So it has been one month since I visited my oncologist and was told there are no active cancer cells detected. The first week, I was busy telling everyone, "I'm cancer free. I am so happy." The second week I was still reeling and so happy. It was a sort of I believe it, no I don't believe it. The third week, I got a cold. I was miserable. I lost my voice, I had a low grade fever, and was having horrible night sweats. By the 4th week I was sure that I was relapsing. What are the symptoms of a relapse? Tiredness,(I slept for days), low grade fever, night sweats. Then I started to feel better. But I was still very tired and was now dizzy. I could hardly stand. Two weeks later, and here I am with a bad case of vertigo. Phew, just a cold and vertigo. Am I still cancer free? Who knows. I don't see the Dr. until September. I am thinking logically that everything is fine. In my heart I am still wondering, are there some cancer cells again? It is very disheartening. I wonder if it will always be like this. I know that because of the chemo medicine I take I will always be susceptible to infections. I am not so sure that I will ever breathe easy.
But I am moving forward. One day at a time. I am taking action to help raise money for the Leukemia and Lymphoma Society. And this is exciting to me. My event, "A Stroll to the Park" is coming up on August 22nd at 7pm. I am getting lots of positive feedback and I am thinking it will be a bit (a lot) bigger than I first thought. Our little stroll will take place at our local Farm Festival and people can walk with us for a $10.00 registration/donation fee. The posters are being printed as I write, I am getting some sponsors (hopefully enough to be able to get tee-shirts), and the donations are starting to come in. It is a simple thing. A walk, a slow stroll, lighting the way with luminaries and a small ceremony in the park's gazebo. My honorary chairperson has written her story and I will get that shortly so I can write an article for our local newspapers, and radio.
I am amazed at how it charges me to be doing something so worthwhile. Three years ago when I was first diagnosed with CML I held a fundraiser called "Comedy for a Cause". I have a cousin who is a comedian, and we had a great benefit and raised over $2500.00. I felt the need then to do something to be actively involved in finding a cure. Then I was sick and didn't feel up to doing anything. But this year, this good news of being cancer free has compelled me to become active again. And it feels wonderful. God has been so good to me. I know that every day I breathe and enjoy another beautiful day is a blessing. With all the fears, and all the concerns that come with cancer, I know there is always God. It is my soft place. My mind relaxes and calms me. My God calms me and my soul is still.
I wish you the same peace.
Saturday, July 26, 2014
Tuesday, July 8, 2014
I need to help.
It has been a month since I was declared cancer-free. I am still over the moon about it. I feel good. I am not sick. And my never ending back problems are not bothering me right now. Life is good. So I feel the need to do something. And I am.
Three years ago when I was first diagnosed with CML I felt the need to do something. So I had a fundraiser and raised $2500.00 for the American Cancer Society. It was "Comedy for a Cause". I am fortunate to have a cousin-in-law who is a comedian, and so, we had a Comedy night with a basket raffles. It went fantastically. A few days after that, I was in the hospital because my kidneys had shut down. I am not sure what caused that, but it may have been a Gleevec(chemo med) side effect. I was very sick. I felt very much the victim. I didn't want to do much of anything. As the first and then the 2nd year came around, I felt in my head that I wanted to do something again. But I didn't. I didn't want to get sick again. One probably didn't have anything to do with the other, but my level of energy was not so great. So, earlier this year, and if you have read any of my blogs, you will know that I had an epiphany. That I was a survivor, and didn't even realize it. And then, in June becoming Cancer-free, my energy level is very high. So I am doing something. I want to help.
The Leukemia & Lymphoma Society has a host of events every year called "Light the Night". Cities around the country walk in the evening and raise money for research and a cure for blood cancers. They 'light the night" with lanterns and luminaries. I decided I could manage a mini "Light the Night" event. So I am having a "Stroll to the Park". Each year, our community has a village wide festival called the Farm Festival. It is held the 3d week of August and takes place in the downtown parks. There are crafts, and farmers markets, food and fun. So my event will start in the parking lot of a local church. Hopefully, we will sell enough luminaries to light the sidewalks from the parking lot to the gazebo in the park. There is a $10.00 registration to walk, a donation really, and we will carry lights to bring awareness to blood cancers. I have a friend who had lymphoma and a bone marrow transplant who will be our Honorary Chairperson. We will stroll with balloons. We will share stories. We will wear red and white. And when we get to the gazebo, and there will be many people there in the park, we will hold a ceremony, a moment of silence and a celebration. I do not know how many people will take part, but I feel good about it. Anything I can do, will be a really good thing. If you are reading my blog, I ask you to say a prayer that this will be a huge success, and that we raise lots of money. And that we support those who have or have had, or have had a loved one pass from any of the blood cancers.
