Friday, July 15, 2016
The Purple Tattoo: Wow, it's been a long time. Life moves quickly!
The Purple Tattoo: Wow, it's been a long time. Life moves quickly!: Wow, it has been a long time since I updated this blog! I guess I've just been living a normal post-cancer life and we all know it goes...
Wow, it's been a long time. Life moves quickly!
Wow, it has been a long time since I updated this blog! I guess I've just been living a normal post-cancer life and we all know it goes by too quickly. I recently had someone who found this blog online send me a message. A cancer patient I don't know, a complete stranger reached out. This happened a few times when I was blogging regularly, but this was recent. I was kind of surprised that a complete stranger wanted to know about my life post-cancer. That's really what prompted me to write. During treatment this blog was therapeutic and a way for me to share updates with friends and family. Little did I know that there were other people out there who read it and really wanted to know these personal things about someone they have never met.
I just celebrated 3 years cancer-free on June 20. I spent the day on the beach with two besties and it was absolutely amazing. I took some time to reflect as well. One thing for sure...cancer still impacts many areas of my life.
As I am still having PET scans every 6 months I find I coast along until just before my scans. Then the anxiety sets in. I don't sleep, I worry constantly. This year I had a lymph node around my clavicle swell up and that about put me over the edge. I've discussed this anxiety with my doc and he assures me this is 100% normal as do other survivors. At the three year mark I am told statistics for recurrence go waaayyyy down! That is good news! Now to make it to that 5 year mark and go from "remission" to what they consider cured. I also just found out that my oncologist is leaving FL Cancer Centers. This is upsetting. I put my life in his hands 3 years ago and he saved it...he is a safety net of sorts. It will be hard to trust someone else who steps in at this late date. There is a real bond between doctor patient. I have it with him as I do the doctor who delivered Lucas. They both changed my life.
Cancer/chemo is the gift that keeps on giving. The side effects can be long lasting. I've been doing some reading lately because I became worried that something was wrong. I have found that many people experience the fatigue and lethargy for years after chemo. I know I am not the same...not yet. I have also broken several teeth. I remember my dad talking about cancer and how chemo can make teeth brittle. Guess he was right.
Thanks to chemo I am experiencing early menopause. Wow...no one tells you how bad this little life event can be. I now know why some women are so cranky. This is no picnic. I have hot flashes throughout the day and they get worse at night. Most nights I see every hour on the clock either because I am sweating or because I have to pee. My brain is foggy..some say this is from menopause and some still blame this on chemo brain. Either way...it's not fun. My memory is not nearly what it used to be and it is frustrating. I have found that I have to write things down, make lists, etc. way more than before. Mark can attest to the fact that my brain is foggy. This week I have felt like I'm losing my mind so I've been in touch with the doctor and we are investigating HRT. My oncologist originally said no to this, but it is becoming a quality of life issue and the rewards outweigh the risks in my opinion. I seriously cannot take much more. Tonight is a perfect example. I went to be about 9:15 because I was absolutely exhausted. I was awake at 10:45, 11:30, 12:51 and now it's 3:22...I've been up for over an hour with no signs of going back to sleep soon...until of course it's 6am and I should be getting up. Then I'll be a zombie. It sucks and is really taking a toll. I also have developed really bad allergies. The last few years I have gotten really sick late winter/early spring and it has been determined that this has stemmed from allergies. The allergist says she has seen this in cancer patients. There is some thought behind the damage to immune systems from chemo and this could be why my allergies went from just a little bothersome to REALLY bad. I have also decided that once you have had cancer doctors are constantly paranoid about more cancer. Every little thing gets investigated or biopsied and blood is constantly tested. Better safe than sorry I guess.
I have recently had the opportunity to be a mentor to another Hodgkin's patient. When I finished treatment and got the "all clear" I registered to be a mentor through Immerman's Angels. This is a service which aligns people going through chemo with a mentor who has been through the same experiences. My mentee was a 46 year old woman from CA who is in the middle of treatment for the same cancer I had...same stage. She is receiving the same protocol I went through and we have spoken a few times. She was frightened an had questions that really could only be answered from someone who has actually been through it. It felt good to help. I no longer angel to pediatric cancer patients as I had in the past. After I went through treatment this became even more difficult emotionally than it had pre-cancer, not sure why. The last little boy I angeled for was only 3 and VERY sick with a poor prognosis...I just couldn't. Maybe it just became too personal and to think about a child and his parents having to deal with this was just too much for me. I know the reality of the disease, have been through the treatment, have felt like shit...can't imagine having to watch my child going through it. I feel like a coward...but it was just too much for me.
