Hello hello,
Not sure if anyone still checks in here, but I figured I needed to bring some closure to this blog since I sort of left it hanging after my treatment ended. It was certainly a wild ride, and it is strange to think that I'm already 3 months away from it all. Here's what's been going on in my post-cancer life:
I wrapped up treatment on October 19th, and was thrilled to see a cancer-free CTscan at my follow up visit in November. It was so shocking to look at my original scans next to the new ones and see how much disease had been in me when I first started this process. My entire chest cavity, from neck to stomach, was filled with shadowy blackness in the image from May, and all those shadows are now gone :)
About 2 weeks ago I returned to Helen Graham for another check-up. This time I got a chest x-ray and blood work. I had to go alone because my parents were both working, and I must say I was a tad nervous sitting in the waiting room to be called back. I felt fine, but you just never know...I mean I never thought I would get cancer in the first place! Happily, I received all good news. There are no changes in my scans since my x-ray in November. There is still one abnormal area that appears to be scar tissue, but that can take time to deteriorate. It hasn't grown, and I'm just going to keep praying that there aren't any cancer cells hiding away inside it. Dr. Guarino said my chest x-ray looks like that of any other average, healthy 22-year-old now. Hooray!!
In addition to that happy news, I also got my grades back from my first semester at law school. I was bracing myself for disappointment, but I got another pleasant surprise. I made it into the top 1/3 of my class, and came just a few points shy of making the Dean's List :) I was honestly shocked and signed back into my WebAdvisor account again to see if there had been some mistake. It was no mistake though. I was SO excited. Hopefully I can keep up the good work from here on out. I'm just relieved to have passed! haha
So things have been going very well overall. Aside from school, I made it my New Year's resolution to get back in shape. I honestly have never made a New Year's resolution before, because the general concensus seems to be that they usually never work out. So far so good though. I have been going to the gym 5 times a week, taking step and kickboxing classes, running and doing strength training. Yesterday I ran 2.5 miles at the park with my dad. That isn't much, but back when I was sick I couldn't even run half a mile without collapsing because of my lung, so it felt AMAZING to go that far. I've lost about 5 pounds, and I've definitely gained a lot of muscle, so I am really pleased with my progress.
I think being sick makes you appreciate the ability to exercise in a way that I certainly never did before. I don't see it as a chore now. I am just thrilled to be physically able to do it. I have also tried to adapt healthier eating habits. I know that back in the begining I said I was giving up on health and resolving to eat cookie dough for the rest of my life, but I've changed my mind now. If I'm going to keep on living, which I fully intend to do, then I want to feel good about it. Getting exercise and eating well has made me feel both physically and more importantly mentally healthier. It's been almost a month and a half since I started this 5-day-gym routine, and I don't see myself backing out of my resolution any time soon.
So anyway, that's all my news for now. In summary, life is wonderful. I have a fantastic family, beautiful friends, a loving boyfriend, I'm getting a great education, and I'm feeling healthier than ever. Now I just need to work on finding a summer job . . . haha.
Until next time, I hope you are all as happy and healthy as I am feeling these days!
Lots of love,
Lauren
Sunday, February 10, 2008
Friday, October 19, 2007
A day for celebration!!
Hello everyone,
2 reasons for celebration tonight...
1. Our team raised over $3,500 for the Leukemia & Lymphoma Society's Light the Night Walk, putting us among the top 10 teams fundraising teams!!! I have received several additional donations in the mail (which I can still submit), so this number continues to climb. Approximately 50 friends and family contributed to the grand total, which absolutely blew me away. I had set my original goal at $500. I continue to be overwhelmed by the outpouring of generosity and support that I have received in my journey toward healing. THANK YOU THANK YOU THANK YOU from the bottom of my heart. I wish you all could have been there to share in the magic of the event with me. It was amazing!
16 of us were there representing Lauren's NHL All-Stars: my parents, Dan, my best friend Chiya, both my grandmothers and George, Aunt Kelly and Uncle Dan and the girls, Aunt Pat and Uncle Will, Kate and cousin Dan...and me, of course :) We carried a banner displaying our team name, and balloons with tiny lights in them that lit up the night sky. There was a ton of food, games, and the largest crowd ever: over 3,500 walkers. That must be the magic number. I had a white "survivor" balloon and a survivor t-shirt as well. I'm not sure that I can technically call myself cured yet, but I feel I'm fighting a winning battle.
The most moving part of the night for me was seeing my face on the wall of heroes beside pictures of both of my grandfathers who passed away after battles with NHL and other cancers. I know they were marching beside me in spirit and cheering me on toward the finish line.
This brings me to my second reason for celebration...
I'M FINISHED WITH CHEMO!!!!!!
Today I completed my final cycle of CHOP treatment. It was a short visit, and it was hard to believe that it will be my last (hopefully forever!). Everyone was congratulating me and telling me how healthy I look. It was such a joyful experience. I can remember how 6 months of chemo looked like an eternity to me when I first began this process, but now here I am, and it feels like it all went by so quickly. I am told that years from now, I will look back, and this will all just seem like a bad dream. But as I have said in the past, it has been just as much a blessing as a curse.
It felt almost bittersweet when I walked out of the Helen Graham Cancer Center today. The people there have become my friends, and have literally held my hand through some of the most trying moments of my life. I really am going to miss seeing them, and miss their warmth and their nurturing. I hugged all of the nurses goodbye today. They made this experience bearable. They made me laugh. I am so grateful to have met them, and they have taught me so much about giving to others. If law school proves to be the wrong choice, I think nursing seems like a very rewarding profession: a career where you go home every day knowing you've really made a difference. I hope they know what a difference they made to me. They saved my life.
My #1 hero, of course, is Dr. Guarino. He has been phenomenal. Truly phenomenal. Words cannot even express how grateful I am to him for his guidance, his knowledge, his humor, and his care. Today his nurse was telling me that he is consistently the last doctor to finish rotations at the end of the night. He never turns anyone away. I am blessed to have my life in the hands of someone so brilliant and compassionate.