I know God will be walking with us. I firmly believe that all things happen for a reason, and although I may not know what all those reasons may be, this little thing I am doing, will have an impact. Even if it helps only one person, it will have been successful.
I wish you peace.
Three years ago when I was first diagnosed with CML I felt the need to do something. So I had a fundraiser and raised $2500.00 for the American Cancer Society. It was "Comedy for a Cause". I am fortunate to have a cousin-in-law who is a comedian, and so, we had a Comedy night with a basket raffles. It went fantastically. A few days after that, I was in the hospital because my kidneys had shut down. I am not sure what caused that, but it may have been a Gleevec(chemo med) side effect. I was very sick. I felt very much the victim. I didn't want to do much of anything. As the first and then the 2nd year came around, I felt in my head that I wanted to do something again. But I didn't. I didn't want to get sick again. One probably didn't have anything to do with the other, but my level of energy was not so great. So, earlier this year, and if you have read any of my blogs, you will know that I had an epiphany. That I was a survivor, and didn't even realize it. And then, in June becoming Cancer-free, my energy level is very high. So I am doing something. I want to help.
The Leukemia & Lymphoma Society has a host of events every year called "Light the Night". Cities around the country walk in the evening and raise money for research and a cure for blood cancers. They 'light the night" with lanterns and luminaries. I decided I could manage a mini "Light the Night" event. So I am having a "Stroll to the Park". Each year, our community has a village wide festival called the Farm Festival. It is held the 3d week of August and takes place in the downtown parks. There are crafts, and farmers markets, food and fun. So my event will start in the parking lot of a local church. Hopefully, we will sell enough luminaries to light the sidewalks from the parking lot to the gazebo in the park. There is a $10.00 registration to walk, a donation really, and we will carry lights to bring awareness to blood cancers. I have a friend who had lymphoma and a bone marrow transplant who will be our Honorary Chairperson. We will stroll with balloons. We will share stories. We will wear red and white. And when we get to the gazebo, and there will be many people there in the park, we will hold a ceremony, a moment of silence and a celebration. I do not know how many people will take part, but I feel good about it. Anything I can do, will be a really good thing. If you are reading my blog, I ask you to say a prayer that this will be a huge success, and that we raise lots of money. And that we support those who have or have had, or have had a loved one pass from any of the blood cancers.
I know God will be walking with us. I firmly believe that all things happen for a reason, and although I may not know what all those reasons may be, this little thing I am doing, will have an impact. Even if it helps only one person, it will have been successful.
I wish you peace.
Friday, June 27, 2014
It cost HOW much????
So my husband's insurance package comes comes due at the end of this month. There is to be a change. A big change. We sort of knew this was going to happen, but not the extent that will drastically. Because I have cancer.
When Dan came home from work the other night, he produced two different insurance plans. In one, our payment goes up $200.00 plus higher co-pays. The other doesn't increase the cost, but the deductible goes to $3000.00 per person per year. To a healthy person, this would not be an issue. However, the gleevec that I take every day to keep the cancer away, is $9000 a month prescription. The insurance will pay 2/3 of it. That would leave us with a co-pay of $3000.00 a month. We don't even have $500.00 in our savings account. I wonder what will happen now. I am terrified that we will end up losing what little we have. A Rep is suppose to come over next week and try to give us some options. All because I have cancer.
I did some research this morning. I may get some help from Medicare. The rep will be able to tell us this. But as I was curious how this medication which I pay 0.00 co-pay can now cost me $3000.00. So I went to the Gleevec website. It is amazing what you find when you start looking. The website stated several possible aids that help pay for the drug. It also stated that Novartis may also be able to help. I will be calling on Monday. I am almost sure, well, maybe a little sure, that the co-pay will magically drop to an affordable rate. Although, right now, with the insurance rate going up so much, I am not sure we will be able to pay for any of my prescriptions. I know I am blessed to now be in complete remission. But what happens if I cannot afford the cancer medication? Do I have the option? If I don't, what then? Do I die? It boggles my mind.
