One year or 365 days, 525,600 minutes, however you want to define it.....guess what? There is only 6 hours left of this decade. Then it's a fresh new slate my friends. Exactly one year ago, I was sitting at home with my family. I was doped up on Vicodin. I had recently had a cyst removed from my chest which was causing excruciating pain. But I wasn't going to let that get me down. At least I could be loopy with my loved ones . My kids all wanted to stay awake for the ball to drop. We all settled in the living room in front of the fire watching Ryan Seacrest. Mikey and the kids were falling asleep. Me, the one on Vicodin was awake, go figure? At midnight I filled all the champagne glasses with sparkling apple cider. ( Ahhh, so long are the days freezing our butts off at First Night in Boston). Well, at least Emily stayed awake with me. We toasted the new year and went to bed!
I can remember telling my friend Beth that my resolution was that it was going to make it the be the "Year of the Jeanie". Yup, I was finally going to take time out for myself. I was joining a book club, taking my training to the next level of training for a triathlon, and making it a priority to spend quality time with my girlfriends.
Despite some setbacks like the constant unexplained pain in my chest and then the broken sternum, that is what I did. I spent beautiful winter days out in the woods with Beth and the dogs snowshoeing. We also grew to love running outside in the cold with the dogs. Perfect days to run were days that were 30 degrees or above. And we had many of them! Beth and I got out there everyday we could and we loved it! I joined a book club and finally was enjoying reading. Not to mention the wine and the incredible women I met.
The winter despite the mounds of snow we got, seem to fly by. I was enjoying everyday outside being active. We were all looking forward to spring. I was getting a lot of substitute opportunities at school, Mike was very busy traveling even internationally. In fact, he took a business trip out to Israel. While he was in Israel, I planned a big surprise 40th Birthday at our house. I pulled it off and actually surprised Mike, which is not an easy thing to do. We had an amazing party here with the help of my brother who helped me plan the whole thing. My parents from Florida even came out to surprise him. We had such a great time toasting and roasting Mikey!
The spring in our house means baseball, baseball, baseball with a little soccer too. With four kids, our weekends are spent on the fields. Mitchy got his first two home runs! The girls played t-ball for the first time and Mike was the coach. Playing with their brothers in the yard over the years, certainly paid off. They both were great. Cam joined the soccer team and became quite a confident player. I finally took a weekend spa trip with my lifetime friend Suzi. With the warmer weather, came more and more opportunities to ride and run. My first Triathlon was on Mother's Day; however, it was looking doubtful if I would be able to participate. I was recovering from a broken sternum and had a lot of unexplained bone pain, which prevented me from hitting the pool. I had just completed a few months of physical therapy. But a week before the race, my doctor gave me the thumbs up to do the triathlon. Despite never really training for the swim part, I did it!! It felt amazing and I couldn't wait to do my next one.
Our lives quickly took a drastic turn on June 3 . That was the day that I found out that the cyst that I had removed (which had grown back on my chest) was really a malignant tumor. That phone call I received that morning at 6:30 was my defining moment in the year 2010. My life stopped as I once knew it. That feeling of invincible strength, was replaced with absolute fear and sadness. I will never forget the doctor telling me in his office that morning that now I was a cancer patient and that my strength would be tested in so many ways but that I would become a cancer survivor. At the time, all I saw was his mouth moving and all I heard was the word CANCER. One week later a bone marrow biopsy confirmed that my cancer was a rare and incurable kind. Lucky me!
I did wish for the "Year of Jeanie", right? Holy Crap this is not what I intended. Could I take it back? Why didn't I just make a more simple resolution like no eating sugar or no swearing. Holy %$&@!
My life and the life of my family has been tested this past year. I am blessed to be +45 days post transplant. I have been given a new chance on life! My energy level is incredible. Christmas was beautiful. Santa was more than generous to our kids and seeing their eyes and expressions on their faces Christmas morning was priceless! The magic of Christmas was so present this year in our home. As Mikey likes to put it, Christmas went on without a hitch! I even got to enjoy baking cookies with the kids! We had my sister and her family, my brother, my mom and my mother in law all here for an incredible Christmas dinner. I have spent everyday of the Christmas vacation, playing with the kids and enjoying watching them learn and love ice skating. Life is fantastic!
This year I had my darkest moments. However, it has also been a year filled with love, support and friendship. Our family, friends and neighbors have been there us in so many ways. I feel more loved than I have in my whole life. I feel closer to my family and friends than ever. I have seen how generous and loving people, even strangers can be. When I think of the past year, I do not see it as negative. I like to think of all the obstacles we faced as opportunities. Opportunities to see learn more about life and the people in our lives. I do hope the "opportunities" in the upcoming year are less scary and less stressful. But nonetheless, I hope to continue to learn more about what this thing called life is all about. I now no longer like to look too far into the future. Today is great. Today I feel strong and my family is together. I know first hand all that can change in a moment's notice.