So what happens now? Now I wait and see. I go back in 3 weeks for scans to check my status after this final round, and if all is clear, I'll go back every 2 months or so for check-ups. If I relapse, then we move right to a new chemo cocktail and stem cell transplant. But as Dr. G says, that's a bridge we'll cross when we come to it, and we're not going to come to it.
I guess this means I can start getting back to "normal" life . . . although I guess this is normal life: dealing with the curveballs that you're thrown, and making the most of each day. All the same, I can't wait to have my hair back, and get back in shape, and not be always thinking about where I am in my chemo cycle, and how low my white blood cell counts are, and what pills to take. I think I am going to be paranoid about relapsing for a long time though. I had a cold a few weeks ago, and I was so nervous that the cough was not going to go away, like the persistent cough that I had before my diagnosis. But it went away :)
Some sad news, however...I recently learned that this crazy cancer journey has just begun for someone that I love dearly: Mrs. Mahler, Dan's mom. Mrs. Mahler was diagnosed with breast cancer just this past week. Luckily, they seem to have caught it early. Please please please keep her in your thoughts and prayers!!! And pray for the Mahler family and Dan too. I can only imagine how frustrating and upsetting it must be to watch two of the leading ladies in your life deal with this disease. It is truly relentless, but I have found that love and support are the best medicine. So please send all your love and support their way!
I will continue to update this journal, even though my treatment is over. The healing process is beginning, and I want to keep you all posted on my progress. I was excited to discover that some of my hair has already started to grow back! I have a healthy coating of peach fuzz on my head now, so I am keeping my fingers crossed that it will be as red as it ever was. It's nice to see new life and regeneration after all of this :)
A million thank-yous and God bless you, truly, for being my sources of strength and for every prayer and every word of support. I know that all you have given will come back to you ten fold, and that you are my heroes.
Tons of love to everyone,
Lauren
2 reasons for celebration tonight...
1. Our team raised over $3,500 for the Leukemia & Lymphoma Society's Light the Night Walk, putting us among the top 10 teams fundraising teams!!! I have received several additional donations in the mail (which I can still submit), so this number continues to climb. Approximately 50 friends and family contributed to the grand total, which absolutely blew me away. I had set my original goal at $500. I continue to be overwhelmed by the outpouring of generosity and support that I have received in my journey toward healing. THANK YOU THANK YOU THANK YOU from the bottom of my heart. I wish you all could have been there to share in the magic of the event with me. It was amazing!
16 of us were there representing Lauren's NHL All-Stars: my parents, Dan, my best friend Chiya, both my grandmothers and George, Aunt Kelly and Uncle Dan and the girls, Aunt Pat and Uncle Will, Kate and cousin Dan...and me, of course :) We carried a banner displaying our team name, and balloons with tiny lights in them that lit up the night sky. There was a ton of food, games, and the largest crowd ever: over 3,500 walkers. That must be the magic number. I had a white "survivor" balloon and a survivor t-shirt as well. I'm not sure that I can technically call myself cured yet, but I feel I'm fighting a winning battle.
The most moving part of the night for me was seeing my face on the wall of heroes beside pictures of both of my grandfathers who passed away after battles with NHL and other cancers. I know they were marching beside me in spirit and cheering me on toward the finish line.
This brings me to my second reason for celebration...
I'M FINISHED WITH CHEMO!!!!!!
Today I completed my final cycle of CHOP treatment. It was a short visit, and it was hard to believe that it will be my last (hopefully forever!). Everyone was congratulating me and telling me how healthy I look. It was such a joyful experience. I can remember how 6 months of chemo looked like an eternity to me when I first began this process, but now here I am, and it feels like it all went by so quickly. I am told that years from now, I will look back, and this will all just seem like a bad dream. But as I have said in the past, it has been just as much a blessing as a curse.
It felt almost bittersweet when I walked out of the Helen Graham Cancer Center today. The people there have become my friends, and have literally held my hand through some of the most trying moments of my life. I really am going to miss seeing them, and miss their warmth and their nurturing. I hugged all of the nurses goodbye today. They made this experience bearable. They made me laugh. I am so grateful to have met them, and they have taught me so much about giving to others. If law school proves to be the wrong choice, I think nursing seems like a very rewarding profession: a career where you go home every day knowing you've really made a difference. I hope they know what a difference they made to me. They saved my life.
My #1 hero, of course, is Dr. Guarino. He has been phenomenal. Truly phenomenal. Words cannot even express how grateful I am to him for his guidance, his knowledge, his humor, and his care. Today his nurse was telling me that he is consistently the last doctor to finish rotations at the end of the night. He never turns anyone away. I am blessed to have my life in the hands of someone so brilliant and compassionate.
So what happens now? Now I wait and see. I go back in 3 weeks for scans to check my status after this final round, and if all is clear, I'll go back every 2 months or so for check-ups. If I relapse, then we move right to a new chemo cocktail and stem cell transplant. But as Dr. G says, that's a bridge we'll cross when we come to it, and we're not going to come to it.
I guess this means I can start getting back to "normal" life . . . although I guess this is normal life: dealing with the curveballs that you're thrown, and making the most of each day. All the same, I can't wait to have my hair back, and get back in shape, and not be always thinking about where I am in my chemo cycle, and how low my white blood cell counts are, and what pills to take. I think I am going to be paranoid about relapsing for a long time though. I had a cold a few weeks ago, and I was so nervous that the cough was not going to go away, like the persistent cough that I had before my diagnosis. But it went away :)
Some sad news, however...I recently learned that this crazy cancer journey has just begun for someone that I love dearly: Mrs. Mahler, Dan's mom. Mrs. Mahler was diagnosed with breast cancer just this past week. Luckily, they seem to have caught it early. Please please please keep her in your thoughts and prayers!!! And pray for the Mahler family and Dan too. I can only imagine how frustrating and upsetting it must be to watch two of the leading ladies in your life deal with this disease. It is truly relentless, but I have found that love and support are the best medicine. So please send all your love and support their way!