I have a friend that died last year from cancer. I know when she was in her final months we talked about medications. She was waiting for a particular approval. It cost so much money. And she couldn't afford it. I don't know if had any effect on her disease. I cannot understand about medicine.
We are pawns it would seem in the medical world. While the research and prognosis is very good for CML, I am not sure how all the money in the world could make having cancer a good thing. I feel like I am about to be penalized for having cancer.
A few months ago, the head secretary at Dan's office said some things about my insurance claims, as if to say, I've had too many. She also intimated that I had more ER visits than anyone else on their plan. And Dan's boss also said something about one employee had over 13 visits to the ER this past year. I was livid. First of all, I don't think the secretary should have said anything about anything. And that his boss mentioned how MANY visit? Come on. And just to set the record straight. I have NOT been in the ER 13 times in a year. Ever. I am not sure if maybe they were trying to scare him . I know the employer has a lot of pressure to try and keep premiums at a minimum. But to actually pick us out? I have CANCER. Dammit. I already have enough stress.
I am hoping that Medicare will allow me to just go off of his insurance completely. It's not very likely, but I have been upset ever since he told me about the changes. Of course, he has not had a raise in over 5 or 6 years. That doesn't help either.
On a completely different topic, We finally got to see Jenna and Pat last weekend. We drove to Virginia last Friday and left on this past Monday. It was wonderful. I miss Jenna so much, and it was wonderful just being able to reach out and touch her. We did lots of things while there, but I would have been happy to just sit around with a glass of wine or a bottle of beer, and talk. Actually, on Saturday, that is exactly what we did. Sort of. It rained all that day. We took a drive to the Shenandoah Valley State Park. It was too foggy to see any of the valleys. So we stopped at Trader Joe's, took Barney(their dog) and went to "Barrel Oaks Winery". It is a pet friendly winery with an inside and and outside. We sat under an umbrella at a table with our snacks, bought 3 bottles of wine and proceeded to drink all of them(not Pat-DD). We talked all afternoon. When we left there, we went to the Fairfax Town Square to an outdoor bar. I had a Mojhito for the first time ever. Actually, we all did. And then we had another. It was so relaxing. I felt a little giddy. I just smiled every time I looked at Jenna.
By the time Sunday came around, the weather had also turned around, so we went into Washington D.C. and did a lot of walking. I also had my first Falafal at a food truck. We were all exhausted from being tourists so that when we got back to their apartment, we just ordered pizza. Jenna had to leave for work at 5:30 on Monday so, she was extremely tired, and I said our goodbyes before I went to bed early, around 9:30. When we had first arrived and I had hugged her I told her I was going to hug her all weekend. And I tried. She is just not a warm and fuzzy girl. But I did get my share of hugs, none so bittersweet than the last one on Sunday night. We had many good talks.
We talked about where they are living now, and plans for the next year or two. We talked about them getting engaged and married. Pat is ready to do it yesterday. Jenna kept telling us if we wanted to go with them to the judge's office we were more than welcome. She was sounding very hard and matter-of-fact. While I was in bed later that night after a few tears, I realized that all that bluster is just a cover up. I think she is very homesick. And I think she would also like a nice big wedding but know that they cannot afford it, so she is resigning herself to not having a wedding at all. I think they will have a small wedding. They have only been in Virginia a year in September. I think they will feel more "at home" after another year. I wish I could wave a magic wand and make all their dreams come true.
Before closing this post, I think I would like to mention that Ben is now employed by the Fredonia Fire Department. He started this week. A grand accomplishment. And Daniel is finishing up his fire school training tomorrow. I am proud of all my children. I would do anything for them. If I could, I would.
Peace to all.
When Dan came home from work the other night, he produced two different insurance plans. In one, our payment goes up $200.00 plus higher co-pays. The other doesn't increase the cost, but the deductible goes to $3000.00 per person per year. To a healthy person, this would not be an issue. However, the gleevec that I take every day to keep the cancer away, is $9000 a month prescription. The insurance will pay 2/3 of it. That would leave us with a co-pay of $3000.00 a month. We don't even have $500.00 in our savings account. I wonder what will happen now. I am terrified that we will end up losing what little we have. A Rep is suppose to come over next week and try to give us some options. All because I have cancer.
