I had the most wonderful experience last week. I participated in the Light the Night Walk for Leukemia and Lymphoma in West Palm Beach. This is a 2 mile walk that takes place in the evening, in the dark, along the waterfront. The light comes from the illuminated balloons that everyone carries while they walk! Lights for those who are still in the fight, those who have survived and sadly, those who have lost the battle.
I put my team together and named it "Laugh for Life" as I believe laughter is truly the best medicine! My goal was to raise some money for the cause and participate in an event that was fun and brought attention to my cancer-Lymphoma!!! I didn't set a goal. I just figured I would do my best to make a decent contribution to the fight against cancer. I had no idea that I would end up being one of the top fundraisers of the event!
Thanks to my wonderful friends and supporters for making it possible for me to raise over $5,000!!! What a feeling! What a night! I was so proud to have my team there- 15 strong- all in their "Laugh for Life" t-shirts. A sight I will never forget!
I met fighters and survivors, young and old. I met family members whom I also consider to be fighters and survivors. Their stories would touch your heart just as they touched mine. There were prayers for those lost and a memory wall to write messages and memories. There was dancing to celebrate life! There was love everywhere.
I am so thankful to have been able to participate in this amazing event with my family and friends. My cup runneth over!! Thank you all.
Much Love-
Fran
xo
PS Come join me next year at Light the Night 2012!!
Monday, November 14, 2011
Cancer Sucks!!! We need a cure NOW!!!
Okay. I know I haven't posted in a while but I have been so busy and although I have thought about posting a hundred times, I just never sat down to do it. So now, three months later, here I am once again.
Since my scan and physical in August, life has taken over as it should. We closed on a second home in West Virginia, Lindsey has her first "real-life" job, Bryan is engaged to sweet Neka and I have gone back to work, part-time. I traveled to New York to see family and friends and got "hit" by the October snowstorm! And, I managed to raise over $5,000 for the Light the Night Walk for Leukemia and Lymphoma. (see separate post)
My white count has slowly climbed up to just within the normal range which is fantastic! When Dr. Schwartz has a smile on his face, I know I'm in good shape. I have been concerned about being around the students at school because they all have so many germs!!! Apparently, I have to be more concerned about my own body creating infections more than I have to worry about others. I had several scares but all is well for me right now.
I wish I could say the same for a dear friend of mine. I have really come back to my blog tonight because her cancer has come back and it SUCKS!!! It scares me, not to mention her. She was the picture of health. She was exercising and running in marathons and enjoying her life. And now, she has heard the devastating words- "the cancer is back." Why??? Did you hear me? I want to know why???? She was actually told at first that it wasn't cancer and she and her husband were so relieved. How could they be so wrong? Why didn't it show up on all of her follow up scans? It's so wrong. We cancer survivors count on our doctors and test and scans to give us the right information. If we can't count on them, who can we count on?
My feelings and fears can't come close to how she is feeling right now. But, her diagnosis has brought fears and doubts that I haven't really felt, even when I was going through chemo. She was supporting me. She told me I would get through it, and I did. And now I am afraid. For me and for my dear, sweet, fun-loving friend and her family.
Please pray for her. Please pray for me. Please pray for anyone that has cancer and their families.
Please pray for a cure and do what you can to help find that cure!! Now.
XO
Since my scan and physical in August, life has taken over as it should. We closed on a second home in West Virginia, Lindsey has her first "real-life" job, Bryan is engaged to sweet Neka and I have gone back to work, part-time. I traveled to New York to see family and friends and got "hit" by the October snowstorm! And, I managed to raise over $5,000 for the Light the Night Walk for Leukemia and Lymphoma. (see separate post)
My white count has slowly climbed up to just within the normal range which is fantastic! When Dr. Schwartz has a smile on his face, I know I'm in good shape. I have been concerned about being around the students at school because they all have so many germs!!! Apparently, I have to be more concerned about my own body creating infections more than I have to worry about others. I had several scares but all is well for me right now.
I wish I could say the same for a dear friend of mine. I have really come back to my blog tonight because her cancer has come back and it SUCKS!!! It scares me, not to mention her. She was the picture of health. She was exercising and running in marathons and enjoying her life. And now, she has heard the devastating words- "the cancer is back." Why??? Did you hear me? I want to know why???? She was actually told at first that it wasn't cancer and she and her husband were so relieved. How could they be so wrong? Why didn't it show up on all of her follow up scans? It's so wrong. We cancer survivors count on our doctors and test and scans to give us the right information. If we can't count on them, who can we count on?
My feelings and fears can't come close to how she is feeling right now. But, her diagnosis has brought fears and doubts that I haven't really felt, even when I was going through chemo. She was supporting me. She told me I would get through it, and I did. And now I am afraid. For me and for my dear, sweet, fun-loving friend and her family.
Please pray for her. Please pray for me. Please pray for anyone that has cancer and their families.
Please pray for a cure and do what you can to help find that cure!! Now.
XO
Monday, August 22, 2011
Results
As usual, I am behind on my posts and I apologize again. I really don't like when people keep me hanging so I shouldn't leave you all hanging. So, here's the news. . .
As you know, I was prepped and ready for my Pet Scan. Lindsey came with me for moral support and to drive me home if I needed. I went in to see Dr. Schwartz for my usual bloodwork prior to the scan. Anna put me in my supposed lucky room- #17 and we waited for the doctor to come in. I don't usually have to wait so I was getting concerned and told Lindsey that something must be up. Sure enough, the doctor came in and said, "So, I suppose you heard about the Pet Scan?" and I said, "I'm supposed to have it in 30 minutes." His response was, "Aetna changed their minds. They won't pay for it. As of Friday, they said yes and had approved it and then this morning they said No!!" WTF!!! Insurance companies make me sick!!
The game plan changed and I was heading for a cat scan instead, a reliable scan but not as in depth as the pet scan. Only problem was the special diet I did was useless. I had to now drink the barium liquid which is just plain gross!!! Then we had to sit for an hour while it worked its way through my body. I finally had to ask them to bring me back for the scan because I thought they forgot about me. The nurse's response was, "Well, we will do it but it might not be a good scan if we do it too soon." Really??? It had been over an hour and I wanted to get out of there.
Scan, iodine injection and nurse gossip. . . I was finally on my way.