I will continue to update this journal, even though my treatment is over. The healing process is beginning, and I want to keep you all posted on my progress. I was excited to discover that some of my hair has already started to grow back! I have a healthy coating of peach fuzz on my head now, so I am keeping my fingers crossed that it will be as red as it ever was. It's nice to see new life and regeneration after all of this :)
A million thank-yous and God bless you, truly, for being my sources of strength and for every prayer and every word of support. I know that all you have given will come back to you ten fold, and that you are my heroes.
Tons of love to everyone,
Lauren
Tuesday, September 11, 2007
help needed
Important newsflash!
In honor of my battle with lymphoma, and in memory of both of my grandfathers who passed away from NHL (and other cancers), I am participating in the Leukemia & Lymphoma Society's annual Light the Night Walk at A.I. duPont Hospital for children here in Wilmington. The event is on September 29th, with registration beginning at 5pm and the walk at 7pm.
I am fundraising for the event to help support cancer research and hopefully save lives. Cancer has touched us all in one way or another, and I have seen first-hand how much we still have to learn about its treatment. So I'm posting the link to my donation page on here in hopes that you will take a minute to check it out and consider helping me by making a donation, joining my team, or fundraising as an individual. Here's how you can help:
To make a donation, select a suggested amount or type in your own on my page:
http://www.active.com/donate/ltnWilmin1/2123_LMOCONNNELL
It's quick and easy and very secure. You can also send me donations by mail if you would feel more comfortable doing so. My goal is to raise $500 in the next 2 weeks, so any help would be GREATLY appreciated!
You can also join my team, "Lauren's NHL All-Stars," at:
http://teams.lightthenight.org/LaurensNHLAllStars
Joining my team means that you can participate in the actual event with me or help me by fundraising on your own donation page. Or you can simply pass on my links to anyone who might be interested. Any little bit helps :)
It's scary to think about, but if it weren't for fundraising campaigns like this, I might not be here today. As recently as the 70s, most people diagnosed with lymphoma didn't survive, even those who were diagnosed young and otherwise healthy like me. The research advances have been remarkable. But doctors still have little understanding of what causes lymphoma or why its occurrence has been spreading so rapidly in recent years. With my chances of relapse at 40%, this cause is truly a matter of life or death for me. So please consider helping in any way you can. It would mean the world to me.
I have to get some sleep now, but I am SO excited for this event. I think it will be very uplifting for me to see the Delaware community come together to address this issue and show support for cancer research. Plus it's always beautiful seeing the night lit up by all the glowing balloons.
I hope everyone is having a good week. School and my job are going well, and my 6th round of chemo went smoothly. My last 2 rounds will only be about 2 hours long each since I'm not getting one of the drugs anymore. Hooray!!
I'm in the home stretch, I hope...keep the prayers coming.
Love to all,
Lauren
In honor of my battle with lymphoma, and in memory of both of my grandfathers who passed away from NHL (and other cancers), I am participating in the Leukemia & Lymphoma Society's annual Light the Night Walk at A.I. duPont Hospital for children here in Wilmington. The event is on September 29th, with registration beginning at 5pm and the walk at 7pm.
I am fundraising for the event to help support cancer research and hopefully save lives. Cancer has touched us all in one way or another, and I have seen first-hand how much we still have to learn about its treatment. So I'm posting the link to my donation page on here in hopes that you will take a minute to check it out and consider helping me by making a donation, joining my team, or fundraising as an individual. Here's how you can help:
To make a donation, select a suggested amount or type in your own on my page:
http://www.active.com/donate/ltnWilmin1/2123_LMOCONNNELL
It's quick and easy and very secure. You can also send me donations by mail if you would feel more comfortable doing so. My goal is to raise $500 in the next 2 weeks, so any help would be GREATLY appreciated!
You can also join my team, "Lauren's NHL All-Stars," at:
http://teams.lightthenight.org/LaurensNHLAllStars
Joining my team means that you can participate in the actual event with me or help me by fundraising on your own donation page. Or you can simply pass on my links to anyone who might be interested. Any little bit helps :)
It's scary to think about, but if it weren't for fundraising campaigns like this, I might not be here today. As recently as the 70s, most people diagnosed with lymphoma didn't survive, even those who were diagnosed young and otherwise healthy like me. The research advances have been remarkable. But doctors still have little understanding of what causes lymphoma or why its occurrence has been spreading so rapidly in recent years. With my chances of relapse at 40%, this cause is truly a matter of life or death for me. So please consider helping in any way you can. It would mean the world to me.
I have to get some sleep now, but I am SO excited for this event. I think it will be very uplifting for me to see the Delaware community come together to address this issue and show support for cancer research. Plus it's always beautiful seeing the night lit up by all the glowing balloons.
I hope everyone is having a good week. School and my job are going well, and my 6th round of chemo went smoothly. My last 2 rounds will only be about 2 hours long each since I'm not getting one of the drugs anymore. Hooray!!
I'm in the home stretch, I hope...keep the prayers coming.
Love to all,
Lauren
Monday, September 3, 2007
decision time
Hello again!
I suppose I should update on the big events of this past week. First I must say that I had an amazing weekend. I have a new job at the library at my law school working 3 days a week for a total of 15 hours. I am SO happy to be working again!! I basically get paid to do my homework, and it is very peaceful. Working there has provided me with some much-needed quiet time to think and study. It's great :) Classes have also been going extremely well.
In addition to working this weekend, my parents, Dan and I finally made it down to Middletown to see Uncle John and Aunt Kara and their adorable bulldogs. We went for a ride on their new boat on the Bohemia river. It was an absolutely perfect day out on the water. We had some snacks and drinks and enjoyed the breeze and the sunshine. It was so much fun! Then we headed back to their house for a delicious dinner of home-made ceasar salad and pasta with shrimp. It was sooooo good. Words cannot do that meal justice. haha It was a wonderful evening all around.
Today Dan and I went to a labor day picnic at the residence of the oblates of St. Francis DeSales, who run Salesianum High School and Nativity Prep, where Dan will be teaching starting tomorrow. We had such a good time. They grilled burgers and hotdogs and we sat and enjoyed mojitos in the shade of their garden. Quite a nice way to spend the holiday. We also stopped by Dan's family's house for some key lime pie and then headed back to Dan's new place to watch Lost. The Bobbitt's lent me the first season on DVD, and Dan and I have both become addicted!
