Cancer is NOT an Option!: October 2009

Once again,thank you does not seem like enough to say to the friends who organized tonight's spaghetti dinner held in honor of our family at Advent Lutheran School. It was alot of fun and I am so incredibly happy that we were here to attend. My family had a wonderful time and we can not thank you enough for all of your hard work, time and heart you put into organizing this event.

I will say that I was very nervous about attending. It seems silly to be nervous to attend an event being held in my honor, with my closest friends and where so many people who care for our family were going to come together. It is just the idea that the event was for us, being held because I have cancer and am going for a transplant, being held to help us financially get through the transplant and fund the living expenses, etc. we will incur. It is the fact that it was for our family which made it difficult, I am sure this is a normal feeling that anyone who experiences something like this feels. I knew that I would be okay once we got there, and I was. We walked in to a beautifully decorated gymnasium and a very relaxed fun environment. It was nice to be able to speak with so many people who came out to support us and say thank you in person. I knew I would be to emotional to speak, but I did get a chance to say thank you to everyone there and let them know how much we appreciate their support, which of course lead to tears.

To my dear friend Carla and her husband Ray, along with countless other wonderful friends organized this dinner for us, and you guys did an awesome job. The fact that you decided to take on the planning and organizing of this dinner for us is something that we can not thank you enough for, to me thank you does not seem like enough to say, but at the same time it says it all. You have helped to ease our minds so much as we head into my transplant journey.

We feel so blessed to have so much support, all around the world we have support and people praying for us, it seems so hard to imagine my story is spreading so far. So many people tell me I am an inspiration to them with my attitude, I sure do not feel that way, I am just trying to handle a very difficult situation the best way I can, and try to provide as normal a life as possible for my children during this not normal time period. I know any one of you would handle it the same exact way. Even though I do not see myself the way others see me, I do hope that I do inspire people, inspire them to be positive and know that cancer is not an option for them either, inspire them to be donors of cord blood, bone marrow and blood to help save lives. Before my diagnosis I did not know what Leukemia was or why it was so important to donate our time to give blood, etc. but I do know and I hope that everyone takes the time out of their busy life to help others this way too.

I have not updated my blog that much lately as I been busy feeling good and staying busy with the kids and getting us ready for our trip. We are leaving for Tampa this Tuesday, I check into the hospital on Thursday to start chemo and radiation. We will be living in Tampa for next 100 days while I am in hospital and then when I come out and am recovering.

I will post lots some photos as I download them from my computer and get in some from everyone else who took some.

Thank you for a wonderful night!!

The Light The Night walk this past weekend was a lot of fun and a big success for Team Russo. Thank you to everyone who participated, I look forward to seeing you next year again. Here are a few photos I snapped of the kids.

Wednesday, October 21, 2009

Team Russo reached it's goal!!

This coming Saturday night is the annual Light The Night walk, and this year Team Russo is walking again and I just found out that we met our team goal of $500, we raised $525 to date! These funds go directly to The Leukemia and Lymphoma Society and to patients directly affected by cancer.

If you are interested in walking with Team Russo, click here.

Way to go Team Russo!!

Sunday, October 18, 2009

Only two words...Thank You!!!!

Tonight I can only think of two words that seem appropriate - Thank You! Today in Rome, New York the Cancer Is Not An Option benefit was held in honor of our family and it was a HUGE success. My Mom and Dad, along with lots of other family, friends and local business owners organized the event and they did an amazing job. They sold tickets for admission, they had over 50 baskets and items that were sold in a silent auction, my cousin Jaimie a massage therapist sold one minute chair massages, the Be The Match registry came and held a donor drive - 79 new donors were added to the registry today, there was food and drinks, music and much more. I wish that our family could have been there in person, but we used Skype and we had a video call where we could see what was going on during the event and talk to a few people. WKTV news was there and they did a story and short video, click here to view a video from the benefit and my Mom explaining why it is so important to be on the national donor registry.

While it is to late to find an adult donor for me as my transplant is approaching soon, it is not to late for thousands of other people who need a donor. Since my relapse in June, between the bone marrow drive that was held here in which 74 donors new donors were registered, and the benefit today where they registered 79 new donors and the numerous family members, friends and friends of friends who ordered online kits, there has been close to 200 new donors added because I have Leukemia. If there was a reason why I was proud to have leukemia, it would be only this reason. So many others were potentially helped due to my sickness, and that is great news in a scary situation. I even saw on the Be The Match regisry website tonight that they are accepting donations of cord blood from newborns, which is what I am going to have as my transplant. I hope that one day it is mandatory if you are not going to save and bank the cord blood for your baby that you donate it and it is saved for those who need life saving transplants.