Barbara, Dr. Schwartz's nurse called me the next day to say, " The scan is clear. There have been no changes. The doctor says it very good news!!!"
Needless to say, I am very relieved. I now continue on with my life, keeping my positive attitude (most of the time) and waiting for the next scan in January.
As you know, I was prepped and ready for my Pet Scan. Lindsey came with me for moral support and to drive me home if I needed. I went in to see Dr. Schwartz for my usual bloodwork prior to the scan. Anna put me in my supposed lucky room- #17 and we waited for the doctor to come in. I don't usually have to wait so I was getting concerned and told Lindsey that something must be up. Sure enough, the doctor came in and said, "So, I suppose you heard about the Pet Scan?" and I said, "I'm supposed to have it in 30 minutes." His response was, "Aetna changed their minds. They won't pay for it. As of Friday, they said yes and had approved it and then this morning they said No!!" WTF!!! Insurance companies make me sick!!
The game plan changed and I was heading for a cat scan instead, a reliable scan but not as in depth as the pet scan. Only problem was the special diet I did was useless. I had to now drink the barium liquid which is just plain gross!!! Then we had to sit for an hour while it worked its way through my body. I finally had to ask them to bring me back for the scan because I thought they forgot about me. The nurse's response was, "Well, we will do it but it might not be a good scan if we do it too soon." Really??? It had been over an hour and I wanted to get out of there.
Scan, iodine injection and nurse gossip. . . I was finally on my way.
Barbara, Dr. Schwartz's nurse called me the next day to say, " The scan is clear. There have been no changes. The doctor says it very good news!!!"
Needless to say, I am very relieved. I now continue on with my life, keeping my positive attitude (most of the time) and waiting for the next scan in January.
Sunday, July 24, 2011
Follow-Up
Since my last post in June, I went for a third opinion with a doctor at Lynn University/Phyllis and Harvey Sandler Cancer Center in Boca Raton. Dr. Richter was very kind and spoke to Craig and I in a way that was reassuring and comforting. After going over all of the details of my diagnosis and treatment thus far, he had several things to say.
First, I was very lucky to have Dr. Zelenitz at Sloan Kettering as my second opinion doctor. He equated him to being the Bruce Springsteen of all things Lymphoma; the rest of the doctors, him included, would be his groupies!
Second, he was surprised to hear that Dr. Z would agree with stopping my Rituxin treatments. He went over the history of how Rituxin was once given every 6 months, then 4 months and now every two months. Although my white count has been low, he feels that comes with the territory.
His recommendation was to go back to my doctor and fill him in on our discussion. He said he would always be there if we needed him.
At my next appointment with Dr. Schwartz, I filled him in. I didn't want him to think that I was going behind his back and wanted him to know everything. He understood but still felt that he wanted to wait until my count came up before we thought about having Rituxin again. ( At this point, I was supposed to be having my next scheduled treatment.) We did my bloodwork and flushed out my port (which has to be done every 6-8 weeks if you are not getting any treatments) and waited for the results. Lucky me-My count was up!!!!
Since Craig and I were going to be traveling most of July, there would be no time to get a treatment (not that he was planning on giving me one yet!). He wants my count to come up more, or at least stay steady for awhile. On top of that, I was due for my 6 month Pet Scan. So. . .
I am having my scan tomorrow and the pre-diet sucks. No carbs. No sugar. No cream in my coffee (I got up early enough to have some!) No fruit!! Yuck!! I am trying to stay positive but I am nervous, too. I honestly believe that there is no cancer in me at this point but until I hear the words, there is still doubt. It is true what they say- When you have had cancer, your life goes from scan to scan and the hope that you will always hear,
"You're clean and clear."
Say some prayers, please. (And, Thank You!)
First, I was very lucky to have Dr. Zelenitz at Sloan Kettering as my second opinion doctor. He equated him to being the Bruce Springsteen of all things Lymphoma; the rest of the doctors, him included, would be his groupies!
Second, he was surprised to hear that Dr. Z would agree with stopping my Rituxin treatments. He went over the history of how Rituxin was once given every 6 months, then 4 months and now every two months. Although my white count has been low, he feels that comes with the territory.
His recommendation was to go back to my doctor and fill him in on our discussion. He said he would always be there if we needed him.
At my next appointment with Dr. Schwartz, I filled him in. I didn't want him to think that I was going behind his back and wanted him to know everything. He understood but still felt that he wanted to wait until my count came up before we thought about having Rituxin again. ( At this point, I was supposed to be having my next scheduled treatment.) We did my bloodwork and flushed out my port (which has to be done every 6-8 weeks if you are not getting any treatments) and waited for the results. Lucky me-My count was up!!!!
Since Craig and I were going to be traveling most of July, there would be no time to get a treatment (not that he was planning on giving me one yet!). He wants my count to come up more, or at least stay steady for awhile. On top of that, I was due for my 6 month Pet Scan. So. . .
I am having my scan tomorrow and the pre-diet sucks. No carbs. No sugar. No cream in my coffee (I got up early enough to have some!) No fruit!! Yuck!! I am trying to stay positive but I am nervous, too. I honestly believe that there is no cancer in me at this point but until I hear the words, there is still doubt. It is true what they say- When you have had cancer, your life goes from scan to scan and the hope that you will always hear,
"You're clean and clear."
Say some prayers, please. (And, Thank You!)
Monday, June 27, 2011
I Apologize
I am so sorry I never posted an update after my bone marrow biopsy. I realize now that it left many of my friends worried and wondering if I was okay. Well, I AM okay. The test results came black clean and clear just the way I like it.
A good thing, too. We were leaving for Chicago for the restaurant show and some fun times with Bryan. It was his first trip to the Windy City and it was a great one! Lots of delicious food, touring the city and of course, a Cubs game!
Next up, moving Lindsey to New York City for the summer. Another fun trip with a little family time thrown in for good measure. And of course, a lot of really great food. Thank goodness we walked a lot! It wasn't easy leaving my baby in the big city but there she is-living the life the she was born to live.
Unfortunately, I ended up with a cold/sinus infection. Probably from sitting at the Cubs game in freezing weather and flying on germy airplanes! After two round of the Z-Pak, I was back to normal. Figuratively speaking, of course!