Anyway, on to serious matters. The time has finally come for me to make up my mind about whether or not to have the stem cell transplant.
This past week I had my CT scan, PET scan, and my meeting with Dr. G to review their results. It was a little bit hectic trying to work my visits to the hospital around my law school classes, but thankfully everything worked out. I had the CT scan immediately after class on Monday, which of course meant a delicious lunch of barium sulfate for me. haha I can't wait to never have to drink that nasty stuff again.
My PET scan was scheduled bright and early at 6:30am on Tuesday. That procedure takes about 2 hours: 1 hour for the radioactive fluid to be given to me by IV, another 30 minutes for the actual scan, plus the time it takes to do all the prep inbetween. They bundled me in blankets and then strapped me down with velcro and pads molded to hold my head and legs in place in order to keep me as still as possible. The PET scan machine is like a doughnut, similar to a CT scan, but longer and more narrow. My arms actually grazed the sides and I could feel my breath bouncing off the ceiling above me. I'm glad I was able to zone out. The PET scan gives my doctor the ability to specifically detect cancerous areas in my body. It shows a blurry image of my body, and anything cancerous shows up as a shadow. It's very new technology and pretty amazing. After the scan was over, I rushed home and grabbed some breakfast, and then headed to school.
On Thursday I met with Dr. G after school to hear the results of my scans and discuss where to go from there. Mom, Dad and Dan all came along to support me :) Thankfully the news was all good. My scans appear to be clear, except for one slight "area of concern" on the PET scan. Dr. G said that he would call it a clear scan, but it is likely that microscopic cancer cells probably still exist inside my chest since the original mass was so big. After 5 rounds of chemo, a bit more treatment is necessary before I can call myself cancer-free, but that is to be expected since I was stage 3.
The CT scan showed that the small mass in the center of my chest shrank ever so slightly since my last CT scan, and still appears to be only scar tissue. Hooray! So although I'm not out of the woods entirely, this is most certainly the best possible news I could hope for at this stage. I was so happy!
Then it was time to talk business...
From here on out, the real test begins. We don't want just shrinkage, we want a complete cure. How to achieve that is really a guessing game now. Doctors don't have enough conclusive evidence to show that stem cell transplants increase survival rates, but I am part of a clinical trial that is investigating this possibility. If I stay on the trial, I have a 50/50 chance of being selected for a transplant, but it comes with a price. There are many risks, as I have explained previously. The biggest of these being permanent heart damage and total loss of fertility.
Dr. G did his best to give me the most unbiased answers to all of my questions, but I sensed that he felt it would be best for me to procede with another 3 rounds of standard R-CHOP chemo. We asked TONS of questions, but in the end there really are no right answers. So much about the treatment of cancer remains a mystery. My dad asked "what would you do if this were your daughter?" and Dr. G would not say. No one knows yet if stem cell transplants really provide any significant benefit, and it would be wrong for him to influence my decision without this knowledge. But in the end, knowing all the risks and costs involved and the fact that there is no conclusive proof of benefits at this time, I am opting to not have the transplant.
While I have sp0ken with several people who said that having the transplant was the best decision they could have made, I also know that Jason Schiable (the Loyola student who recently passed away from Hodgkins) had the transplant and still wasn't cured. So who really knows if it makes a difference or not. I would love to help science find an answer to that question, but as Dan pointed out, there are people who have had more time on this earth and are better qualified to participate in that experiment than I.
As it stands, Dr. G thinks I have about a 40% chance of relapsing based on the fact that my cancer was so far along to begin with. He explained that most patients who relapse are not successfully cured by second round treatment....which is scary to think about. If the day comes when I do relapse (and I pray it never does!), I will receive a different coctail of drugs and then a stem cell transplant. These procedures are pretty much last resorts, and most cancers that don't respond to R-CHOP are too aggressive to respond to these treatments either.
::sigh::
So it was a bittersweet day. I left feeling reassured and also scared. A body can only take so much poison, and once my chemo is done, I have to hope my cells are healthy enough to keep the cancer away on their own. Tomorrow I will call Dr. G and give him my decision to remove myself from the clinical trial and procede with standard treatment. I pray that I have made the right choice. I know that whatever is meant to happen will happen. I truly believe God has a plan.
I am doing my best not to think about all of this, and just allow myself to be guided down whatever path I'm meant to travel. I am SO thankful that I have had and continue to have so many happy, healthy days. Most cancer patients are not so fortunate. Let's hope that it is nothing but downhill smooth sailing from here on out.
I should say though, that having considered the possibility of death, I am scared and yet not scared. I know this is not the happiest subject, but it's something I have to think about, and thinking about it has made me come to a somewhat comforting realization. We're all going to die, and some people will die without any warning. I am really thankful that this darn disease has given me a kick in the pants to truly enjoy life while I can. You just never know. We are all in the same boat. We never know when our time in this life will come to an end, so we might as well treat each day as the gift that it is.
On that note, I watched an amazing documentary on TLC this past week called "Crazy, Sexy Cancer." If you missed it, I highly suggest buying the book or writing to TLC and asking them to air it again. It was AMAZING!! A young woman named Kris Carr, who also has a blog (http://www.crazysexycancer.blogspot.com/), filmed her search for healing after being diagnosed with a very rare and uncurable slow-growing cancer. She is in her early 30s and was pursuing her acting career in New York when she was diagnosed. She is a true inspiration, and I guarantee you will fall in love with her after seeing the film. She just has such an amazing spirit, and she meets several other women during the course of the film who are also battling cancer and teach her a lot about perseverence and finding happiness. It is just amazing to see Kris transform as she examines all the ways that cancer has cursed and yet simultaneously blessed her life. I kept thinking "that's exactly how I feel!! that's what I am going through!" the whole time I was watching it. It is an amazing look at how cancer helped Kris find herself, find love, and find her own "cure."
