...joyful, ecstatic, giddy the chemo is working. I'm ready to move on face whatever comes or knock wood..doesn't come.
But believe me you ...cancer bitch. I'm hip to your wiley ways and if you so much as alter a node or decrease a hemoglobin count. I'm snapping out of this medicine is bad funk and kicking your ass with another round like Tony Montana in the last scene of Scarface.
Medicine. it's some Heavy Shit. But click your heels people this medicine is working.
I'm asked all the time .."how do you feel" or "how does the chemo make you feel" and the answer is.. "do you mean at this very moment" because it all depends on the week, the hour or the minute. Today I feel great, clear headed, full of energy and normal. Tomorrow I get chemo so for the next 2 1/2 weeks or so I'll feel like hell.
Here are the various stages of that hell.
stage 1 - coma
stage 2 - woozy moaning misery
stage 3 - death where are you?
stage 4 - the hangover
stage 5 - normal with a twinge of puppy
stage 6 - uh what.. me cancer?
1 - Coma
Everyone's reactions to chemo are different. I was told that the day after chemo I'd feel good and be able to go to work. Yeah..not so much. I sleep. I barely lift my head. I sleep the entire day.I'm a bit nauseous but the drugs work to combat that.
2 - Woozy moaning misery
I'm a moaner. (i'll leave that open for interpretation and pray that nobody leaves embarrassing comments) I moan a lot during stage 2. I'm miserable I can't breathe, I can't stand up without feeling dizzy. My equilibrium is off and I am fatigued. I get up I try to complete sentences and then I lie down. I'm woozy, not so conscience, my mouth,teeth, hands, arms, feet, legs, knees all hurt... I breathe heavy when I do anything and I moan.
3 - Death where are you?
This stage is new. My first foray into stage 3 was after the last round of chemo.
For about 4 days or more, I felt at certain points during the day that my body was literally eating itself. I don't poop. I am miserable. My hands shake. My body is jittery but the fatigue weigh's heavy. My heart beats like pepe le pew falling in love...if I was a cartoon you'd see it beating out of my chest. I dream of slipping in the tub banging my head a bit too hard and drifting away into a peaceful slumber. So be it.. for these few days that would be better than lying curled up in the fetal position trying to figure out how to turn myself inside out and walk through a car wash to clean the evil drugs out of my system.
4 - The Hangover
The easiest way to explain coming down after those days of hell and wanting to slip in the tub. I feel hungover. That morning after, slow moving, lingering stupidity and inability to process information. That shear pain of existence feeling combined with the knowledge that your brain cells are irreparable but knowing that even though you feel this way ... at some point sooner than later...you will be going back and making yourself feel this way again. The bummer is.. this medically induced hangover is completely void of any fun whatsoever. I much prefer a whiskey, beer, wine or tequilla hangover any day.
5 - Normal with a twinge of puppy.
Feeling normal begins at the tail-end of the hangover stage when I can lift my head, walk outside without my sunglasses and hold a decent conversation.. but after a short while I need to take a nap. I am fully functioning at this point, I have a hard time waking up in the morning and I usually hit the wall and go to bed around 5:30p. I work a full day, hangout with friends then pass out like a puppy.
6 - uh what.. me cancer?
Really, I have cancer but I'm feeling great, full of energy. Nothing can bring me down.. oh wait.. I have chemo tomorrow and then I repeat the whole cycle over again. Hopefully no knew symptoms, side effects or stages will be added to the mix.
How cool. Because of my awesome friends and family I raised over $5000 for the Leukemia Lymphoma Society and was the highest fundraiser at the Light the Night event.
I was invited to speak at the event last night.. I had no idea what I was going to say but wanted to emphasize that this cancer crap doesn't define me.. hopefully I got that point across.
After the event and the walk, my team and I went to Love Lane Kitchen for a delicious and fun dinner. It was a great night..
THANK YOU! THANK YOU! THANK YOU! THANK YOU! to everyone who donated and came out to support me.
Lots of love man.. lot's of love.
a north fork living. matchbox making. social media addicted. reformed city dwelling. x feature film producing. lover of all things creative and witty...and a cancer having, follicular lymphoma battling scardy-cat.