There has been a little glitch, though. Apparently, my neutrophils (white blood cells) having continued to stay low. At my last visit, I hit an all time low-900. I shouldn't really go below 1900, so you can imagine how my doctor and I feel about this. I can't understand why there isn't something they can give me to make my count go up (other than steroids, which he and I don't want to use). The side effects are too awful and detrimental. Picture a bloated, crying, angry Franny. Not a pretty picture, is it?
The other problem that comes along with a low count is the decision on my doctor's part, and the doctors at Sloan Kettering, to discontinue the protocol of my maintenance plan of Rituxan every two months. The belief now, is that the Rituxan is creating the low white count. Imagine how I feel when I'm not allowed to have the drug that is supposed to help keep the Lymphoma away.
We are now in search of a solution. Stay tuned. . .
A good thing, too. We were leaving for Chicago for the restaurant show and some fun times with Bryan. It was his first trip to the Windy City and it was a great one! Lots of delicious food, touring the city and of course, a Cubs game!
Next up, moving Lindsey to New York City for the summer. Another fun trip with a little family time thrown in for good measure. And of course, a lot of really great food. Thank goodness we walked a lot! It wasn't easy leaving my baby in the big city but there she is-living the life the she was born to live.
Unfortunately, I ended up with a cold/sinus infection. Probably from sitting at the Cubs game in freezing weather and flying on germy airplanes! After two round of the Z-Pak, I was back to normal. Figuratively speaking, of course!
There has been a little glitch, though. Apparently, my neutrophils (white blood cells) having continued to stay low. At my last visit, I hit an all time low-900. I shouldn't really go below 1900, so you can imagine how my doctor and I feel about this. I can't understand why there isn't something they can give me to make my count go up (other than steroids, which he and I don't want to use). The side effects are too awful and detrimental. Picture a bloated, crying, angry Franny. Not a pretty picture, is it?
The other problem that comes along with a low count is the decision on my doctor's part, and the doctors at Sloan Kettering, to discontinue the protocol of my maintenance plan of Rituxan every two months. The belief now, is that the Rituxan is creating the low white count. Imagine how I feel when I'm not allowed to have the drug that is supposed to help keep the Lymphoma away.
We are now in search of a solution. Stay tuned. . .
Wednesday, May 18, 2011
Biopsy Blues
Well, I had the Bone Marrow Biopsy and boy, was it fun. NOT! I was on time for once with a .25 Xanax in me for comfort. When I told the nurse, Anna, about the Xanax, she said I should have taken a .5. (Of course!!) Then, while doing my bloodwork and being weighed (of course I gained another pound! What the hell?) I was asked if I received paper work or info on the procedure. My answer was-No! Damn. So, Anna handed me a packet of papers on what to expect. There were too many pages to read before being stuck so I took another half of Xanax and got up on the table. I had my I-Pad with me and tried to listen to relaxing music to calm my nerves. Celine Dion and Andrea Bocelli's "The Prayer" was playing in my ears when Dr. Schwartz came in.
I had to lay on my abdomen and they proceeded to clean my back with betadine solution. After applying a drape which only exposed the necessary area, the doctor said he was going to give me the first novacaine/lidocaine shot. Ouch! Then came the second shot. I thought I wouldn't feel the second one since the first one was supposed to numb my back, right? No such luck. This one went deeper and it hurt like hell! All I could think of saying was "Oh my God!!!" and I said it many times, very loudly.
Next step, the big needle used to withdraw the marrow from my bone. This needle went right into my right hip bone. It felt like a huge amount of pressure on my back and I didn't like it one bit. I was told before the procedure that most of the pain comes when the marrow is drawn out. The doctor told me it would be 5 seconds of pain and Anna told me it would be more like a minute. Big difference!!! All I can say is that it hurt. A LOT!!!! So I just kept saying, "Oh my God""Oh my God" "Oh my GOOOOOD"!!!!
I had read about the procedure on the computer and a dry pull had been mentioned. This means that when the doctor tries to draw the marrow out, nothing comes out and they have to do it again. So, I asked, "Please tell me it's not a dry pull?" and the doctor said, "No, it's just coming out very slowly. You don't seem to want to give it up." REALLY? Too Funny!! GREAT!!!! I always have to be unique!
But then it was over. Anna had to keep compression on the area for ten minutes and that's when I started to have my weird reaction-feeling hot all over like I'm going to faint. Good thing I was laying down. I forgot my ice pack that I like to bring with me for these types of situations so I asked Anna for my cold water bottle to be placed on my neck. How wonderful that felt!
When it was time for me to get up to go, Anna asked me if the sight of blood makes me sick and I said no. What??? Why????? I turned around and there were all these little slides with blood on them. My blood. Yuck!
I got dressed and walked out expecting Craig to be in the inner-office waiting area but he was not. I found him in the main waiting room in the furthest chair. Too cute! (They had told him he couldn't be in the room during the procedure which is hysterical. He could have never been in there. No way!)
I made my appointment for the follow up and we went out for a tasty breakfast. I rested for the rest of the day and have only been a little sore in my hip area since the procedure. I have to say that if I ever have to do it again, I would choose to do it this way-being awake. Yes, it hurt like a b---h, but when I was put out the first time it took half a day. Pre-op, IV, post-op and then I fainted in my driveway (remember?).
Oh, the lessons I'm learning.
I had to lay on my abdomen and they proceeded to clean my back with betadine solution. After applying a drape which only exposed the necessary area, the doctor said he was going to give me the first novacaine/lidocaine shot. Ouch! Then came the second shot. I thought I wouldn't feel the second one since the first one was supposed to numb my back, right? No such luck. This one went deeper and it hurt like hell! All I could think of saying was "Oh my God!!!" and I said it many times, very loudly.
Next step, the big needle used to withdraw the marrow from my bone. This needle went right into my right hip bone. It felt like a huge amount of pressure on my back and I didn't like it one bit. I was told before the procedure that most of the pain comes when the marrow is drawn out. The doctor told me it would be 5 seconds of pain and Anna told me it would be more like a minute. Big difference!!! All I can say is that it hurt. A LOT!!!! So I just kept saying, "Oh my God""Oh my God" "Oh my GOOOOOD"!!!!
I had read about the procedure on the computer and a dry pull had been mentioned. This means that when the doctor tries to draw the marrow out, nothing comes out and they have to do it again. So, I asked, "Please tell me it's not a dry pull?" and the doctor said, "No, it's just coming out very slowly. You don't seem to want to give it up." REALLY? Too Funny!! GREAT!!!! I always have to be unique!