During the documentary, Kris asks the question "Why, when we are challenged to survive, do we give ourselves permission to truly live?" This is something I have been asking myself, and she put it so perfectly. I hope you all get the chance to see her film. It is messy and funny and sad and beautiful all at once. Just like cancer. Just like life.
Tons of love to everyone :) I hope you had a relaxing labor day!
Lauren
I suppose I should update on the big events of this past week. First I must say that I had an amazing weekend. I have a new job at the library at my law school working 3 days a week for a total of 15 hours. I am SO happy to be working again!! I basically get paid to do my homework, and it is very peaceful. Working there has provided me with some much-needed quiet time to think and study. It's great :) Classes have also been going extremely well.
In addition to working this weekend, my parents, Dan and I finally made it down to Middletown to see Uncle John and Aunt Kara and their adorable bulldogs. We went for a ride on their new boat on the Bohemia river. It was an absolutely perfect day out on the water. We had some snacks and drinks and enjoyed the breeze and the sunshine. It was so much fun! Then we headed back to their house for a delicious dinner of home-made ceasar salad and pasta with shrimp. It was sooooo good. Words cannot do that meal justice. haha It was a wonderful evening all around.
Today Dan and I went to a labor day picnic at the residence of the oblates of St. Francis DeSales, who run Salesianum High School and Nativity Prep, where Dan will be teaching starting tomorrow. We had such a good time. They grilled burgers and hotdogs and we sat and enjoyed mojitos in the shade of their garden. Quite a nice way to spend the holiday. We also stopped by Dan's family's house for some key lime pie and then headed back to Dan's new place to watch Lost. The Bobbitt's lent me the first season on DVD, and Dan and I have both become addicted!
Anyway, on to serious matters. The time has finally come for me to make up my mind about whether or not to have the stem cell transplant.
This past week I had my CT scan, PET scan, and my meeting with Dr. G to review their results. It was a little bit hectic trying to work my visits to the hospital around my law school classes, but thankfully everything worked out. I had the CT scan immediately after class on Monday, which of course meant a delicious lunch of barium sulfate for me. haha I can't wait to never have to drink that nasty stuff again.
My PET scan was scheduled bright and early at 6:30am on Tuesday. That procedure takes about 2 hours: 1 hour for the radioactive fluid to be given to me by IV, another 30 minutes for the actual scan, plus the time it takes to do all the prep inbetween. They bundled me in blankets and then strapped me down with velcro and pads molded to hold my head and legs in place in order to keep me as still as possible. The PET scan machine is like a doughnut, similar to a CT scan, but longer and more narrow. My arms actually grazed the sides and I could feel my breath bouncing off the ceiling above me. I'm glad I was able to zone out. The PET scan gives my doctor the ability to specifically detect cancerous areas in my body. It shows a blurry image of my body, and anything cancerous shows up as a shadow. It's very new technology and pretty amazing. After the scan was over, I rushed home and grabbed some breakfast, and then headed to school.
On Thursday I met with Dr. G after school to hear the results of my scans and discuss where to go from there. Mom, Dad and Dan all came along to support me :) Thankfully the news was all good. My scans appear to be clear, except for one slight "area of concern" on the PET scan. Dr. G said that he would call it a clear scan, but it is likely that microscopic cancer cells probably still exist inside my chest since the original mass was so big. After 5 rounds of chemo, a bit more treatment is necessary before I can call myself cancer-free, but that is to be expected since I was stage 3.
The CT scan showed that the small mass in the center of my chest shrank ever so slightly since my last CT scan, and still appears to be only scar tissue. Hooray! So although I'm not out of the woods entirely, this is most certainly the best possible news I could hope for at this stage. I was so happy!
Then it was time to talk business...
From here on out, the real test begins. We don't want just shrinkage, we want a complete cure. How to achieve that is really a guessing game now. Doctors don't have enough conclusive evidence to show that stem cell transplants increase survival rates, but I am part of a clinical trial that is investigating this possibility. If I stay on the trial, I have a 50/50 chance of being selected for a transplant, but it comes with a price. There are many risks, as I have explained previously. The biggest of these being permanent heart damage and total loss of fertility.
Dr. G did his best to give me the most unbiased answers to all of my questions, but I sensed that he felt it would be best for me to procede with another 3 rounds of standard R-CHOP chemo. We asked TONS of questions, but in the end there really are no right answers. So much about the treatment of cancer remains a mystery. My dad asked "what would you do if this were your daughter?" and Dr. G would not say. No one knows yet if stem cell transplants really provide any significant benefit, and it would be wrong for him to influence my decision without this knowledge. But in the end, knowing all the risks and costs involved and the fact that there is no conclusive proof of benefits at this time, I am opting to not have the transplant.
While I have sp0ken with several people who said that having the transplant was the best decision they could have made, I also know that Jason Schiable (the Loyola student who recently passed away from Hodgkins) had the transplant and still wasn't cured. So who really knows if it makes a difference or not. I would love to help science find an answer to that question, but as Dan pointed out, there are people who have had more time on this earth and are better qualified to participate in that experiment than I.
As it stands, Dr. G thinks I have about a 40% chance of relapsing based on the fact that my cancer was so far along to begin with. He explained that most patients who relapse are not successfully cured by second round treatment....which is scary to think about. If the day comes when I do relapse (and I pray it never does!), I will receive a different coctail of drugs and then a stem cell transplant. These procedures are pretty much last resorts, and most cancers that don't respond to R-CHOP are too aggressive to respond to these treatments either.
::sigh::
So it was a bittersweet day. I left feeling reassured and also scared. A body can only take so much poison, and once my chemo is done, I have to hope my cells are healthy enough to keep the cancer away on their own. Tomorrow I will call Dr. G and give him my decision to remove myself from the clinical trial and procede with standard treatment. I pray that I have made the right choice. I know that whatever is meant to happen will happen. I truly believe God has a plan.
I am doing my best not to think about all of this, and just allow myself to be guided down whatever path I'm meant to travel. I am SO thankful that I have had and continue to have so many happy, healthy days. Most cancer patients are not so fortunate. Let's hope that it is nothing but downhill smooth sailing from here on out.
