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.
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.