But then it was over. Anna had to keep compression on the area for ten minutes and that's when I started to have my weird reaction-feeling hot all over like I'm going to faint. Good thing I was laying down. I forgot my ice pack that I like to bring with me for these types of situations so I asked Anna for my cold water bottle to be placed on my neck. How wonderful that felt!
When it was time for me to get up to go, Anna asked me if the sight of blood makes me sick and I said no. What??? Why????? I turned around and there were all these little slides with blood on them. My blood. Yuck!
I got dressed and walked out expecting Craig to be in the inner-office waiting area but he was not. I found him in the main waiting room in the furthest chair. Too cute! (They had told him he couldn't be in the room during the procedure which is hysterical. He could have never been in there. No way!)
I made my appointment for the follow up and we went out for a tasty breakfast. I rested for the rest of the day and have only been a little sore in my hip area since the procedure. I have to say that if I ever have to do it again, I would choose to do it this way-being awake. Yes, it hurt like a b---h, but when I was put out the first time it took half a day. Pre-op, IV, post-op and then I fainted in my driveway (remember?).
Oh, the lessons I'm learning.
Wednesday, May 11, 2011
It's a Tricky Game
After two months, I went back for my second maintenance treatment with Rituxin. My pre- blood work showed a very low white count again but Dr. Schwartz wanted to go ahead with the treatment. Last time, my white count went up with the help of the steroids so he figured it would happen again.
I had Karen as my nurse and she has definitely become my favorite. She is so kind and more importantly sweet and efficient! She offered me a copy of my bloodwork, which has never happened before. I wish now that I had all of the copies because "Houston, we have a problem!" (more on that in a moment)
The treatment went well aside from the needle hurting when inserted in my port and the tape hurting when Karen tried to get it off. Apparently, I have developed an intolerance to adhesive. OUCH!
I just went for my one week follow up for my white count check and although it is slightly up, the doctor is still concerned. He mentioned on my last visit that he might want to do a new bone marrow biopsy and now he really wants to do it. He is afraid that the Rituxin is causing the problem and wants to stop giving it to me. The only problem with that approach is the fact that Rituxin is the drug required for this type of Lymphoma. WTF!!! I requested that the Chief of Lymphoma at Sloan get my chart prior to the test so he can confirm the approach and in the process I found out that he was only receiving my doctors notes but not the specific blood counts. I was supposed to tell them to send them? Really? So, if I had gotten a print out after every visit I could have sent them myself. Oy vey! It's a tricky game! Hopefully, everything will be sent today.
The most stressful thing at the moment is the impending bone marrow biopsy tomorrow. The only other one I had was under anesthesia. This one will be done in his office with a local. The movies depict this test as very painful and I'm not really into that. He said I might feel nothing or I might feel five seconds of pain. Really? Either way, I'm not thrilled. But as my dad always told me, and still does, "You do what you gotta do."
So, I will. And, I will continue to keep you posted.
Thanks for listening.
I had Karen as my nurse and she has definitely become my favorite. She is so kind and more importantly sweet and efficient! She offered me a copy of my bloodwork, which has never happened before. I wish now that I had all of the copies because "Houston, we have a problem!" (more on that in a moment)
The treatment went well aside from the needle hurting when inserted in my port and the tape hurting when Karen tried to get it off. Apparently, I have developed an intolerance to adhesive. OUCH!
I just went for my one week follow up for my white count check and although it is slightly up, the doctor is still concerned. He mentioned on my last visit that he might want to do a new bone marrow biopsy and now he really wants to do it. He is afraid that the Rituxin is causing the problem and wants to stop giving it to me. The only problem with that approach is the fact that Rituxin is the drug required for this type of Lymphoma. WTF!!! I requested that the Chief of Lymphoma at Sloan get my chart prior to the test so he can confirm the approach and in the process I found out that he was only receiving my doctors notes but not the specific blood counts. I was supposed to tell them to send them? Really? So, if I had gotten a print out after every visit I could have sent them myself. Oy vey! It's a tricky game! Hopefully, everything will be sent today.
The most stressful thing at the moment is the impending bone marrow biopsy tomorrow. The only other one I had was under anesthesia. This one will be done in his office with a local. The movies depict this test as very painful and I'm not really into that. He said I might feel nothing or I might feel five seconds of pain. Really? Either way, I'm not thrilled. But as my dad always told me, and still does, "You do what you gotta do."
So, I will. And, I will continue to keep you posted.
Thanks for listening.
Saturday, April 16, 2011
This is so hard!!
I went back to the doctor for another blood check and my white count is low AGAIN!! He says I have neutropenia (decreased white blood cells) and he doesn't seem to be too worried. He doesn't even want me to come back until my next treatment which is May 4.
So, basically, I'm more susceptible to infection which isn't so great since I just started traveling a little bit and even went back to work for one day. Of course, sneezing, coughing and vomiting elementary school students are not the best thing for me right now. Which is too bad because I'm bored and lonely a lot. And let's not forget, emotional. Oy vey!!!
My entire body hurts sometimes and after testing there really isn't a diagnosis other than being caused by chemo and medications. I have been doing pilates and physical therapy which seem to help but it's tough. I feel so old!!! You should see me trying to get up out of the car after sitting for awhile-Wow!! Just give me a few minutes and then I'm up and about again.
I did find out that I have bursitis and capsulitis in my foot. That's a treat! And how is it treated, you may ask? Cortisone shots-OUCH!-which all of my friends have said- "It kills!", "It doesn't hurt that bad!", "You should see how long the needle is!!!", "You will feel so much better after you get it!". Sounds like fun-I'm terrified!!!! I hate needles!
I am trying to let the good times take precedence over feeling crappy and worrying about facing this illness for the next few years and the rest of my life. It works for awhile but it's so hard!! I had an amazing time in Atlanta with Craig, Bryan and Neka. It was a blast!!! The Braves/Phillies Game, the Hawks/Heat Game and family time-what more could you ask for? I just still can't believe that Bryan is 26!! How does that happen? I can close my eyes and see him as an adorable two year old!! I am so proud of the young man he has become.