I should say though, that having considered the possibility of death, I am scared and yet not scared. I know this is not the happiest subject, but it's something I have to think about, and thinking about it has made me come to a somewhat comforting realization. We're all going to die, and some people will die without any warning. I am really thankful that this darn disease has given me a kick in the pants to truly enjoy life while I can. You just never know. We are all in the same boat. We never know when our time in this life will come to an end, so we might as well treat each day as the gift that it is.
On that note, I watched an amazing documentary on TLC this past week called "Crazy, Sexy Cancer." If you missed it, I highly suggest buying the book or writing to TLC and asking them to air it again. It was AMAZING!! A young woman named Kris Carr, who also has a blog (http://www.crazysexycancer.blogspot.com/), filmed her search for healing after being diagnosed with a very rare and uncurable slow-growing cancer. She is in her early 30s and was pursuing her acting career in New York when she was diagnosed. She is a true inspiration, and I guarantee you will fall in love with her after seeing the film. She just has such an amazing spirit, and she meets several other women during the course of the film who are also battling cancer and teach her a lot about perseverence and finding happiness. It is just amazing to see Kris transform as she examines all the ways that cancer has cursed and yet simultaneously blessed her life. I kept thinking "that's exactly how I feel!! that's what I am going through!" the whole time I was watching it. It is an amazing look at how cancer helped Kris find herself, find love, and find her own "cure."
During the documentary, Kris asks the question "Why, when we are challenged to survive, do we give ourselves permission to truly live?" This is something I have been asking myself, and she put it so perfectly. I hope you all get the chance to see her film. It is messy and funny and sad and beautiful all at once. Just like cancer. Just like life.
Tons of love to everyone :) I hope you had a relaxing labor day!
Lauren
Sunday, August 19, 2007
so long summer
Well, the summer has ended, and what a summer it was! I have been quite busy these past few weeks with law school starting up and also went on my trip to Gettysburg with Dan, but I will attempt to summarize everything.
I enjoyed the Guster concert earlier this month. I believe my previous entry ended with me heading out to that. My friends and I got there several hours early so that we could be the first ones in, and managed to secure spots right along the railing by the stage, front and center. It was a standing outdoor venue, so I was pretty excited that we got arguably the best view one could ask for for the concert. Despite some thunder storms, we stayed for the entire event. We got completely soaked, but we had a FANTASTIC time!
I also got to go see Dan in his camp show, which was a lot of fun. Each year Bournelyf (the camp for special needs youth where Dan is a counselor) puts on a show as the grand finale to their summer sessions. This year's theme was Disney, and the kids put on some really cute and very clever skits. This was my third year seeing Dan in the show, and he was great as usual. The highlight of the evening though was a surprise marriage proposal for the host of the show, Stacy. This year's show marked her 20th anniversary working at the camp. After a special tribute to her where 19 former campers and counselors each brought her a rose on stage, her boyfriend came from the back of the audience dressed as a knight with the 20th rose, dropped down on one knee, and asked for her hand in marriage. After that there wasn't a dry eye in the house! It was such a fun evening, and I got to meet lots of Dan's campers, who all worship him and are adorable. Quite a good time indeed.
August 6-8th, Dan took me on my birthday trip to Gettysburg. We stayed at a beautiful bed and breakfast called Hickory Bridge Farm (you can check it out at http://www.hickorybridgefarm.com/), which was located about 10 minutes outside of Gettysburg. We had our own private bedroom, bathroom, and sitting room, cable TV, air conditioning, a shower, and a huge whirlpool tub. It was gorgeous! The family that owns the farm served us delicious breakfast each morning along with the other guests. We had french toast, eggs, fresh local peaches, bacon, croissants, and more. We got to chat with people visiting from Chicago, Florida, and New Jersey. Our bedroom had a guest book, and everyone before us had written that it was the best bed and breakfast they had ever been to. My favorite part was the farm's cat, Sam, who followed me around and was waiting on the porch by our door whenever we came back from town. I think we made a great choice for our first B&B experience :)
I really enjoyed exploring the town of Gettysburg too. Dan and I took an auto tour of the battlefield with a cd that our B&B owner let us borrow, and also went on a guided tour of the National Cemetery with a park ranger who was very knowledgeable. My favorite part of the trip was the ghost tour that we took on our first night, where we got to hear lots of local ghost stories. Some say Gettysburg is the most haunted place in the U.S.! It was very spooky.
We also ate at some great local restaurants, including one that was down in the spring house of one of Gettysburg's historic homes. It was candle-lit and all the staff were dressed in period costume. On our second night we went to a local German restaurant where I tried German food for the first time and actually really liked it (to my surprise). Dan is a big fan of all things German, so I can thank him for encouraging me to try something new :) And of course I learned a lot about the Civil War and about the importance of the battle of Gettysburg. Overall, it was a great trip!
Unfortunately for me, the hot weather and hiking that I did in Gettysburg was hard on my health, and I was sick for a few days after we got back. With some medicine and rest I was back on my feet after a few days though. No worries.
This past week I started school at Widener School of Law here in Wilmington, my dad's alma matter. Aaah!! I just can't believe summer is over and that I'm a law student already. This past week was packed with orientation activities and classes, and I had my 5th round of chemo on Tuesday to boot. It was pretty exhausting, but I am really enjoying school so far. We already had our first exam on Friday, which was intimidating, but I think I did well. We shall see. I have been enjoying making new friends, and I am already learning how to speak/think like a lawyer. haha
The school has been great in terms of accommodating me with my treatment. They taped the classes that I missed on Tuesday so I was able to keep up with everything. My 5th round of chemo went well, and I am now scheduled to have a PET scan, CT scan, and chest x-ray next week to give Dr. G a detailed picture of what's going on with my cancer. As it stands, it appears that the tumor is gone. All that remains is a small mass in the center of my chest, which seems to be scar tissue based on the fact that it didn't change since my last x-ray and isn't shaped like a mass of lymph nodes. After I get these scans, it will be time to make the final decision on whether or not I should receive a stem cell transplant, but it sounds as if we are leaning toward a "no" on that. My doctor said that as it stands, my chances for relapse are about 30%, but the risks involved in getting a stem cell transplant may outweigh the risk of relapse at this point.
