Susan G. Komen Race for the Cure September 26, 2009 Boston, MA

Wow, long title! It's been a while since I've last posted. I've been busy living life!!! Kids are back to school, radiation is over (yah!!!) and church picnic and fall festival have kept me busy baking. I wanted to report to you the success of the Susan G. Komen Race for the Cure in Boston. What a great day it was!!! As I told you in a previous post, my neighbor Lisa Corti was the team leader for our team MOD S.QU.A.D. - Susan's Queen and Dudes (thank you for the great name Sylvia Mahlebjian). She did an awsome job managing the over 40 participants who ran/walked in this great event. It was such a special day for me to see all my friends and family there in my honor. And, we raised over $4,000 for research into curing breast cancer. Next year it's gonna be bigger than ever!!!

Bracelet

This is a special bracelet my dear friend Christine Kourkounian had made for me. Actually, she had one made for each of us in our little group. We are known as Armenian Desperate Housewives (I know, it's a really corny name). The group meets once a month to catch up on "things". We are supposed to play cards or play a game but basically we just talk - oh, and eat of course! I just love my bracelet!!

It's Been a Long Time!

Sorry folks, it's been a long time since an update. I've been pretty busy getting the kids back to school, doing radiation and working on helping the church kitchen get a permit to serve food to the public. Here's an update:

• I've finished 5 of the 6 1/2 weeks of radiation treatment. I can't wait for it to be over. I'm a little tired but mostly tired of going to the hospital every day. I am going to do a dance when it's finally over!

• I've started medication to help stop a recurrance. It has a lot of side effects but I'm trying to manage them as I have to be on this med for 5 years. It's tough to take but I'm trying to go with the flow and stick with it. I DON'T want a recurrance!!!

• In two weeks from today - September 26th 35 of us will be walking in the Susan G. Komen Race for the Cure in Boston. I'm am so looking forward to it. I can't wait to be with you all. I hope I don't cry through the whole thing. I am VERY touched by all of you with your continuous support. I've never felt so optimistic about life. If you want to participe or to just check it out, here is the link: http://komenmassrace.kintera.org/faf/search/searchTeamPart.asp?ievent=305839&team=3467966.

That's all for now, got to go and make paklava for the church picnic on Sunday the 13th of September. See you soon.

xoxo Susan

Chemo - Treatments 3 and 4

Well, it's been a while since I've posted. I'm not a great blogger (but I'm great at other things!). Treatments 3 and 4 have come and Thank God, gone!!! Ginger was there with me, keeping me company, laughing and observing. I think maybe the chemo room is happy we're gone too. Yes, we were loud, yes I had an allergic reaction everytime, and yes, they don't know how much they're going to miss us! However, my goal is to never go back to that room as a patient! I'm done!!! Now, it's on to radiation treatment. That will start in August. Did you know that I get a tatoo?? Yup, a tatoo. I guess it's to make sure they are radiating the right spot. Do you think they could fashion it into a rose or a daisy? I'll ask!
Oh! BTW, my neighbor Lisa Corti has formed a team to run/walk in the Susan Komen Race for the Cure to be held in Boston on September 26th. Contact her or me if you are interested in being on our team. It should be a great time for a great cause. I hope you will think about joining us!
xoxo Susan

P.S. Lisa's email address is: cortivet@yahoo.com

The Many Hats You Can Wear When You're Bald

Ah, the many hats I wear. Last week my friend Lori came all the from NJ to visit me. We had a lot of laughs reading my diary from when I was a teenager and enjoyed spending a couple of days together. While she was here we took some pictures of me in my new hats. Please enjoy the photos and if you have a hat that you think I would enjoy wearing, send in on over.

Who Wants to be Bald? Join the Club!!

Wow!!!! I got a call the week after my second treatment from my good friend Steve Rosenfeld. He told me that he had something to show me and could he drop over. Yes, of course, please do!! When he got to the door and took off his baseball cap I couldn't believe it! He had shaved his head in the ultimate support of me!! Check out the pictures and don't forget to comment (I hope you are able to make comments, I changed some settings to make it easier).

Two Down Two to Go!

I finished my second treatment on Monday May 18. It went well, just a little reaction to one of the drugs but not anything near as bad as the last time. Mom drove me to the hospital, Ginger stayed and watched over me (made me laugh too) and Simone picked me up and drove me home. A real team effort! While I'm sitting in the recliner hooked up to the iv I'm pretty much out of it. You never know what I'm going to say (well, ok, even when I'm not "out of it" you never know what I'm going to say so you can imagine how bad it could be). Ginger is there to remind me of all that goes on. A few days after the treatment we play the "Do you remember when....." game. I really don't remember much about what went on there in the chemo room but Ginger fills me in. Here are some of the things that happened (according to Ginger) at my second treatment:

• The guy who was really grouchy at my first treatment was there again. He was not as grouchy this time. I woke up to find Ginger in a very pleasant conversation. She could tell you his life story but you'd probaly not be very interested.
• The chemo nurse was mean to me and to Ginger. We don't like her. She wouldn't let Ginger sit in a recliner (even though there were empty one and she wouldn't have taken one from a patient). She also said we talked too much (are you kidding????).
• An old woman shuffled in and brought her lunch in a brown bag (I missed this whole thing). Sounds like a really fascinating story. Sorry to have slept through it.
• When I had a reaction to one of the drugs I jumped up and yelled. I do remember this and no, I'm not embarrased, although I probably should be.
• Ginger bought the formally grouchy guy a bag of chips. Yes, she's definitely going to heaven for her generosity.
• I had to use the "facilities". The nurse and Ginger came into the bathroom to me. According to Ginger I had a lot of liquids to pass. Aren't you glad to know this.
• Ginger got me a salad from the cafeteria down stairs. It was really good and I ate the whole thing. Also, this is when she bought the chips for the formally grouchy guy.

So, now you know the kind of things that go on at chemo camp. I hope you find this information fascinating and maybe even useful in some weird way. Got lots more to tell. I'll update again soon. xoxo Susan

Hair Yesterday, Gone Today

Well, it's gone. It was there yesterday but it's gone today. I'm talking about my hair. I really thought I was going to be one of those people who keep their hair during chemo. You know the 1% of so who have hair that just won't let go. But.... I am not. I went to my hairdresser Angie yesterday who opened her shop for me. She's normally closed on Mondays but I called her and she ran down to meet me there. She cut it really, really short and told me to pull it out by hand. No shaving or buzzing it because it hurts. I got home last night and starting to pull it out by hand. It didn't hurt because it was ready to come right out. I am officially bald (well, except for a few stubborn stragglers). I have a bandana on today. I'm also wearing large hoop earrings. I feel like a pirate. Maybe I'll get an eye patch to complet the look! I do have a wig but it feels big on my now bald head. I got it fitted when I had a huge head of hair - might have been a mistake?? I'll wear it when John takes me out to all those fancy places but I'm probably just going to wear the bandana or a scarf. They're just more comfortable for me. I'll take pictures so those of you who are far away can see the "look". It 's really something to see!!

Surpise from the UPS guy

Yesterday was a really good day. Nick was back to school after a day of rest because of a sore leg (???) and I was home alone. I got lots done, you know the usual for a SAHM (that's stay at home mom for those of you who don't know the lingo) cleaning bathrooms, folding laundry, cooking meal, etc. I went out to do some errands and arrived home at the same time the UPS guy was delivering a package to our house. I should say a HUGE package. Nick got the box from the driver (I think he was hoping it was something for him) and lugged it into the house. What could it be? I'm alway suspicious of packages, especially if I don't know where they came from - what if it's a bomb, or filled with an undentified white powder? Check the return address I told Nick just to be safe. It said, "Thank you for your order". I didn't order anything, what can it be. After a closer look I saw that it came from Suffield, CT and the address was EDM. Ok, now I know. That's my good friend Arlene's family business address - they sell lawnmowers. Great, they're sending me lawn equipment, my next door neighbor Ed must have told them we're not keeping up with the neighborhood. Ok, let's open it and get to work on the lawn. Nick grabbed the scissor and sliced the tape. One, two, three and the box was opened. Suprise!!! No lawn equipment, not even close. The box was filled with presents. LOTS of presents. All wrapped up and glittery. I've taken a picture so you all can see what my good friends in Longmeadow sent to me. Now, if it had been lawn equipment I would have been happy, if it had been just the note I would have been happy. I was just happy that they were thinking of me. I started to cry. Nick looked at me? Why are you crying if you got so many presents he asked??? He's already a typical guy. They just don't get it!!! I want to say thank you to all my friends and family who have been so supportive to me. Whether you call, stop by, ask John how I am, send food or presents it is all SO very appreciated. That's all for now!

xoxo Susan

One week Later.....

One week later you have to return to chemo camp for bloodwork. After all the good stuff has been pumped into you, your system can be a little "off". A few vials of blood will tell. I am happy to report that my white blood cell count was low but not too low so that I needed the dreaded Neulasta shot. This is a shot that stimulates your bone marrow to starting pumping out massive amounts of white blood cells. White blood cells are the guys or maybe I should say the gals that keep infections at bay. We need lots and unfortunately chemo kills them along with the cancer. This shot, from what I hear - and I hear a lot, makes you feel really horrible. You get more flu like symptoms and you have bone pain. So, needless to say I was very happy to learn that I didn't need it. I did have to go walk in hours at the pediatrician with Nick the other day (nothing serious) and I was not delighted to be in a room full of sick kids. There were tons of them, sneezing, whining, crying, coughing, dripping with all kinds of bodily fluids. I had to pull the cancer card and ask to be put in a room away from those little monsters. I would have worn a mask if I had one - people would probably think I was afraid of the swine flu but it probably would have been a good idea. I'm happy to report that I didn't get any infections from the germ infested pediatricians office and I'm feeling much better. Talk to ya soon.