Next week will provide another good-time distraction-Lindsey and I are going to see OPRAH for Lindsey's 22nd birthday!!! Thanks to Craig, we are off for a mother/daughter adventure in Chicago. Please pray that the rain stays away. There's nothing worse than being in the "windy city" when it is cold AND rainy. But, we will have fun no matter what!!!
Thanks for letting me vent. . .
I will hang in there, I will continue to beat this thing and I Will Survive!!!
So, basically, I'm more susceptible to infection which isn't so great since I just started traveling a little bit and even went back to work for one day. Of course, sneezing, coughing and vomiting elementary school students are not the best thing for me right now. Which is too bad because I'm bored and lonely a lot. And let's not forget, emotional. Oy vey!!!
My entire body hurts sometimes and after testing there really isn't a diagnosis other than being caused by chemo and medications. I have been doing pilates and physical therapy which seem to help but it's tough. I feel so old!!! You should see me trying to get up out of the car after sitting for awhile-Wow!! Just give me a few minutes and then I'm up and about again.
I did find out that I have bursitis and capsulitis in my foot. That's a treat! And how is it treated, you may ask? Cortisone shots-OUCH!-which all of my friends have said- "It kills!", "It doesn't hurt that bad!", "You should see how long the needle is!!!", "You will feel so much better after you get it!". Sounds like fun-I'm terrified!!!! I hate needles!
I am trying to let the good times take precedence over feeling crappy and worrying about facing this illness for the next few years and the rest of my life. It works for awhile but it's so hard!! I had an amazing time in Atlanta with Craig, Bryan and Neka. It was a blast!!! The Braves/Phillies Game, the Hawks/Heat Game and family time-what more could you ask for? I just still can't believe that Bryan is 26!! How does that happen? I can close my eyes and see him as an adorable two year old!! I am so proud of the young man he has become.
Next week will provide another good-time distraction-Lindsey and I are going to see OPRAH for Lindsey's 22nd birthday!!! Thanks to Craig, we are off for a mother/daughter adventure in Chicago. Please pray that the rain stays away. There's nothing worse than being in the "windy city" when it is cold AND rainy. But, we will have fun no matter what!!!
Thanks for letting me vent. . .
I will hang in there, I will continue to beat this thing and I Will Survive!!!
Monday, March 21, 2011
Follow-Up
Some of you might be worried about me since my last post so I would like to give an update on my white blood cell count- It is back to a somewhat "normal" or acceptable level.
Instead of waiting another two months, I had to go back to the the doctor for a follow-up visit in a week. He was pleased, as was I! It was a very, very long week of waiting and wondering. I tried not to let it get me down and although I wasn't planning on thinking about it all the time but no matter what I was doing, it was always in the back of my mind. My amazing Craig tried to help by asking all of his club members who had any experience with cancer or lymphoma about having a low white count and he kept trying to reassure me that it was a normal thing to happen and not to worry. I think being reassured by his members helps him as much as it helps me!
I hate having negative feelings. I feel they can become too detrimental to my health and healing but sometimes, in a situation like this, they are unavoidable. I was reassured about this by my dear friend Sharon while we were away with her and her husband last weekend. She told me that after what I had been through in such a short period of time, I was entitled my feelings. It's hard to stay so positive all the time. . .
And when all else fails, some song comes on the radio that helps with your doubts. Craig and I were in the car and the doubts were in the back of my mind when two songs came on the radio back to back. The first, "Hold On" by Michael Buble. It basically said that the two of us would get through it together (I'm paraphrasing). The second, "Live Like You're Dying", by Tim McGraw.
So, there you have it. Live.
Instead of waiting another two months, I had to go back to the the doctor for a follow-up visit in a week. He was pleased, as was I! It was a very, very long week of waiting and wondering. I tried not to let it get me down and although I wasn't planning on thinking about it all the time but no matter what I was doing, it was always in the back of my mind. My amazing Craig tried to help by asking all of his club members who had any experience with cancer or lymphoma about having a low white count and he kept trying to reassure me that it was a normal thing to happen and not to worry. I think being reassured by his members helps him as much as it helps me!
I hate having negative feelings. I feel they can become too detrimental to my health and healing but sometimes, in a situation like this, they are unavoidable. I was reassured about this by my dear friend Sharon while we were away with her and her husband last weekend. She told me that after what I had been through in such a short period of time, I was entitled my feelings. It's hard to stay so positive all the time. . .
And when all else fails, some song comes on the radio that helps with your doubts. Craig and I were in the car and the doubts were in the back of my mind when two songs came on the radio back to back. The first, "Hold On" by Michael Buble. It basically said that the two of us would get through it together (I'm paraphrasing). The second, "Live Like You're Dying", by Tim McGraw.
So, there you have it. Live.
Maintenance
Well, it was time for my first "tune-up" as Nurse Sheila calls it. I was heading in with a little trepidation. I wasn't looking forward to being "stuck" in the port again. It's amazing how you can get so used to being stuck every week but when you have two months off, it's like starting over again.
We were a little late getting there due to an empty gas tank. Then the blood work took a long time to get back from the lab. The news was not great-my white count was very, very low. Lindsey was my escort for the day and her ears perked up and I'm sure her heart started to race. We both asked Dr. Schwartz "Why?" and "What would cause this to happen?" He said he wasn't really sure and asked a lot of questions as to any symptoms I might have had like night sweats (often) aches and pains (of course) and still wasn't sure. When he mentioned the possibility of another bone marrow test my heart sank. I just had a clear pet scan, for crying out loud!!!
He decided to send me for the "tune-up" because it couldn't hurt-it could only help, particularly with the terrible bone pain and aches I was having. (I felt like I was 90 years old on some days!) Of course, they were running behind over at infusion so we had to wait. It is, unfortunately, a very busy place and there were no empty chairs! Nurse Naomi finally called me in and we settled in for the three hour treatment, armed with our I-Pads to help pass the time.
Put in a holding pattern again due to my low white count, (they needed verbal approval from the doctor), my friend Fran, the most amazing volunteer, brought me a cup of tea and we caught up on the last two months. She is truly amazing and so much fun to talk to.
We finally got the ball rolling and the infusion dripping. I took a little snooze, (due to the benadryl in the drip), Lisa came by to visit, and after five very long hours, we were on our way home! Honestly, it could have been a lot worse if the staff at PBCI weren't so amazing!