I am still trying to live a more conscious life and to be thankful that I am here and healthy to enjoy it. I stress the "trying" part. In our busy, stressful world this is not always easy and I often need to remind myself to stop and slow down and live in the present. It's easy to get caught up in the stress of everyday life. I am making a big effort to not stress the small stuff. No one cares if the house is not perfectly clean, no one cares that the laundry isn't done, but my family enjoys spending time together doing special things and this is what makes memories. I try to get to the beach more often as this is my favorite place. The only place my mind really stops and just lets me "be" and relax, Lucas is growing up so fast and it is truly a gift that I am here to witness it...for so many cancer patients this is not the case. I am fortunate and I don't ever want to forget it...to take it for granted. I am fully aware that life is a gift.
I just celebrated 3 years cancer-free on June 20. I spent the day on the beach with two besties and it was absolutely amazing. I took some time to reflect as well. One thing for sure...cancer still impacts many areas of my life.
As I am still having PET scans every 6 months I find I coast along until just before my scans. Then the anxiety sets in. I don't sleep, I worry constantly. This year I had a lymph node around my clavicle swell up and that about put me over the edge. I've discussed this anxiety with my doc and he assures me this is 100% normal as do other survivors. At the three year mark I am told statistics for recurrence go waaayyyy down! That is good news! Now to make it to that 5 year mark and go from "remission" to what they consider cured. I also just found out that my oncologist is leaving FL Cancer Centers. This is upsetting. I put my life in his hands 3 years ago and he saved it...he is a safety net of sorts. It will be hard to trust someone else who steps in at this late date. There is a real bond between doctor patient. I have it with him as I do the doctor who delivered Lucas. They both changed my life.
Cancer/chemo is the gift that keeps on giving. The side effects can be long lasting. I've been doing some reading lately because I became worried that something was wrong. I have found that many people experience the fatigue and lethargy for years after chemo. I know I am not the same...not yet. I have also broken several teeth. I remember my dad talking about cancer and how chemo can make teeth brittle. Guess he was right.
Thanks to chemo I am experiencing early menopause. Wow...no one tells you how bad this little life event can be. I now know why some women are so cranky. This is no picnic. I have hot flashes throughout the day and they get worse at night. Most nights I see every hour on the clock either because I am sweating or because I have to pee. My brain is foggy..some say this is from menopause and some still blame this on chemo brain. Either way...it's not fun. My memory is not nearly what it used to be and it is frustrating. I have found that I have to write things down, make lists, etc. way more than before. Mark can attest to the fact that my brain is foggy. This week I have felt like I'm losing my mind so I've been in touch with the doctor and we are investigating HRT. My oncologist originally said no to this, but it is becoming a quality of life issue and the rewards outweigh the risks in my opinion. I seriously cannot take much more. Tonight is a perfect example. I went to be about 9:15 because I was absolutely exhausted. I was awake at 10:45, 11:30, 12:51 and now it's 3:22...I've been up for over an hour with no signs of going back to sleep soon...until of course it's 6am and I should be getting up. Then I'll be a zombie. It sucks and is really taking a toll. I also have developed really bad allergies. The last few years I have gotten really sick late winter/early spring and it has been determined that this has stemmed from allergies. The allergist says she has seen this in cancer patients. There is some thought behind the damage to immune systems from chemo and this could be why my allergies went from just a little bothersome to REALLY bad. I have also decided that once you have had cancer doctors are constantly paranoid about more cancer. Every little thing gets investigated or biopsied and blood is constantly tested. Better safe than sorry I guess.