There are many more things to say to those who helped make this event possible, but the two that still seem most appropriate and sum it all up are THANK YOU! You took your time and ideas and worked together pouring your heart and soul into planning, organizing and fundraising for the past three months and you created a wonderful event and a day in which so many benefited, we can't say it enough - THANK YOU!

I will be sure to post more photos and videos as I receive them. If you have not registered to be a donor yet but would like to, please visit the Be The Match Registry and order your kit online today.

Saturday, October 10, 2009

Surreal...

Surreal is the word I use to describe all of the things going on in my life today. Cancer, bone marrow and cord blood transplant, fundraising, etc. Every day I live my life, leukemia or not, heading to transplant or not, I am living it and it feels like every day life to me now, but to the outside world it is not normal. Every now and then I think about it in different ways or just realize how surreal it is.

For instance it is surreal to walk into your daughters school and while checking her into the computer look down and see a flyer advertising a spaghetti dinner, and see your families photo on the bottom of it. To have a full front page article written about you and your struggle with leukemia and fighting to bring awareness to how important it is to be a bone marrow donor. Yes, there was this article, it was written in the Rome, NY Sentinel and published today, my mom called tonight to read me bits and pieces. I will publish link when it is up online. To go to the transit site and see the appeal letter that was written and being sent out for you. To be out with your family at Lowe's doing a fun kids building activity and have someone compliment your hair and ask where you get it done. The compliment is not surreal, telling her that it is a wig is, and the look on her face, being honest and open about cancer and the effects it has on our life, how it is effecting us, our friends, our families, etc. is all surreal.

Reading this appeal letter written on my behalf, and realizing they are talking about me, totally surreal. As I said I have been living what I am going through and it just seems like a part of my life and we have gotten used to the tests, hospitals, etc. But when put into perspective like below, it just takes it to a whole different level.

******************************************

Dear Friend,

Kimberly Russo is fighting for her life.

In 2007, Kimberly and her family received devastating news when she was diagnosed with acute myeloid leukemia (AML). Kimberly, a devoted wife and mother of three, had a life she loved. She was determined to fight her disease, and after treatments went into remission. Kimberly and her family were thankful for her recovery, and she made a conscious effort to live each day to the fullest. Now, two years later, her cancer has returned. Doctors have told Kimberly a bone marrow transplant is her only hope for a second chance at life.

Despite her struggles, 35-year-old Kimberly is optimistic about the future. She looks forward to the lifesaving transplant that will allow her more time with her family. Kimberly and her husband, Steven, would like nothing more than to grow old together and watch their children grow up. But they need your help.

Unfortunately, Kimberly’s dream of a new life comes at a very high price.

A bon marrow transplant costs approximately $675,000. And that’s only the beginning. Even with health coverage, Kimberly will face significant medical expenses. She will require costly follow-up care and medications, which are as critical to her survival as the transplant itself. Because the transplant center is 220 miles from her home, Kimberly will incur substantial travel and temporary housing expenses as she goes through treatment and recovery. Her family will relocate to Tampa for several months to be near the transplant center, further adding to their financial strain.

What if your life depended on the compassion and generosity of others?

he National Foundation for Transplants (NFT) is working with volunteers and supporters to help relieve the growing burden of expenses for Kimberly and her family. NFT has been assisting transplant patients with advocacy and fundraising support for 26 years. Your gift—of $25, $50, $100 or more—will enable NFT to provide Kimberly with the financial support she desperately needs.

You can help by visiting www.transplants.org/donate/kimberlyrusso to make a secure online donation. You can also mail your check to NFT, 5350 Poplar Avenue, Suite 430, Memphis, TN 38119. Please make your check payable to NFT Florida Bone Marrow Fund, and write “In honor of Kimberly Russo” on the memo line.

If you have any questions about NFT, feel free to contact the NFT staff at 800-489-3863.

Many Thanks,

*********************************************************

So even though all of this seems like a dream, like I am looking at it from the outside in, it is really happening to us and even today while it is happening and in the future after it is all over, I look at it and just can not wrap my head around it. I am in awe of the knowledge of the medical professionals who are doing all they can to cure me, in awe of all the love and support we have received and still are, in awe of my strength sometimes to endure all of this and keep on fighting, even though it does not seem like fighting, as cancer is not an option for me and I will get past this.