Aside from all of that, I have been going to the YMCA to work out 3 times a week. It has been great having my dad as a workout buddy. He keeps me motivated. I have been swimming, strength training, and running for 30 minutes each time I go. I really want to get my body in the best shape possible so that if I ever have to deal with this cancer business again, I will be ready. So that's been a great source of physical and mental well-being for me.
Anyway, I really need to get some sleep. I have classes all day tomorrow. One final note: Please keep the family of Jason Schaible in your prayers. Jason was a Loyola student in the class below mine, and he just passed away this month after a year-long battle with Hodgkins Lymphoma. Though I didn't know Jason personally, I know many people who did know him, and I was really affected by his story. It absolutely terrifies me to see how this disease continues affecting more and more people around me, and increasingly younger people too. I cried for a long time last night looking at pictures of Jason and his parents, his younger sister, and his girlfriend. He looks so happy and healthy, even throughout his treatment. It is impossible to understand why people like Jason are taken from this world. I can't even begin to fathom what the Schaible family is going through right now. Please pray for peace for them and for all of Jason's loved ones.
Every day is so precious. Love and hugs to everyone,
Lauren
I enjoyed the Guster concert earlier this month. I believe my previous entry ended with me heading out to that. My friends and I got there several hours early so that we could be the first ones in, and managed to secure spots right along the railing by the stage, front and center. It was a standing outdoor venue, so I was pretty excited that we got arguably the best view one could ask for for the concert. Despite some thunder storms, we stayed for the entire event. We got completely soaked, but we had a FANTASTIC time!
I also got to go see Dan in his camp show, which was a lot of fun. Each year Bournelyf (the camp for special needs youth where Dan is a counselor) puts on a show as the grand finale to their summer sessions. This year's theme was Disney, and the kids put on some really cute and very clever skits. This was my third year seeing Dan in the show, and he was great as usual. The highlight of the evening though was a surprise marriage proposal for the host of the show, Stacy. This year's show marked her 20th anniversary working at the camp. After a special tribute to her where 19 former campers and counselors each brought her a rose on stage, her boyfriend came from the back of the audience dressed as a knight with the 20th rose, dropped down on one knee, and asked for her hand in marriage. After that there wasn't a dry eye in the house! It was such a fun evening, and I got to meet lots of Dan's campers, who all worship him and are adorable. Quite a good time indeed.
August 6-8th, Dan took me on my birthday trip to Gettysburg. We stayed at a beautiful bed and breakfast called Hickory Bridge Farm (you can check it out at http://www.hickorybridgefarm.com/), which was located about 10 minutes outside of Gettysburg. We had our own private bedroom, bathroom, and sitting room, cable TV, air conditioning, a shower, and a huge whirlpool tub. It was gorgeous! The family that owns the farm served us delicious breakfast each morning along with the other guests. We had french toast, eggs, fresh local peaches, bacon, croissants, and more. We got to chat with people visiting from Chicago, Florida, and New Jersey. Our bedroom had a guest book, and everyone before us had written that it was the best bed and breakfast they had ever been to. My favorite part was the farm's cat, Sam, who followed me around and was waiting on the porch by our door whenever we came back from town. I think we made a great choice for our first B&B experience :)
I really enjoyed exploring the town of Gettysburg too. Dan and I took an auto tour of the battlefield with a cd that our B&B owner let us borrow, and also went on a guided tour of the National Cemetery with a park ranger who was very knowledgeable. My favorite part of the trip was the ghost tour that we took on our first night, where we got to hear lots of local ghost stories. Some say Gettysburg is the most haunted place in the U.S.! It was very spooky.
We also ate at some great local restaurants, including one that was down in the spring house of one of Gettysburg's historic homes. It was candle-lit and all the staff were dressed in period costume. On our second night we went to a local German restaurant where I tried German food for the first time and actually really liked it (to my surprise). Dan is a big fan of all things German, so I can thank him for encouraging me to try something new :) And of course I learned a lot about the Civil War and about the importance of the battle of Gettysburg. Overall, it was a great trip!
Unfortunately for me, the hot weather and hiking that I did in Gettysburg was hard on my health, and I was sick for a few days after we got back. With some medicine and rest I was back on my feet after a few days though. No worries.
This past week I started school at Widener School of Law here in Wilmington, my dad's alma matter. Aaah!! I just can't believe summer is over and that I'm a law student already. This past week was packed with orientation activities and classes, and I had my 5th round of chemo on Tuesday to boot. It was pretty exhausting, but I am really enjoying school so far. We already had our first exam on Friday, which was intimidating, but I think I did well. We shall see. I have been enjoying making new friends, and I am already learning how to speak/think like a lawyer. haha
The school has been great in terms of accommodating me with my treatment. They taped the classes that I missed on Tuesday so I was able to keep up with everything. My 5th round of chemo went well, and I am now scheduled to have a PET scan, CT scan, and chest x-ray next week to give Dr. G a detailed picture of what's going on with my cancer. As it stands, it appears that the tumor is gone. All that remains is a small mass in the center of my chest, which seems to be scar tissue based on the fact that it didn't change since my last x-ray and isn't shaped like a mass of lymph nodes. After I get these scans, it will be time to make the final decision on whether or not I should receive a stem cell transplant, but it sounds as if we are leaning toward a "no" on that. My doctor said that as it stands, my chances for relapse are about 30%, but the risks involved in getting a stem cell transplant may outweigh the risk of relapse at this point.
Aside from all of that, I have been going to the YMCA to work out 3 times a week. It has been great having my dad as a workout buddy. He keeps me motivated. I have been swimming, strength training, and running for 30 minutes each time I go. I really want to get my body in the best shape possible so that if I ever have to deal with this cancer business again, I will be ready. So that's been a great source of physical and mental well-being for me.