This New Years I think my Resolution or my focus will be to get back in the Game, the Game of Life! To enjoy each day completely and to continue to see obstacles as opportunities that continue to strengthen us. I wish you all a Happy New Year full of Love, Happiness and Health!
Love,
Jeanie
Friday, December 31, 2010
Saturday, December 18, 2010
Day +30 Post Transplant- Loving Feeling "Normal"
Good morning everyone! I cannot believe it has been so long since I've last written. I guess like everyone, I am getting caught up with all the preparations for Christmas. It feels so good to say that. I would have never thought that I would have the energy to do all that I've been doing this last week. I keep waiting to wake up from this fantastic dream. I feel "normal'. Actually better than normal, freaking fantastic!!! My energy is where it was prior to the transplant. Granted I am not doing any real heavy lifting or exercise for that matter, but I have the energy to be up all day and keep up with the kids, the cooking, the laundry and all the fun preparations for Christmas. I still have restrictions on exposing myself to crowded places, so thankfully my mom is here and is doing all the grocery shopping and taking the kids to activities. She has been such an incredible help! I think she is in shock as well at how great I'm doing. I know Mike is. He had planned on not traveling until the first of the year, but he took a last minute important trip this week because of how well I'm doing.
As I told a friend this week, mentally I feel like I could run a 5K. Although physically I'm sure it would be a bust. It truly amazes me how a positive attitude along with surrounding yourself with positive energy can really help the healing process. This past week I went in for blood tests at my local hospital. I received such a warm welcome from all my incredible nurses and doctor. My results were great! My numbers keep improving! This Thursday I'll be going back to Dana Farber. I am hoping to get the thumbs up to be with extended family this Christmas!
It has been great to take a break from any heavy meds. I will soon have to start up again. The ongoing treatment includes the drug Revlimid. I have was on Revlimid over the summer and I responded very well to it. In a recent trial know as CALGB, patients were given a high dose of melphalan followed by a stem cell transplant followed by Revlimid , or were given melphalan, a stem cell transplant and a placebo. The results of the trial were as follows: the Revlimid group had a 60% reduction in the risk of their disease progressing after 4 years! Incredible! Mike and I are so encouraged by this report. However, about 15 patients in the Revlimid group developed a secondary cancer. The secondary cancer is called Acute Myeloid Leukemia (AML). Although, it seems to me that an 8% risk in developing a treatable cancer is a small price to pay for controlling a terminal cancer and improving my quality of life, it is still a little unsettling. I know everything has risks. I've seen some of the nasty side effects that high doses of chemo has my body. And I am sure the more a person is on this "poison" the more damage it will do. But what are my choices? According to incredible experts at Dana Farber that I have entrusted with my life, this is my best path.
I would like to share with all of you a beautiful paper my son Mitchell (age 10) wrote in school.
As I told a friend this week, mentally I feel like I could run a 5K. Although physically I'm sure it would be a bust. It truly amazes me how a positive attitude along with surrounding yourself with positive energy can really help the healing process. This past week I went in for blood tests at my local hospital. I received such a warm welcome from all my incredible nurses and doctor. My results were great! My numbers keep improving! This Thursday I'll be going back to Dana Farber. I am hoping to get the thumbs up to be with extended family this Christmas!
It has been great to take a break from any heavy meds. I will soon have to start up again. The ongoing treatment includes the drug Revlimid. I have was on Revlimid over the summer and I responded very well to it. In a recent trial know as CALGB, patients were given a high dose of melphalan followed by a stem cell transplant followed by Revlimid , or were given melphalan, a stem cell transplant and a placebo. The results of the trial were as follows: the Revlimid group had a 60% reduction in the risk of their disease progressing after 4 years! Incredible! Mike and I are so encouraged by this report. However, about 15 patients in the Revlimid group developed a secondary cancer. The secondary cancer is called Acute Myeloid Leukemia (AML). Although, it seems to me that an 8% risk in developing a treatable cancer is a small price to pay for controlling a terminal cancer and improving my quality of life, it is still a little unsettling. I know everything has risks. I've seen some of the nasty side effects that high doses of chemo has my body. And I am sure the more a person is on this "poison" the more damage it will do. But what are my choices? According to incredible experts at Dana Farber that I have entrusted with my life, this is my best path.
I would like to share with all of you a beautiful paper my son Mitchell (age 10) wrote in school.
The Perfect Gift
The perfect gift for me would be for my mom to not have cancer. I think this would be a perfect gift because since my mom has cancer she can’t have a lot of company. She also can’t go anywhere and I mean anywhere she can’t even go to our neighbor’s house. There are only two types of water she can have. For my mom not needing to go through this would be magnificent it would be by far the best gift ever. If she wasn’t sick she would be able to do so much activity with us that she can’t do right now.
The problem is that it can’t happen only if scientists find a cure for cancer. Every night I have gone to my bedroom window and I have prayed for this extremely special gift to come as soon as possible. Overall this gift would be extremely rare and special to my family. I really hope there is really magic in the world so this could happen one day.