I have recently had the opportunity to be a mentor to another Hodgkin's patient. When I finished treatment and got the "all clear" I registered to be a mentor through Immerman's Angels. This is a service which aligns people going through chemo with a mentor who has been through the same experiences. My mentee was a 46 year old woman from CA who is in the middle of treatment for the same cancer I had...same stage. She is receiving the same protocol I went through and we have spoken a few times. She was frightened an had questions that really could only be answered from someone who has actually been through it. It felt good to help. I no longer angel to pediatric cancer patients as I had in the past. After I went through treatment this became even more difficult emotionally than it had pre-cancer, not sure why. The last little boy I angeled for was only 3 and VERY sick with a poor prognosis...I just couldn't. Maybe it just became too personal and to think about a child and his parents having to deal with this was just too much for me. I know the reality of the disease, have been through the treatment, have felt like shit...can't imagine having to watch my child going through it. I feel like a coward...but it was just too much for me.
I am still trying to live a more conscious life and to be thankful that I am here and healthy to enjoy it. I stress the "trying" part. In our busy, stressful world this is not always easy and I often need to remind myself to stop and slow down and live in the present. It's easy to get caught up in the stress of everyday life. I am making a big effort to not stress the small stuff. No one cares if the house is not perfectly clean, no one cares that the laundry isn't done, but my family enjoys spending time together doing special things and this is what makes memories. I try to get to the beach more often as this is my favorite place. The only place my mind really stops and just lets me "be" and relax, Lucas is growing up so fast and it is truly a gift that I am here to witness it...for so many cancer patients this is not the case. I am fortunate and I don't ever want to forget it...to take it for granted. I am fully aware that life is a gift.
Monday, September 15, 2014
World Lymphoma Day and My Turn to Give Back
It's been quite some time since I have posted to The Purple Tattoo. Since my last post I have actually gotten my purple tattoo and I am just over 1 year cancer-free. I have grown back my hair, I have been promoted at work and most of all I have been enjoying being well.
Today is World Lymphoma Day. Today survivors look back at their fight and are thankful for all the research and medical advancements that have made their fight successful. Today a Facebook group I belong to made up of survivors asked us to post pictures of our tattoos. I put my right out there! Everyday I look at that ribbon on my wrist, I rub my fingers across it and I am thankful.
It's no secret that cancer sucks! Chemo sucks. Being bald sucks. But underneath all of that cancer did bring me some good things. I found out just how tough I can be. I learned that I am stronger than I ever thought possible. I learned just how many wonderful people I have in my life. I found out that in the thick of it, when everything seems at its worst that my family and I can band together and get through it!
so today, on World Lymphoma Day I'm looking back and being thankful, but I am also thinking about all those people out there who are still fighting, who might not be as lucky as I am as well as those who have not yet been diagnosed. It's my turn to give back or to pay it forward.
I'm doing so by participating in Light the Night. This is the walk for the Lymphoma and Leukemia Society that will be taking place October 4 in Fort Myers. I have formed Team Purple Tattoo and we have some amazing people who will be joining us to celebrate!
If you would like to join us you are more welcome. If you would like to donate I am more than thankful. You can find our team page at the link below.
Team Purple Tattoo Fundraising page
XOXO,
Amy
Today is World Lymphoma Day. Today survivors look back at their fight and are thankful for all the research and medical advancements that have made their fight successful. Today a Facebook group I belong to made up of survivors asked us to post pictures of our tattoos. I put my right out there! Everyday I look at that ribbon on my wrist, I rub my fingers across it and I am thankful.
It's no secret that cancer sucks! Chemo sucks. Being bald sucks. But underneath all of that cancer did bring me some good things. I found out just how tough I can be. I learned that I am stronger than I ever thought possible. I learned just how many wonderful people I have in my life. I found out that in the thick of it, when everything seems at its worst that my family and I can band together and get through it!
so today, on World Lymphoma Day I'm looking back and being thankful, but I am also thinking about all those people out there who are still fighting, who might not be as lucky as I am as well as those who have not yet been diagnosed. It's my turn to give back or to pay it forward.
I'm doing so by participating in Light the Night. This is the walk for the Lymphoma and Leukemia Society that will be taking place October 4 in Fort Myers. I have formed Team Purple Tattoo and we have some amazing people who will be joining us to celebrate!
If you would like to join us you are more welcome. If you would like to donate I am more than thankful. You can find our team page at the link below.