We were a little late getting there due to an empty gas tank. Then the blood work took a long time to get back from the lab. The news was not great-my white count was very, very low. Lindsey was my escort for the day and her ears perked up and I'm sure her heart started to race. We both asked Dr. Schwartz "Why?" and "What would cause this to happen?" He said he wasn't really sure and asked a lot of questions as to any symptoms I might have had like night sweats (often) aches and pains (of course) and still wasn't sure. When he mentioned the possibility of another bone marrow test my heart sank. I just had a clear pet scan, for crying out loud!!!
He decided to send me for the "tune-up" because it couldn't hurt-it could only help, particularly with the terrible bone pain and aches I was having. (I felt like I was 90 years old on some days!) Of course, they were running behind over at infusion so we had to wait. It is, unfortunately, a very busy place and there were no empty chairs! Nurse Naomi finally called me in and we settled in for the three hour treatment, armed with our I-Pads to help pass the time.
Put in a holding pattern again due to my low white count, (they needed verbal approval from the doctor), my friend Fran, the most amazing volunteer, brought me a cup of tea and we caught up on the last two months. She is truly amazing and so much fun to talk to.
We finally got the ball rolling and the infusion dripping. I took a little snooze, (due to the benadryl in the drip), Lisa came by to visit, and after five very long hours, we were on our way home! Honestly, it could have been a lot worse if the staff at PBCI weren't so amazing!
Life Goes On
It's been a busy two months since my petscan. I've had a great time catching up on my travel and have been to Tallahassee, Orlando, Key Largo and New York. Being able to spend time with family and friends and celebrate life has been amazing!
My friends from school had a happy hour for me to celebrate being healthy and I was so surprised to see how many people showed up. It touched me deeply and warmed my heart. It was even more special because Lindsey was with me!
I also attended the Little Smiles Stars Ball with Lindsey as my date. This event is a very special party for children with cancer and life threatening diseases. These children have been my inspiration throughout my ordeal. I always reminded myself that if the kids could fight with dignity and strength so could I. To see these children all dressed up-smiling, dancing and happy to be alive was one of the most touching thing I have ever witnessed and experienced. I know Lindsey felt the same way. These children truly help to put life in a new perspective.
Cherish it!
My friends from school had a happy hour for me to celebrate being healthy and I was so surprised to see how many people showed up. It touched me deeply and warmed my heart. It was even more special because Lindsey was with me!
I also attended the Little Smiles Stars Ball with Lindsey as my date. This event is a very special party for children with cancer and life threatening diseases. These children have been my inspiration throughout my ordeal. I always reminded myself that if the kids could fight with dignity and strength so could I. To see these children all dressed up-smiling, dancing and happy to be alive was one of the most touching thing I have ever witnessed and experienced. I know Lindsey felt the same way. These children truly help to put life in a new perspective.
Cherish it!
Monday, February 7, 2011
I WILL Survive!!!!!
As many of my dear friends know, the results are in. According to my oncologist, my Pet Scan came back "normal"! I don't really think I can put into words how I feel, but I will try.
When I first heard the news, I was home alone and it was early in the morning. I was feeling a little nauseous, probably from the stress of doing the scan and then waiting for the results. I was going to call Dr. Schwartz at 9:00 am but he beat me to the punch. When he said the word "normal" I was speechless and then I think I said something like, "Wow! That's great!" He said he was very pleased with the results and it was exactly what we were hoping for. I thanked Dr. Schwartz and then called Craig. He was ecstatic! (He had already told our friends that I was fine-the power of positive thinking1so boy was I glad that he was right!)
I thought I would be doing the happy dance or screaming from the roof top but I was numb, and tired. I guess I was just in shock. I posted the great news on Facebook and my post filled up with messages of love and support and joy! I've said it before and I'll say it again, all of the prayers and messages from everyone has helped me win this fight. I'm 100% sure of it! I am so thankful, and fortunate, to have each and every one of you in my life!
Honestly, it has taken several days for it truly to sink in. Once I started to tell people in person and I would see the tears of joy in their eyes, it started to bring tears of joy to my eyes. The hugs were amazing! I know it sounds weird, but when I saw how happy everyone was I started to believe I was going to be fine.
Someone told me that they never thought Craig could smile so Big! I am so happy to be able to make him feel that way and I am smiling Big now, too!
XO
When I first heard the news, I was home alone and it was early in the morning. I was feeling a little nauseous, probably from the stress of doing the scan and then waiting for the results. I was going to call Dr. Schwartz at 9:00 am but he beat me to the punch. When he said the word "normal" I was speechless and then I think I said something like, "Wow! That's great!" He said he was very pleased with the results and it was exactly what we were hoping for. I thanked Dr. Schwartz and then called Craig. He was ecstatic! (He had already told our friends that I was fine-the power of positive thinking1so boy was I glad that he was right!)
I thought I would be doing the happy dance or screaming from the roof top but I was numb, and tired. I guess I was just in shock. I posted the great news on Facebook and my post filled up with messages of love and support and joy! I've said it before and I'll say it again, all of the prayers and messages from everyone has helped me win this fight. I'm 100% sure of it! I am so thankful, and fortunate, to have each and every one of you in my life!
Honestly, it has taken several days for it truly to sink in. Once I started to tell people in person and I would see the tears of joy in their eyes, it started to bring tears of joy to my eyes. The hugs were amazing! I know it sounds weird, but when I saw how happy everyone was I started to believe I was going to be fine.
Someone told me that they never thought Craig could smile so Big! I am so happy to be able to make him feel that way and I am smiling Big now, too!
XO
Sunday, January 30, 2011
Everything Happens for a Reason, Part Two
I went to the grocery store the other day and ran into an old friend. After bumping into her and her daughter on almost every aisle, we ran into each other by the Hallmark cards. We started talking about who we were buying cards for and how we find it hard to comprehend how many people we know have or had cancer. One thing led to another and she recommended I read a book called The Noticer by Andy Andrews. She loved it so much she then bought ten more copies and sent it to friends. I went that afternoon to the bookstore and bought it and read it that day.