P.S I really hope this will happen on Christmas.
How incredible is Mitch? If only it was that easy to wish for a cure. Hopefully his wish will come true. For now, we will all be blessed knowing we are all together for this Christmas. It will indeed be the most special one. My kids keep asking me what I want. And I tell them I have got my present early this year! I have to still pinch myself everyday! I am home and feeling great!
I hope you all are enjoying the last weekend before Christmas! Let's all just wish for a little snow this week so we can have a white Christmas!
Love and Hugs,
Jeanie
Thursday, December 9, 2010
Day +21- And 1 week home today!
I hope you all are getting into the Holiday Spirit! It seems like it is even coming quicker this year. I don't know if it is because at our house we are getting a little late start on it or what? Our kids are still finalizing their Santa Lists. We told them their deadline was this weekend. But our house is all decked out in beautiful lights for Santa! We also just received in the mail our Christmas Cards for this year. They are so beautiful and I cannot wait to mail them out! An incredible woman from California named Nancy who used to work for Mike's company offered to make them for us. I should mention, that Mike has never even met this woman. I am in amazement everyday of the generosity and kindness of so many who have helped our family in so many ways this past year. Our family also continues to receive home cooked meals during the week by wonderful people in our community even during the most busiest time of the year. I also receive daily beautiful cards of encouragement and prayers by so many. Even people whom I have never met are sending me messages on a daily basis. I am so touched by the beautiful human spirit of so many and it gives me so much strength and happiness.
Today marks day 21 since my transplant and 1 week home today! I owe so many of you phone calls, so I thought I would give you all an update. We went down to Dana Farber today for some blood tests and a followup with Dr. Munshi. In his words, "I'm a rockstar!" Yup, my numbers are doing what they should. They are continuing to grow! No, this doesn't mean I got the thumbs up to ditch the gloves and mask and go out to dinner. However, I did get the ok to floss my teeth. Oh it's the little things these days!
We also discussed where we go from here. My next appointment in Boston is not until the 23rd. I will however go for a followup and blood tests next Thursday with my local Oncologist Dr. Hakimian. Then probably at the end of January I will most likely start a 5th cycle of Dexamethasone, Revlimid and Velcade. Yup, you read that right. That was the chemo cocktail I had all summer long. Even though I did have the potent chemo Melphalan in the hospital, there are still Myeloma cells in my body. Recent research supports doing a 5th and 6th cycle of this Dex, Rev. and Velcade for patients following a stem cell transplant and then continuing with a Revlimid maintenance. This will hopefully keep my myeloma quiet for at least 3 years. We were a surprised to hear that I would need to do this treatment again. But as Dr. Munshi explained to us, the Myeloma world is changing at a rapid speed. He just attended a conference last week where these studies are being discussed and recommended. I am so fortunate to be a patient of these brilliant doctors in the cancer institute driving these clinical trials.
Well that is all for now. Mike, my mom and the kids should be coming home any minute from the Holiday Concert that Cam was in tonight. It makes me sad to be missing all these special times but hopefully this will be the only concert I miss for a very long time. I think I'll have some of that pumpkin ice cream in the freezer, my doctor wrote me a prescription to eat more!
Love-
Jeanie
xo
Today marks day 21 since my transplant and 1 week home today! I owe so many of you phone calls, so I thought I would give you all an update. We went down to Dana Farber today for some blood tests and a followup with Dr. Munshi. In his words, "I'm a rockstar!" Yup, my numbers are doing what they should. They are continuing to grow! No, this doesn't mean I got the thumbs up to ditch the gloves and mask and go out to dinner. However, I did get the ok to floss my teeth. Oh it's the little things these days!
We also discussed where we go from here. My next appointment in Boston is not until the 23rd. I will however go for a followup and blood tests next Thursday with my local Oncologist Dr. Hakimian. Then probably at the end of January I will most likely start a 5th cycle of Dexamethasone, Revlimid and Velcade. Yup, you read that right. That was the chemo cocktail I had all summer long. Even though I did have the potent chemo Melphalan in the hospital, there are still Myeloma cells in my body. Recent research supports doing a 5th and 6th cycle of this Dex, Rev. and Velcade for patients following a stem cell transplant and then continuing with a Revlimid maintenance. This will hopefully keep my myeloma quiet for at least 3 years. We were a surprised to hear that I would need to do this treatment again. But as Dr. Munshi explained to us, the Myeloma world is changing at a rapid speed. He just attended a conference last week where these studies are being discussed and recommended. I am so fortunate to be a patient of these brilliant doctors in the cancer institute driving these clinical trials.
Well that is all for now. Mike, my mom and the kids should be coming home any minute from the Holiday Concert that Cam was in tonight. It makes me sad to be missing all these special times but hopefully this will be the only concert I miss for a very long time. I think I'll have some of that pumpkin ice cream in the freezer, my doctor wrote me a prescription to eat more!
Love-
Jeanie
xo
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