Team Purple Tattoo Fundraising page
XOXO,
Amy
Monday, November 11, 2013
The Purple Tattoo: Life Post Chemo
The Purple Tattoo: Life Post Chemo: It's strange. In the last two weeks many people have asked about my blog. I just haven't been updating...no excuse really, just bu...
Life Post Chemo
It's strange. In the last two weeks many people have asked about my blog. I just haven't been updating...no excuse really, just busy with life.
As you know, I finished chemo on June 21 and was considered in remission at that time. I had my port removed and resumed normal life. Since then, I have continued to feel better. My hair is growing back, energy levels are getting better all the time life had pretty much returned to normal.
I had a little scare a couple months post chemo. I felt a swollen lymph node. I went into the doctor and he sent me for CT scans. Everything looked stable. He then set up PET Scans for tomorrow.
I also started having horrible abdominal pains. I mean HORRIBLE...rolling around moaning, nothing can make it feel better kind of abdominal pain. I was sent to the gastroenterologist. She did an endoscopy and ultrasound. Ultrasound showed fatty liver and she thought I might be having gallbladder issues. She ordered a gallbladder test to investigate further. I haven't had that done yet. Other things got in the way.
On October 6 I drove up to Orlando for a work event. As I was walking to the Dolphin Hotel, the heel of my shoe got stuck in a crack in the sidewalk. Down I went. I left the Dolphin on a stretcher, was put into the ambulance and taken to Celebration Hospital. It turns out I broke the fifth metatarsel and tore a ligament. I had surgery on the 18th (my birthday) to fix both injuries and walked away with pins, screws and anchors in my foot. I am still not allowed to walk on it or drive. This is the same foot which has had two previous foot and ankle surgeries in 2010 and 2011. Ugh!
Now, I am scheduled for PET scans tomorrow and will get results on the 18th. I am a nervous wreck, which I understand is pretty typical and normal for cancer survivors. There is always that fear, that little piece of my mind that is scared to death they will tell me it's back again. I am terrified of being told I have cancer again. I don't think that fear will ever go away.
I did it once, I did it well. I got through chemo, kept a very positive attitude, stayed strong, kept life fairly normal for my son and beat this stupid disease. Not sure I have the strength to do it a second time. I have this underlying fear that if I have it a second time I will not survive. Rational or not...the fear is there.
I've continued to work through it all and have done well at my job. I honestly feel I haven't missed a beat there. It looks like my year is going to end with great reward!! I am lucky to work with an amazing group of people who have been nothing but supportive throughout this journey.
I went back to being a Chemo Angel. I had done this before I got sick. My first patient was a boy with Hodgkin's as ironic as that seems. He graduated and then I got sick and never put in for a new assignment. Once finished with my own chemo I got back in touch and got a new assignment. I am currently angeling for a 2 year old boy who has an inoperable brain stem tumor and has had some other horrible things happen along the way as well. I love this work, I love the chance to make a child going through the worst smile if even for just a little while.
I've changed. I've changed a lot. Most of you wouldn't know just by talking to me, but I've changed. It's to be expected. I don't let things get to me that would have before cancer. I have a more positive attitude than ever before and honestly feel like I am in a better place than ever before. I am more grateful for my family and friends and of course more grateful for my life. I found out that I am a much stronger person than I ever imagined I could be. When I went in for my biopsy last December 28 I thought that if I had cancer I'd never get through it...it would be awful. Well, it was awful, but I got through it and it and came out okay in the end.
Through this experience I made a lot of new friends and old friendships grew or were solidified beyond my wildest imagination. I have extraordinary people in my life and I will be forever grateful for all of them. My family has been amazingly supportive even when things got hard for them. Mark has been amazing. He has had to take care of both Lucas and I and has done a great job.
While cancer definitely sucks, I can say that in a way I feel lucky. I feel lucky that I have gotten to see so much good in people. I am lucky that I learned such amazing lessons about myself. I am lucky that I have great doctors who helped me beat this.
I am looking forward to good news next week when I get my PET scan results. I'm looking forward to Thanksgiving as I have SOOOO much to be thankful for this year. I am also looking forward to saying good-bye to 2013 and ringing in a new year full of good health and time with my family and friends.