I did some research this morning. I may get some help from Medicare. The rep will be able to tell us this. But as I was curious how this medication which I pay 0.00 co-pay can now cost me $3000.00. So I went to the Gleevec website. It is amazing what you find when you start looking. The website stated several possible aids that help pay for the drug. It also stated that Novartis may also be able to help. I will be calling on Monday. I am almost sure, well, maybe a little sure, that the co-pay will magically drop to an affordable rate. Although, right now, with the insurance rate going up so much, I am not sure we will be able to pay for any of my prescriptions. I know I am blessed to now be in complete remission. But what happens if I cannot afford the cancer medication? Do I have the option? If I don't, what then? Do I die? It boggles my mind.
I have a friend that died last year from cancer. I know when she was in her final months we talked about medications. She was waiting for a particular approval. It cost so much money. And she couldn't afford it. I don't know if had any effect on her disease. I cannot understand about medicine.
We are pawns it would seem in the medical world. While the research and prognosis is very good for CML, I am not sure how all the money in the world could make having cancer a good thing. I feel like I am about to be penalized for having cancer.
A few months ago, the head secretary at Dan's office said some things about my insurance claims, as if to say, I've had too many. She also intimated that I had more ER visits than anyone else on their plan. And Dan's boss also said something about one employee had over 13 visits to the ER this past year. I was livid. First of all, I don't think the secretary should have said anything about anything. And that his boss mentioned how MANY visit? Come on. And just to set the record straight. I have NOT been in the ER 13 times in a year. Ever. I am not sure if maybe they were trying to scare him . I know the employer has a lot of pressure to try and keep premiums at a minimum. But to actually pick us out? I have CANCER. Dammit. I already have enough stress.
I am hoping that Medicare will allow me to just go off of his insurance completely. It's not very likely, but I have been upset ever since he told me about the changes. Of course, he has not had a raise in over 5 or 6 years. That doesn't help either.
On a completely different topic, We finally got to see Jenna and Pat last weekend. We drove to Virginia last Friday and left on this past Monday. It was wonderful. I miss Jenna so much, and it was wonderful just being able to reach out and touch her. We did lots of things while there, but I would have been happy to just sit around with a glass of wine or a bottle of beer, and talk. Actually, on Saturday, that is exactly what we did. Sort of. It rained all that day. We took a drive to the Shenandoah Valley State Park. It was too foggy to see any of the valleys. So we stopped at Trader Joe's, took Barney(their dog) and went to "Barrel Oaks Winery". It is a pet friendly winery with an inside and and outside. We sat under an umbrella at a table with our snacks, bought 3 bottles of wine and proceeded to drink all of them(not Pat-DD). We talked all afternoon. When we left there, we went to the Fairfax Town Square to an outdoor bar. I had a Mojhito for the first time ever. Actually, we all did. And then we had another. It was so relaxing. I felt a little giddy. I just smiled every time I looked at Jenna.
By the time Sunday came around, the weather had also turned around, so we went into Washington D.C. and did a lot of walking. I also had my first Falafal at a food truck. We were all exhausted from being tourists so that when we got back to their apartment, we just ordered pizza. Jenna had to leave for work at 5:30 on Monday so, she was extremely tired, and I said our goodbyes before I went to bed early, around 9:30. When we had first arrived and I had hugged her I told her I was going to hug her all weekend. And I tried. She is just not a warm and fuzzy girl. But I did get my share of hugs, none so bittersweet than the last one on Sunday night. We had many good talks.
We talked about where they are living now, and plans for the next year or two. We talked about them getting engaged and married. Pat is ready to do it yesterday. Jenna kept telling us if we wanted to go with them to the judge's office we were more than welcome. She was sounding very hard and matter-of-fact. While I was in bed later that night after a few tears, I realized that all that bluster is just a cover up. I think she is very homesick. And I think she would also like a nice big wedding but know that they cannot afford it, so she is resigning herself to not having a wedding at all. I think they will have a small wedding. They have only been in Virginia a year in September. I think they will feel more "at home" after another year. I wish I could wave a magic wand and make all their dreams come true.
Before closing this post, I think I would like to mention that Ben is now employed by the Fredonia Fire Department. He started this week. A grand accomplishment. And Daniel is finishing up his fire school training tomorrow. I am proud of all my children. I would do anything for them. If I could, I would.