Wow!! What a book! It is all about perspective and is told in a fiction/non fiction way. I highly recommend this book to everyone. It will help you, as it helped me, look at your life in whole new way. Please, please, please read this book. You won't regret it. Trust me.
xo
Wow!! What a book! It is all about perspective and is told in a fiction/non fiction way. I highly recommend this book to everyone. It will help you, as it helped me, look at your life in whole new way. Please, please, please read this book. You won't regret it. Trust me.
xo
Everything Happens for a Reason
I hadn't seen my friend Virginia and her daughter Magnolia in quite some time but we finally set up a dinner date for last week. While catching up, Virginia mentioned that she was going to a Leukemia Lymphoma Society meeting over the weekend. She was going to give a pep talk to the people who were in training for the TNT Marathon/Triathlon in San Diego. I decided to go and see what it was all about and I was so glad I did.
Several amazing things happened. First, I was introduced to Roberta. Roberta is a survivor of Lymphoma as well as a hugs volunteer for the Leukemia and Lymphoma Society. We connected immediately. She is originally from Long Island, as am I, and she has been through the fight and looks amazing. She was and is a true inspiration to me.
Then, as I was talking to Virginia, I surveyed the room and noticed that our former doctor, John Hildreth, was amongst the participants. He was our favorite doctor, think Marcus Welby, and we were devastated when he retired. He is 72 years old and is going to do the marathon/triathlon. He is amazing!!! After catching up with him, he asked me to write my name on his participant bracelet. This means he will do the marathon for me!!!! I was so touched. Just being around him made me feel better. I felt even better when he told me that his wife's oncologist when she was battling cancer was my oncologist, Dr. Schwartz. Wow! If Dr. Schwartz was their choice, then I know for sure I'm in the best hands.
Finally, one of the guest speakers gave an amazing testimony of thanks to the participants. His words about his experience fighting Lymphoma and waiting for the pet scan results really touched my heart. I deeply felt everything he was saying. He spoke from his heart with humility and humor and thanked everyone who was participating for helping him and so many others for getting their lives back.
So I, too, would like to thank everyone who is helping to raise awareness and funds for the Leukemia and Lymphoma Society. THANK YOU!!!! And, to Virginia, for setting up our dinner plans, THANK YOU. If it wasn't for you, I wouldn't have even know about the event and I would have missed out on an experience of a lifetime. XO
Several amazing things happened. First, I was introduced to Roberta. Roberta is a survivor of Lymphoma as well as a hugs volunteer for the Leukemia and Lymphoma Society. We connected immediately. She is originally from Long Island, as am I, and she has been through the fight and looks amazing. She was and is a true inspiration to me.
Then, as I was talking to Virginia, I surveyed the room and noticed that our former doctor, John Hildreth, was amongst the participants. He was our favorite doctor, think Marcus Welby, and we were devastated when he retired. He is 72 years old and is going to do the marathon/triathlon. He is amazing!!! After catching up with him, he asked me to write my name on his participant bracelet. This means he will do the marathon for me!!!! I was so touched. Just being around him made me feel better. I felt even better when he told me that his wife's oncologist when she was battling cancer was my oncologist, Dr. Schwartz. Wow! If Dr. Schwartz was their choice, then I know for sure I'm in the best hands.
Finally, one of the guest speakers gave an amazing testimony of thanks to the participants. His words about his experience fighting Lymphoma and waiting for the pet scan results really touched my heart. I deeply felt everything he was saying. He spoke from his heart with humility and humor and thanked everyone who was participating for helping him and so many others for getting their lives back.
So I, too, would like to thank everyone who is helping to raise awareness and funds for the Leukemia and Lymphoma Society. THANK YOU!!!! And, to Virginia, for setting up our dinner plans, THANK YOU. If it wasn't for you, I wouldn't have even know about the event and I would have missed out on an experience of a lifetime. XO
Saturday, January 22, 2011
The Waiting Game
It has been a very strange time for me since my chemo treatment last week. I have been very jittery and have not been able to really relax. And yet, I seem to be more tired at the same time. Go figure.
At my last doctor's visit, my blood work was fine. Actually, my white count was outstanding!!! We set up the pet scan for January 31st and the anticipation is agonizing. So many things running through my mind as I wait.
For example, I was just getting used to my schedule and weekly check-ins with the doctor. It was my routine. Now, I don't have to go every week. I've been cut off. The doctor doesn't want to see me until the morning of the scan. How is that possible? The what ifs are running through my mind at warp speed.
I am always trying to stay positive but what if I'm too positive? I don't want to be disappointed. But I don't want to be negative either. It's like a ping pong match is going in my head and it is giving me a headache. Speaking of my head, they say my hair will start to grow back now that I am done. When do I stop shaving it? Answer: everyone is different, no pat answer. The questions go on and on. . . .
For distraction, "something" told me to pick up a book that Craig gave me when I was first diagnosed but just couldn't focus on at the time. The book- It's Not About the Hair, by Debra Jarvis- saved me. It was like manna from heaven, and considering that Debra Jarvis is a chaplain for oncology patients in Seattle, I mean it! She talked about everything that I was thinking about from her own first hand experience in dealing with her battle with breast cancer. She seemed to be speaking to me with openness and honesty and most importantly, humor! If you know anyone that is battling any type of cancer, I would definitely recommend this book as a gift.
I was so moved by this book that I decided to send Debra a thank you note. Guess what? She wrote right back and made my day!
At my last doctor's visit, my blood work was fine. Actually, my white count was outstanding!!! We set up the pet scan for January 31st and the anticipation is agonizing. So many things running through my mind as I wait.
For example, I was just getting used to my schedule and weekly check-ins with the doctor. It was my routine. Now, I don't have to go every week. I've been cut off. The doctor doesn't want to see me until the morning of the scan. How is that possible? The what ifs are running through my mind at warp speed.
I am always trying to stay positive but what if I'm too positive? I don't want to be disappointed. But I don't want to be negative either. It's like a ping pong match is going in my head and it is giving me a headache. Speaking of my head, they say my hair will start to grow back now that I am done. When do I stop shaving it? Answer: everyone is different, no pat answer. The questions go on and on. . . .
For distraction, "something" told me to pick up a book that Craig gave me when I was first diagnosed but just couldn't focus on at the time. The book- It's Not About the Hair, by Debra Jarvis- saved me. It was like manna from heaven, and considering that Debra Jarvis is a chaplain for oncology patients in Seattle, I mean it! She talked about everything that I was thinking about from her own first hand experience in dealing with her battle with breast cancer. She seemed to be speaking to me with openness and honesty and most importantly, humor! If you know anyone that is battling any type of cancer, I would definitely recommend this book as a gift.