I'll try to update again after I get my results. I have a lot to say....there's so much I could write about, but I'm just busy living life.
As you know, I finished chemo on June 21 and was considered in remission at that time. I had my port removed and resumed normal life. Since then, I have continued to feel better. My hair is growing back, energy levels are getting better all the time life had pretty much returned to normal.
I had a little scare a couple months post chemo. I felt a swollen lymph node. I went into the doctor and he sent me for CT scans. Everything looked stable. He then set up PET Scans for tomorrow.
I also started having horrible abdominal pains. I mean HORRIBLE...rolling around moaning, nothing can make it feel better kind of abdominal pain. I was sent to the gastroenterologist. She did an endoscopy and ultrasound. Ultrasound showed fatty liver and she thought I might be having gallbladder issues. She ordered a gallbladder test to investigate further. I haven't had that done yet. Other things got in the way.
On October 6 I drove up to Orlando for a work event. As I was walking to the Dolphin Hotel, the heel of my shoe got stuck in a crack in the sidewalk. Down I went. I left the Dolphin on a stretcher, was put into the ambulance and taken to Celebration Hospital. It turns out I broke the fifth metatarsel and tore a ligament. I had surgery on the 18th (my birthday) to fix both injuries and walked away with pins, screws and anchors in my foot. I am still not allowed to walk on it or drive. This is the same foot which has had two previous foot and ankle surgeries in 2010 and 2011. Ugh!
Now, I am scheduled for PET scans tomorrow and will get results on the 18th. I am a nervous wreck, which I understand is pretty typical and normal for cancer survivors. There is always that fear, that little piece of my mind that is scared to death they will tell me it's back again. I am terrified of being told I have cancer again. I don't think that fear will ever go away.
I did it once, I did it well. I got through chemo, kept a very positive attitude, stayed strong, kept life fairly normal for my son and beat this stupid disease. Not sure I have the strength to do it a second time. I have this underlying fear that if I have it a second time I will not survive. Rational or not...the fear is there.
I've continued to work through it all and have done well at my job. I honestly feel I haven't missed a beat there. It looks like my year is going to end with great reward!! I am lucky to work with an amazing group of people who have been nothing but supportive throughout this journey.
I went back to being a Chemo Angel. I had done this before I got sick. My first patient was a boy with Hodgkin's as ironic as that seems. He graduated and then I got sick and never put in for a new assignment. Once finished with my own chemo I got back in touch and got a new assignment. I am currently angeling for a 2 year old boy who has an inoperable brain stem tumor and has had some other horrible things happen along the way as well. I love this work, I love the chance to make a child going through the worst smile if even for just a little while.
I've changed. I've changed a lot. Most of you wouldn't know just by talking to me, but I've changed. It's to be expected. I don't let things get to me that would have before cancer. I have a more positive attitude than ever before and honestly feel like I am in a better place than ever before. I am more grateful for my family and friends and of course more grateful for my life. I found out that I am a much stronger person than I ever imagined I could be. When I went in for my biopsy last December 28 I thought that if I had cancer I'd never get through it...it would be awful. Well, it was awful, but I got through it and it and came out okay in the end.
Through this experience I made a lot of new friends and old friendships grew or were solidified beyond my wildest imagination. I have extraordinary people in my life and I will be forever grateful for all of them. My family has been amazingly supportive even when things got hard for them. Mark has been amazing. He has had to take care of both Lucas and I and has done a great job.
While cancer definitely sucks, I can say that in a way I feel lucky. I feel lucky that I have gotten to see so much good in people. I am lucky that I learned such amazing lessons about myself. I am lucky that I have great doctors who helped me beat this.
I am looking forward to good news next week when I get my PET scan results. I'm looking forward to Thanksgiving as I have SOOOO much to be thankful for this year. I am also looking forward to saying good-bye to 2013 and ringing in a new year full of good health and time with my family and friends.
I'll try to update again after I get my results. I have a lot to say....there's so much I could write about, but I'm just busy living life.
Monday, June 17, 2013
The Purple Tattoo: Goodbye Chemo Amy
The Purple Tattoo: Goodbye Chemo Amy: I cannot believe that in just a few days I will complete my final treatment. I will be done. I will ring that bell and leave cancer-free, ...