Peace to all.
Wednesday, June 25, 2014
My Fundraising Page
My Fundraising Page I am participating in a Light the Night event.
My modest goal is $250.00. My dream goal is $1000.00 My event will take place on August 22, 2014. We will take a leisurely walk from St. Anthony's parking lot in Fredonia NY and stroll downtown to the Farm Festival in the parks.
Only $10.00 donation to walk. This will go directly to the Leukemia and Lymphoma Society to end the fight of this blood cancer.
Come walk with me. Buy a balloon which we will launch at the conclusion of the walk. We will also be launching some lanterns. Price to be determined.
This is a first time event, and I am hoping to get lots of walkers. If you cannot make it but would like to make a donation, go to Leukemia & Lymphoma Society.org, then under donate add my name: Barbara Siracuse.
Thank you in advance. I am a 3 year survivor of CML, and was recently told I am now cancer free. Help me help others and make a donation today won't you?
Barb Siracuse
My modest goal is $250.00. My dream goal is $1000.00 My event will take place on August 22, 2014. We will take a leisurely walk from St. Anthony's parking lot in Fredonia NY and stroll downtown to the Farm Festival in the parks.
Only $10.00 donation to walk. This will go directly to the Leukemia and Lymphoma Society to end the fight of this blood cancer.
Come walk with me. Buy a balloon which we will launch at the conclusion of the walk. We will also be launching some lanterns. Price to be determined.
This is a first time event, and I am hoping to get lots of walkers. If you cannot make it but would like to make a donation, go to Leukemia & Lymphoma Society.org, then under donate add my name: Barbara Siracuse.
Thank you in advance. I am a 3 year survivor of CML, and was recently told I am now cancer free. Help me help others and make a donation today won't you?
Barb Siracuse
Monday, June 16, 2014
It was a poignant weekend. Relay for Life was on Saturday. I walked in the survivor's lap. And Dan walked beside me in the care giver's lap. I was anxious to tell everyone we knew that I am cancer free. And talking with many people, many of the questions I've had, the feelings of uncertainty, the niggling fear.. all of it, we who are survivors have experienced the same things. I walked with a friend who has been a survivor and cancer free for 5 or 6 years. It felt wonderful to be able to compare notes. It was also sad. There was a little girl, she couldn't have been more then 2 years old. She had a cape that said "Survivor" on it. Why the children?
We walked around the track and visited many of the tents. There were Chinese auctions, things to buy,pictures to take. I hadn't donated any money ahead of time, so we did a few chances. They served a lunch reception after the survivor's laps. We stayed for awhile and then came home for awhile. I have never been to the luminary ceremony.
At dusk, we returned to the track to find white luminary bags lining the track, some on both sides. As we walked around, reading the names of so many who have passed from cancer, it was very emotional. My brother in law Larry passed from lung cancer 6 or 7 years ago. A good friend, Christine Phelka passed this past year from cancer. Many names, many memories. And then there were bags in honor of survivors. We hadn't bought any bags, so I was surprised when walking to see my name with little music notes lit up. One of my piano students had done it. I took a picture of it. It was all so tear jerking for me.
When all the bags were lit, and it was dark, the chair people gave a little talk and then asked that we all take a silent lap around the track with a glow stick. It was amazing. All the activity that had been going on all day, the music, the voices, the sports,... all of it now silenced by this solitary line of people following one another. At the end of the lap, there was a large white ribbon in lights laid out on the grass. They had asked that we all put our glow sticks in the ribbon. It was a beautiful thing. Although I felt sad for the many who have passed from this horrible disease, there was a feeling of hope. Hope for the future. Hope for a cure. Hope that life will one day exist without cancer.
As an aside, in the afternoon when we had come home, I had a vomiting episode. I threw up the pizza that had been served. And I felt sick. I laid down on the sofa a fell asleep for over an hour. Although I still had a sour stomach when I woke up, I was determined to make it back to the luminary ceremony. I am so glad that I did. The chemo med may rear its ugly head now and again, but this was a reason for me to stand up and move through the sickness. God has seen fit to help me through these struggles. Small struggles really, compared to the fight that I seem to have a victory over. No cancer cells present. I am still adjusting to this new news.