I was so moved by this book that I decided to send Debra a thank you note. Guess what? She wrote right back and made my day!
Is the coast clear?
Well, I can finally say that I completed my six rounds of prescribed chemotherapy. Yippee!!!! I can say that now, but while I was going the the final round it felt almost anti-climactic. The first day we were late and that stressed me out. I couldn't understand why my chaperones didn't have the sense of urgency or anticipation that I had. Of course when you're late, things get off to a slow start even though you know they were expecting you.
Day 2 went smoothly with Sheryl as my nurse. What a blessing! She is calm and sweet and pays attention to every detail. My nephew, Robbie, kept me company and the morning flew by. I talked to Sheryl about whether or not to remove my port for the continuing maintenance program (Sheryl calls them tune-ups!) I would be on for the next two years. Being that I have shitty veins, keeping the port in is the way to go. I truly appreciated her honesty and that's why I like her.
As I left my last treatment, I thought I would be doing a jig or something but I wasn't. I guess lurking in the back of my mind was the fact that I still had to wait for that all telling pet scan in order to do my victory dance.
Day 2 went smoothly with Sheryl as my nurse. What a blessing! She is calm and sweet and pays attention to every detail. My nephew, Robbie, kept me company and the morning flew by. I talked to Sheryl about whether or not to remove my port for the continuing maintenance program (Sheryl calls them tune-ups!) I would be on for the next two years. Being that I have shitty veins, keeping the port in is the way to go. I truly appreciated her honesty and that's why I like her.
As I left my last treatment, I thought I would be doing a jig or something but I wasn't. I guess lurking in the back of my mind was the fact that I still had to wait for that all telling pet scan in order to do my victory dance.
Thursday, January 6, 2011
Will Round 6 be the Final Fix?
Round 5 kind of kicked my butt a bit. I didn't get sick from the treatments, thank god. I've just been much more tired. I am sure that part of it is the result of what everyone calls the cumulative effect-the more chemo you have, the weaker you may feel. The other contributing factor could be the holiday season. I certainly didn't let my cancer get in the way of having a great holiday. My kids were both coming home and I wanted the holiday to be great. . . and it was!
One of my Christmas gifts was a cold. I have been fighting this cold for several weeks and it is exhausting. One day I feel good and the next day I don't. The on-call doctor put me on antibiotics and my doctor took me off. He said my blood counts were fine and I should be set to go next week for round 6. Yet my nose keeps running. Ugh!
Round 6 is supposed to be my final round of chemo with the drug I fondly call the "Red Devil". When I showed some excitement about this, the doctor kind of said something like, "Well, let's wait and see. I'm sure all will be fine but we still have to wait for the Pet Scan results to be sure."
So, the Pet Scan should be at the beginning of February and I'm hoping that everyone will continue to pray for me and send very positive thoughts my way. They have sustained me thus far and I know they will carry me to the finish line!!
XO
One of my Christmas gifts was a cold. I have been fighting this cold for several weeks and it is exhausting. One day I feel good and the next day I don't. The on-call doctor put me on antibiotics and my doctor took me off. He said my blood counts were fine and I should be set to go next week for round 6. Yet my nose keeps running. Ugh!
Round 6 is supposed to be my final round of chemo with the drug I fondly call the "Red Devil". When I showed some excitement about this, the doctor kind of said something like, "Well, let's wait and see. I'm sure all will be fine but we still have to wait for the Pet Scan results to be sure."
So, the Pet Scan should be at the beginning of February and I'm hoping that everyone will continue to pray for me and send very positive thoughts my way. They have sustained me thus far and I know they will carry me to the finish line!!
XO
The Cost of Cancer
Craig and I are very fortunate in that we have always had very good medical insurance. We have never had to worry about high out of pocket medical expenses or being able to go to the doctor when necessary. We also had the opportunity and foresight to purchase several different policies from AFLAC, one being a cancer policy.
Every month we get a summary of the medical expenses for our records and every month it blows my mind. It is truly impossible to comprehend. Every month the bill total is around $25,000!!!!! What really blows my mind is that one single shot, which takes less than a minute to administer, costs $5,900! Really? How is that possible? How is it possible that one shot could cost more than the 4 hours of chemo I receive on Day 2 of each treatment?
The drug that I receive on Day 1 of each chemo treatment cost $8400, every three weeks. When I continue on my two year maintenance program, I will be receiving it every two months. That's over $100,000 not including the other drugs that go along with it!!!!!!
Let me stress again that these expenses are not causing us any undue stress as we only make a $40 co-pay each time I go to the doctor or chemo. We are very, very lucky. Our concern is-what do people do if they don't have good insurance? How can they possibly afford treatment for their cancer? We have overheard people in the waiting room talking about their struggle to even get to the doctor because they can't afford the gas to get there, let alone pay for their prescriptions and medical bills. It hurts our hearts to know this is happening to people.
As you all know, I believe in the power of positivity in the healing process. How can people be positive if they are worried about the cost? That is a terribly heavy burden to carry.
Every month we get a summary of the medical expenses for our records and every month it blows my mind. It is truly impossible to comprehend. Every month the bill total is around $25,000!!!!! What really blows my mind is that one single shot, which takes less than a minute to administer, costs $5,900! Really? How is that possible? How is it possible that one shot could cost more than the 4 hours of chemo I receive on Day 2 of each treatment?
The drug that I receive on Day 1 of each chemo treatment cost $8400, every three weeks. When I continue on my two year maintenance program, I will be receiving it every two months. That's over $100,000 not including the other drugs that go along with it!!!!!!
Let me stress again that these expenses are not causing us any undue stress as we only make a $40 co-pay each time I go to the doctor or chemo. We are very, very lucky. Our concern is-what do people do if they don't have good insurance? How can they possibly afford treatment for their cancer? We have overheard people in the waiting room talking about their struggle to even get to the doctor because they can't afford the gas to get there, let alone pay for their prescriptions and medical bills. It hurts our hearts to know this is happening to people.
As you all know, I believe in the power of positivity in the healing process. How can people be positive if they are worried about the cost? That is a terribly heavy burden to carry.
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