Goodbye Chemo Amy
I cannot believe that in just a few days I will complete my final treatment. I will be done. I will ring that bell and leave cancer-free, hopefully forever. I will no longer be fighting cancer...I will be a SURVIVOR! It is amazing. It brings me to tears in just a few short sentences. I cannot believe it on so many levels. I cannot believe first of all that I had cancer and had to go through this in the first place. I cannot believe that I have done as well as I have. I cannot believe how hard it has been. I cannot believe how much I have learned about myself and others on this journey. I cannot believe that the end is so near. I cannot believe that next week I will no longer be treating cancer. So, now what?
Its strange to think that for six months my life has basically revolved around getting rid of this stupid disease. I have lived essentially from treatment to treatment trying to not really think too far in advance. It is strange to think that when I leave the cancer center on Friday after my shot I won't be going back for a few months until I get my scans. It's like going from 100 to 0 over night. Of course, I am jumping up and down celebrating the fact that this day is coming, but it is also VERY scary. Kate warned me of this and she was spot on. It's scary to think that now I will be doing NOTHING to fight cancer. How do I know it is not in there just dwelling and waiting for me to stop chemo so it can grow again? FREAKY feeling. I know that for a while I will now live in fear from scan to scan worried that it will come back.
So, I go Thursday for my final chemo. When I am done Mark, Lucas, Mom, Jim and my dear friend Jamie will come to watch me "ring the bell." For those of you unfamiliar...when you finish your last chemo you ring a ceremonial bell to mark the occassion! They will be there to celebrate this moment with me. I think we will have cake. Lucas thinks every celebration MUST include cake! I will then go home and crash and suffer side effects and sleep for three days. Mark calls this person who will appear "Chemo Amy." This will be her last appearance folks. I'm hoping we won't ever have to see that girl again!
I cry just thinking about it. What a journey this has been for me. I have learned alot. As I said, I've learned a lot about myself and others. That's another entry...next week. I want to share with everyone who has been reading all the things I have learned. All the wonderful things I have seen in others as they share and offer help. I'll also talk a little about how cancer has changed me and what I've learned about myself and what comes next for me.
BUT FOR NOW LET'S CELEBRATE THAT IT IS ALMOST OVER...THIS IS THE LAST TIME...THURSDAY I RING THE BELL AND RUN LIKE HELL!!! Woo hoo!!!
Its strange to think that for six months my life has basically revolved around getting rid of this stupid disease. I have lived essentially from treatment to treatment trying to not really think too far in advance. It is strange to think that when I leave the cancer center on Friday after my shot I won't be going back for a few months until I get my scans. It's like going from 100 to 0 over night. Of course, I am jumping up and down celebrating the fact that this day is coming, but it is also VERY scary. Kate warned me of this and she was spot on. It's scary to think that now I will be doing NOTHING to fight cancer. How do I know it is not in there just dwelling and waiting for me to stop chemo so it can grow again? FREAKY feeling. I know that for a while I will now live in fear from scan to scan worried that it will come back.
So, I go Thursday for my final chemo. When I am done Mark, Lucas, Mom, Jim and my dear friend Jamie will come to watch me "ring the bell." For those of you unfamiliar...when you finish your last chemo you ring a ceremonial bell to mark the occassion! They will be there to celebrate this moment with me. I think we will have cake. Lucas thinks every celebration MUST include cake! I will then go home and crash and suffer side effects and sleep for three days. Mark calls this person who will appear "Chemo Amy." This will be her last appearance folks. I'm hoping we won't ever have to see that girl again!
I cry just thinking about it. What a journey this has been for me. I have learned alot. As I said, I've learned a lot about myself and others. That's another entry...next week. I want to share with everyone who has been reading all the things I have learned. All the wonderful things I have seen in others as they share and offer help. I'll also talk a little about how cancer has changed me and what I've learned about myself and what comes next for me.
BUT FOR NOW LET'S CELEBRATE THAT IT IS ALMOST OVER...THIS IS THE LAST TIME...THURSDAY I RING THE BELL AND RUN LIKE HELL!!! Woo hoo!!!
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