I will continue to be blessed. I do not know what the future holds. I must still get through the continued testing of my thyroid. Perhaps there will be cancer there. But, perhaps there won't. But the leukemia? It is gone. For now at least. And God gives me a new sense of peace today. I wish you peace if you are struggling. And I invite you to leave a message if you would like to comment, or just say, "hey, I'm a survivor too."
We walked around the track and visited many of the tents. There were Chinese auctions, things to buy,pictures to take. I hadn't donated any money ahead of time, so we did a few chances. They served a lunch reception after the survivor's laps. We stayed for awhile and then came home for awhile. I have never been to the luminary ceremony.
At dusk, we returned to the track to find white luminary bags lining the track, some on both sides. As we walked around, reading the names of so many who have passed from cancer, it was very emotional. My brother in law Larry passed from lung cancer 6 or 7 years ago. A good friend, Christine Phelka passed this past year from cancer. Many names, many memories. And then there were bags in honor of survivors. We hadn't bought any bags, so I was surprised when walking to see my name with little music notes lit up. One of my piano students had done it. I took a picture of it. It was all so tear jerking for me.
When all the bags were lit, and it was dark, the chair people gave a little talk and then asked that we all take a silent lap around the track with a glow stick. It was amazing. All the activity that had been going on all day, the music, the voices, the sports,... all of it now silenced by this solitary line of people following one another. At the end of the lap, there was a large white ribbon in lights laid out on the grass. They had asked that we all put our glow sticks in the ribbon. It was a beautiful thing. Although I felt sad for the many who have passed from this horrible disease, there was a feeling of hope. Hope for the future. Hope for a cure. Hope that life will one day exist without cancer.
As an aside, in the afternoon when we had come home, I had a vomiting episode. I threw up the pizza that had been served. And I felt sick. I laid down on the sofa a fell asleep for over an hour. Although I still had a sour stomach when I woke up, I was determined to make it back to the luminary ceremony. I am so glad that I did. The chemo med may rear its ugly head now and again, but this was a reason for me to stand up and move through the sickness. God has seen fit to help me through these struggles. Small struggles really, compared to the fight that I seem to have a victory over. No cancer cells present. I am still adjusting to this new news.
I will continue to be blessed. I do not know what the future holds. I must still get through the continued testing of my thyroid. Perhaps there will be cancer there. But, perhaps there won't. But the leukemia? It is gone. For now at least. And God gives me a new sense of peace today. I wish you peace if you are struggling. And I invite you to leave a message if you would like to comment, or just say, "hey, I'm a survivor too."
Friday, June 13, 2014
A time to reflect
I am still over the moon since I received the news that I am in complete remission from my CML. No active cancer cells. It's been 2 days. I spent most of Wednesday in a sort of haze of unbelief. I was happy but spent much of the time teary eyed. And I kept looking at the report the Dr. gave me showing on a graft how my numbers were so high, and now, there are no detectable bad cells. We were planning to go out for a nice dinner tonight to celebrate. I am not sure we will do that tonight, as I've been having some stomach issues(side effects of the Gleevec). But I have spent to day in reflection.
3 Years ago, on June 6th, I was issued the devastating news that I had cancer, Leukemia. I remember the very moment. The world shifted, literally. I felt it move. And I remember being told that they had caught it early enough that once I started taking the Chemo med Gleevec I should go into remission pretty quickly. Of course that didn't happen. And there was a chance that it never would. I might be one of the unlucky ones.
3 years later, I have finally reached that milestone. I have been thinking of the heartache I have had. I cannot say it has miraculously disappeared. I feel much more calm. I am happy. But I don't so much feel like jumping up and down and yelling hooray. I feel more reflective. I find my mind wandering around the last 3 years. The wonderful support I've received, and the quiet acceptance I've learned to live with. My mom and dad are wonderful people. Our family has never been one that shows much emotion, but I know what this means for them. With my sisters, they really have never said too much. I don't think they knew what to say. Sometimes I've been hurt by that, thinking that they don't care. But I think I am coming to realize that it must be hard to talk about such a thing as cancer. They all readily volunteered to be tested for bone marrow if it became evident that I might need a bone marrow transplant. They just haven't said too much. When I was first diagnosed, I don't think anyone knew what to say, so they said nothing. I don't think I would have liked to hear, "Oh I am so sorry."