xoxo Susan

Monday's Chemo

I would like to report that monday's chemo was uneventful but I'm sorry to say I cannot. No, Ginger didn't cause a scene (although that could have happened). Everything started out fine. I was in my chemo chair - large recliner in a room of 6 others with morning television blasting in the background. The iv nurse gave me my premedication which includes steroids, anti nausea medication and lots of other goodies. It was also supposed to include benadryl (I guess the doc didn't order it). Premeds went fine. Then the big stuff - Taxotere, the first of the chemo drugs. 8 to 9 % of people are allergic to this drug, me being one of them. It's too bad I or the doc didn't know that before I got the infusion. Drip, drip, drip, then Oh My God, Oh My God, Oh MY God!!!! The allergic reaction started. My chest got tight, my throat started to close up, I couldn't breath, I was sweating and my heart was racing (yes, I thought my defibrillator was going to go off). Ginger called to them immediately and they were on me in two seconds. They stopped the drip and adminstered the bendryl and oxygen and I was saved. Hooray, I was saved!!! I was soooo glad that Mom had left to check on Dad and Ginger was there. What an experience! After I was chock full of benadryl and a rested they started the drip again, very slowly and no reaction. Then it was on to the cytoxin. No problem with that drug. No reaction just plain boring! I was sent home in a benadryl coma and spent the rest of the afternoon relaxing. The next day I woke up with a bright sunburn that was brought on by the steroids. I was nice and rosy for the day! No need for me to go suntanning when you got steroids burning up inside you! That has gone away and now I'm waiting for the other side effects. For those of you who are curious, check in in a couple of days and I'll fill you in. I promise I won't be too graphic! Talk to ya soon! Love, Susan

Chemo Tomorrow

Hi All,
I don't know if you'all (am I suddenly from the south?) know that I will be starting chemotherapy tomorrow April 27th. My surgery went well, but after the intial pathology report came out another test was performed on one my lymph nodes. This test revealed a micrometastis - this is a very small amount of cancer. What it means is that the cancer was starting to move into my lymph nodes and that chemotherapy is necessary. I was disappointed but relieved at the same time. I don't want any of those buggers to be left floating around my body. I want 'em all dead!!! So, tomorrow it is. Mom will be taking me there and Ginger will be keeping me company. Let's just hope they don't ask us to leave! For those of you who know Ginger, when we're together we can be a little "loud". I got my wig ready - Simone and I had a fun time picking it out and although it doesn't look exactly like my real hair, it's pretty nice. I'll take pictures so you can all see how lovely I'm going to look :). Talk to you all soon.

xoxo Susan

I am Cancer Free!!

News Flash!!! I got the call from my surgeon this afternoon. She got the pathology report back from the lab and it is good news! The cancer has not spread to the lymph nodes and no additional surgery is required. This means I am cancer free!!!!!!!! What a great feeling after all these months of worry. I will still have to go through more cancer treatment (maybe chemo and definitely radiation) but I feel like the worst is behind me. Again, I want to thank all of you for your love and support over the past couple of months. It has been difficult to keep positive and knowing that you all are here for me has made a world of difference.

xoxox Susan

Tomorrow is the day!

Ok, I would be lying to you if I told you that I'm not nervous about tomorrow's surgery. I have been able to keep my mind focused on other things but now it is really hitting me. Tomorrow can be life changing. Is it good news or bad news? The unknown is frightening. That being said, I do know two things for sure. One is that I have LOTS and LOTS of friends and family supporting me. This is life changing in itself. I've put myself out there by writing this blog and being so open about the cancer. The response is just amazing. The second thing is that love is all around us (and we don't always realize it or embrace it) and we all should take the opportunity to grab it and hold it close to our hearts because it's all that really matters in this world.
That's all for now. Talk to you all later.

xoxo Susan

Surgery is Scheduled!!!

After a long two months I finally have a surgery date. I decided to stay in the area and get my treatment at Holy Family Hospital. My surgeon is Dr. Paula Muto and I am very confident in her ability to do the best job possible. Surgery date is Friday, March 13th. Now, I am not supersticious but another date would have been better. Oh heck, maybe 13 is lucky? At this point I am just happy to have a date. I will stay one night at Holy Family and will be home on saturday the 14th. I'm already looking forward to being home and I haven't even gone for the surgery! I'm sure all will go well. :) I will talk to you'all soon! xoxo

P.S. Our dear Der Hayr Vartan has broken his ankle and is going into surgery today. Let's all pray that his recovery is swift so he can be back to good health soon!