I hope when all of this is over and I am healing to be able to take my knowledge and what I learned through cancer and turn it around and help others, I have always known I was given cancer for a reason, I don't understand the entire reason yet, maybe one day I will.

I do know being a mom and wife every day is real. As I prepare to have my transplant, I am still doing carline, diapers, cooking and cleaning and being mom. And of course, one of my favorite things - taking some photos of my family.

Wednesday, October 7, 2009

Pre-transplant testing all done

Monday and Tuesday of this week Steven and I traveled to Tampa once again for me to complete my pre-transplant or vital organ testing. We were up at 5 a.m. for our early am flight and were in Tampa and at Moffit by 9:15 a.m.

My first task was to give blood, and not just a little - 14 vials of blood. They had a very hard time finding a vain to take it from, mine are all scared over from all the chemo, they had to call in the big gun there who has a vein finder, a tool to help him find a vain that might work. They tried twice and finally got one, but it did not want to work so well, so after lots of fishing, poking and prodding and 3 vials clotting, they eventually got it all and I was done with that - 17 vials later! I then went to meet with the psychologist and also had memory tests. This testing is to set a baseline for where
I am at mentally, physically, etc. with all of my organs. Good news is my memory is excellent. After that I checked in to have a bone marrow biopsy, another iv shoved in and then I was put fast asleep for the biopsy. After I woke up, I had an EKG in the recovery room. I had to fast to the biopsy and I woke up around 3 p.m. from that thinking I could eat something, but was told that I had a CT scan at 5 pm and I had to be fasting, so no eating for me. I had a chest xray next, the easiest thing of the day. From there I went to nuclear medicine to have a muga heart scan. I had kept my iv in since we knew I would need one for these tests, but for this test they draw some blood from your iv, then they inject the blood with a small amount of radiation and then we wait 20 minutes. After 20, they inject that blood with radiation back into me through iv and then I lay still why the machine takes photos of my heart. After that was over I was on my way to get a CT of my thorax and sinuses. Finally about 5:30, we were done for the day. We headed to our hotel, exhausted and starving and found that the power was out. We got into our room to drop off our stuff and headed back out to get dinner, and we also toured the apartment complex where we will be renting an apartment, the outside common areas at least, it is really nice and they have a big pool and outside area, with a fire pit, and also in the club house a fitness area and pool table, there is a big lake to walk or run around, it looks like it will be a great place to spend some time outside with the kids while we are there. We headed back to the hotel and the power was on, and I think I was out for the night as soon as my head hit the pillow.

Up early the next day, I had an 8 am pulmonary function test, that was a challenge believe it or not. I thought I was in the clear for getting poked with needles that day, but it was not to be. The pulmonary test even needed blood, and not from just a vein, from my artery, in my wrist, to check my oxygen. Ouch, that hurts in that spot, your arteries are down deep. I survived and then completed the breathing parts, then we headed to Bone Marrow clinic for an appointment with physicians assistant, who determined that my liver enzymes are high and have been rising over last few months, they need to know why before transplant, so you guessed it, over to lab for yet another stick. This time the girl got it on first shot and I was relieved, can you tell I have alot of anxiety over being stuck all the time with needles??? We briefly meet with a social worker, every patient is assigned on at Moffit, and then we headed for a quick lunch. After lunch we headed to our final task, a bone marrow transplant class, which lasted for 2.5 hours with three other patients and their spouses. Finally we were done and heading back to the airport. There was a bad accident and we were stuck in traffic, and just made our flight, but we did make it and were home that night to sleep in our own bed and put the kids to bed. Man, what a long two days that was.

I am supposed to head back on the 19th to get the results of all the tests. I hope all is well and we are still on track for Nov 1st start date. The one glitch we have now is that policy states that they will not give you keys to the apartment to rent until you are released from hospital, which does not work for us since we need that apartment before I check in so the kids, Steven and my mom have a place to stay. They are working on seeing about making that happen, but I will not know until a few days before we leave, talk about making it hard on you. If we can not get in there are other apartments owned by private companies we have to rent for the time I am in the hospital, they could be double the cost, or we can rent a hotel room. I am crossing all I can and praying that the apartment comes through and we don't have to move more than one time.

Things are busy around here, we are starting to think about going and what we need to bring, do before we go, homeschooling the kids and more, it is a lot to think about, but we are trying to take it one day at a time, easier said than done most days.