My internal struggles have mostly been my own. Dan and I don't talk very much about it either. It's always been like the elephant in the room. I would say I wanted to make sure our will was up to date, and he would change the subject. Because I was the music director at my church for so long, I would tell him that I put my funeral plans in our strong box. Again he would change the subject, or would say something like, "You don't need to jump the gun." And I never really argued that I needed to talk about things like this. I was facing my mortality, but no one else was willing to do that.
In hindsight, I could say well, I've dodged that bullet. But I don't feel like that. I think I may be harboring some sadness that I've really kept it all to myself. I suppose it is a private struggle. But there have been so many times I've wanted to talk about it. To cry about it. Even my kids would always say, "Oh, you are not going to die." How sure they all sounded. I am not sure if they said it out of fear, or if they really felt that way. I certainly haven't. I think I still need to have a discussion about it.
I am cancer free. Yes. And it is a wonderful thing God has done for me. I am not really sure why I have been thinking of so many of these things now. I wonder if this is normal? I suppose that because I never had to have infusion of chemotherapy, or radiation, so much associated with cancer, maybe it didn't seem so life threatening to my family.. But every day I know that I must take this large brown pill keep to me alive. Literally. Dr. Sood says I may be able to go off of it in 4 or 5 years. But until then, I will rely on it to keep me cancer free.
I guess I am reflecting on feelings that have been near the surface of my mind now because I am not sure that my brain has really realized that I am cancer free. Tomorrow I will walk with many other survivors, in the survivors lap of Relay for Life. And then Dan will join me in the caregivers lap. I am thankful. I am still overcome with emotion. Perhaps I will cry. Perhaps I will feel like jumping up and down. Perhaps I will just walk and reflect on this miracle God has given me this week. Peace.
3 Years ago, on June 6th, I was issued the devastating news that I had cancer, Leukemia. I remember the very moment. The world shifted, literally. I felt it move. And I remember being told that they had caught it early enough that once I started taking the Chemo med Gleevec I should go into remission pretty quickly. Of course that didn't happen. And there was a chance that it never would. I might be one of the unlucky ones.
3 years later, I have finally reached that milestone. I have been thinking of the heartache I have had. I cannot say it has miraculously disappeared. I feel much more calm. I am happy. But I don't so much feel like jumping up and down and yelling hooray. I feel more reflective. I find my mind wandering around the last 3 years. The wonderful support I've received, and the quiet acceptance I've learned to live with. My mom and dad are wonderful people. Our family has never been one that shows much emotion, but I know what this means for them. With my sisters, they really have never said too much. I don't think they knew what to say. Sometimes I've been hurt by that, thinking that they don't care. But I think I am coming to realize that it must be hard to talk about such a thing as cancer. They all readily volunteered to be tested for bone marrow if it became evident that I might need a bone marrow transplant. They just haven't said too much. When I was first diagnosed, I don't think anyone knew what to say, so they said nothing. I don't think I would have liked to hear, "Oh I am so sorry."
My internal struggles have mostly been my own. Dan and I don't talk very much about it either. It's always been like the elephant in the room. I would say I wanted to make sure our will was up to date, and he would change the subject. Because I was the music director at my church for so long, I would tell him that I put my funeral plans in our strong box. Again he would change the subject, or would say something like, "You don't need to jump the gun." And I never really argued that I needed to talk about things like this. I was facing my mortality, but no one else was willing to do that.
In hindsight, I could say well, I've dodged that bullet. But I don't feel like that. I think I may be harboring some sadness that I've really kept it all to myself. I suppose it is a private struggle. But there have been so many times I've wanted to talk about it. To cry about it. Even my kids would always say, "Oh, you are not going to die." How sure they all sounded. I am not sure if they said it out of fear, or if they really felt that way. I certainly haven't. I think I still need to have a discussion about it.
I am cancer free. Yes. And it is a wonderful thing God has done for me. I am not really sure why I have been thinking of so many of these things now. I wonder if this is normal? I suppose that because I never had to have infusion of chemotherapy, or radiation, so much associated with cancer, maybe it didn't seem so life threatening to my family.. But every day I know that I must take this large brown pill keep to me alive. Literally. Dr. Sood says I may be able to go off of it in 4 or 5 years. But until then, I will rely on it to keep me cancer free.
I guess I am reflecting on feelings that have been near the surface of my mind now because I am not sure that my brain has really realized that I am cancer free. Tomorrow I will walk with many other survivors, in the survivors lap of Relay for Life. And then Dan will join me in the caregivers lap. I am thankful. I am still overcome with emotion. Perhaps I will cry. Perhaps I will feel like jumping up and down. Perhaps I will just walk and reflect on this miracle God has given me this week. Peace.
Wednesday, June 11, 2014
I am cancer free!
I have wonderful news. I have been to Dr. Sood's this morning and my test results show "no active cancer cells present". I am overcome with emotion. Tears have been flowing on and off for over an hour now. No cancer cells. I have a "complete molecular response". I have waited 3 years for this. It is a complete remission. I have been so nervous about this appt. My numbers have always gone up and down, never making it down to this level. Although I discussed my increasing side effects from the Gleevec, it doesn't seem to matter right now. He says if I stay in this state for 3 or 4 years, I may be able to go off the med completely. It is a hard thing for me to grasp.
Yesterday I was so anxious. I don't know how I would have reacted if my numbers had gone up again. I have been praying for this day for so long, it seems part of my mantra. Every day I wake up and wonder how I will feel well, or if the cancer cells were growing. I am not sure how I will feel as the days go by. I suppose I will once again get nervous in 3 months when I go for another blood check. But I feel pretty confident now. If there are no cells present does that mean there really are none? I am thanking my Lord and God.
There have been so many thoughts and pleas, and resignation, and hope. Hope. Today that prayer has been answered. I am so thankful that I have my faith. It always sees me through. Things don't always go as I would have wanted, but these struggles I've had throughout my adult life have had some reason. I wonder as these new days go by if I will find that reason or if I will have to wait until I reach heaven to find the answers. It is a feeling of elation right now, and I am praising my God that he has seen to it, that for now anyway, I am given a reprieve from this horrible thing called cancer. Will continue to worry? Yes of course I will. But I am taking this day as a victory. Today I am a survivor and I realize that I am indeed surviving. I will walk in the Relay for Life on Saturday. I think my emotions will be different this year. I have acknowledged that I have cancer. Last year I felt like a victim. It was an unreal experience to be walking in that crowd of people who all had cancer. I had had it for 2 years then, but I did not belong in that group of walkers. I cried all the way around the track.
This year will be different. I think I will feel more like a survivor. I hope that this grateful feeling that is warming my soul will continue. I want to fly. I want to celebrate. I want to shout it to the world. I AM CANCER FREE. I didn't think I would ever be able to say it. But I am. I am cancer free. I feel at peace today. Thank you my God. I wish peace for any of you reading this. Thank you.
Yesterday I was so anxious. I don't know how I would have reacted if my numbers had gone up again. I have been praying for this day for so long, it seems part of my mantra. Every day I wake up and wonder how I will feel well, or if the cancer cells were growing. I am not sure how I will feel as the days go by. I suppose I will once again get nervous in 3 months when I go for another blood check. But I feel pretty confident now. If there are no cells present does that mean there really are none? I am thanking my Lord and God.
There have been so many thoughts and pleas, and resignation, and hope. Hope. Today that prayer has been answered. I am so thankful that I have my faith. It always sees me through. Things don't always go as I would have wanted, but these struggles I've had throughout my adult life have had some reason. I wonder as these new days go by if I will find that reason or if I will have to wait until I reach heaven to find the answers. It is a feeling of elation right now, and I am praising my God that he has seen to it, that for now anyway, I am given a reprieve from this horrible thing called cancer. Will continue to worry? Yes of course I will. But I am taking this day as a victory. Today I am a survivor and I realize that I am indeed surviving. I will walk in the Relay for Life on Saturday. I think my emotions will be different this year. I have acknowledged that I have cancer. Last year I felt like a victim. It was an unreal experience to be walking in that crowd of people who all had cancer. I had had it for 2 years then, but I did not belong in that group of walkers. I cried all the way around the track.
This year will be different. I think I will feel more like a survivor. I hope that this grateful feeling that is warming my soul will continue. I want to fly. I want to celebrate. I want to shout it to the world. I AM CANCER FREE. I didn't think I would ever be able to say it. But I am. I am cancer free. I feel at peace today. Thank you my God. I wish peace for any of you reading this. Thank you.
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