Anyway, I really need to get some sleep. I have classes all day tomorrow. One final note: Please keep the family of Jason Schaible in your prayers. Jason was a Loyola student in the class below mine, and he just passed away this month after a year-long battle with Hodgkins Lymphoma. Though I didn't know Jason personally, I know many people who did know him, and I was really affected by his story. It absolutely terrifies me to see how this disease continues affecting more and more people around me, and increasingly younger people too. I cried for a long time last night looking at pictures of Jason and his parents, his younger sister, and his girlfriend. He looks so happy and healthy, even throughout his treatment. It is impossible to understand why people like Jason are taken from this world. I can't even begin to fathom what the Schaible family is going through right now. Please pray for peace for them and for all of Jason's loved ones.
Every day is so precious. Love and hugs to everyone,
Lauren
Friday, July 27, 2007
busy bee
Hello there :)
So as you can see, my entries have been pretty sparse as of late. I am amazed at how busy my summer has been despite the fact that I'm not working. It gets a little exhausting at times, especially since I'm just not feeling as mentally sharp as I used to, but I am enjoying myself.
My 22nd birthday was last Saturday and I had a very eventful weekend of celebration. Friday night my family, Dan and I went out to my favorite restaurant, La Toltecca, for birthday dinner. Then we came back to my house for cake. Normally I ask for hot milk sponge cake, but this year I decided to do something different and just asked for a plain vanilla cake with vanilla ice cream. Not the most unique choice, but it was deeeelicious. Mom put some red food coloring into the homemade icing and decorated the cake with pink drizzles. Yum yum :)
On Saturday, Dan took me out to brunch. That was an interesting experience. Everyone always asks me if my wig has ever fallen off on its own out in public. Up until my birthday, it never had. haha! We were seated outside and the sun was pretty bright, so Dan got up to adjust the umbrella above our table. When he went to sit back down he accidentally bumped my head and sent the wig flying. Needless to say I got some pretty strange looks from the people seated next to us. Dan quickly scooped up the wig and I put it back on. I was cracking up. I know Dan felt bad, but it really wasn't a big deal.
I was pretty exhausted when we got back from brunch, so I napped for a few hours before hitting the road to see my roommates up in New Jersey for Annette's graduation party. I got up there kind of late, but thankfully the party was still in full swing. Annette's family is so much fun! They had a birthday cake for me in addition to Annette's graduation cake :) We went swimming in their pool in the back yard, played with Annette's adorable Bichon Frises, and ate tons of food. The next day we all went out to breakfast at a diner (how very Jersey of us). All the waiters had the exact same weird spiked hairdo...perhaps some sort of north Jersey trend? I got pancakes, which were delicious. We all went back to Annette's house where she presented us with our graduation gifts: framed pictures of the 5 of us roommates. One picture was from the first month of senior year and the other picture was from graduation day. I love them!! After saying goodbyes to my friends and Annette's family, I headed back to Delaware.
That night Dan's family invited me over for some corn on the cob (arguably my favorite summer meal) and burgers. They decorated my chair at the table with birthday balloons and gave me a gift card to Accent Music! I am heading over there today to pick out some new sheet music for my piano. Dan also got me a brand new book of Classical Favorites for the piano. I am working on learning Moonlight Sonata and Chopin's Raindrop. Raindrop is Dan's favorite piece and I have always wanted to learn Moonlight Sonata. I am enjoying having my new piano so much :) I haven't been able to play in years since my old one sort of died, and now I'm finally getting back into it. It's been very therapeutic for me. I just wish I had more time to sit and really work on the new pieces I have.
On Tuesday I had round 4 of chemo. Yeesh. What a long day that was. I got to the hospital at 9am and didn't leave until 6pm. I had a CT scan in the morning followed by a chest x-ray, then my meeting with Dr. G, and finally 4 hours of chemo. Everything went smoothly, aside from a few computer system glitches thanks to the darn apostrophe in my last name. They can never seem to find me in the system no matter how many times I register for things. Oh well.
The CT scan was fine, but the nurse forgot to tell me when it was OK to breathe, so I was laying there holding my breath for a really long time before I finally gave up and just started breathing normally. haha. Probably my least favorite part of the day was having to drink all of that yucky barium sulfate. They gave me a berry flavored jug of it first and then a citrus one, but neither really hid the grossness of the barium well enough. I was gagging them down. Ugh. I have to get another CT scan next time, and I'm really not looking forward to more barium. It's not even appealing to look at. It's white and chalky and awful. But if I chug it quickly, it's not too bad.
My appointment with Dr. G went well. I am continuing to gain weight, despite my best efforts. I really hate that aspect of this treatment. No matter how well I try to eat or how much I try to exercise, I seem to be ballooning up like a tick! I have gained about 15 pounds since the start of my treatment, which is pretty depressing for a 22-year-old girl who is also bald. haha But I guess gaining too much is better than losing too much. Dr. G said my weight gain is a side effect of the steroids that I'm on, and my weight should return to normal once I'm done treatment. That could take a while though because steroids can remain in the body for up to a year. Good grief.
Reviewing my CT scan, I was finally able to see a detailed image of the progress of my tumor since my first scan back in May. I have lost all but a small mass that remains in the center of my chest. Based on its appearance, Dr. G believes it is likely to be only scar tissue, but we can't be sure until my next appointment when I will get at PET scan. The PET scan will show us if there are any cancerous cells remaining in my body. If there are, I will probably be headed for the stem cell transplant.
With regard to the transplant, I had a very interesting phone conversation with a girl named Amy who is from Kentucky and was matched with me through the Leukemia & Lymphoma Society. Amy was 25 when she was diagnosed with diffuse large B-cell NHL, and has now been in remission for 2 years after receiving chemo and a stem cell transplant. We were shocked to discover that there were many bizarre similarities between us. Both of us had tumors that covered our chest cavity and crushed our left lungs. Her lung had completely collapsed, while mine was about 3/4 collapsed. She was stage 4 though because cancerous fluid had already leaked into her lung. Mine thankfully had not.
Amy explained that she opted to do the stem cell transplant because her doctors said it would up her chances of being totally cured from about 50-60% to 80%. Based on how far along her cancer was at diagnosis, she was at high risk for relapsing and was thus a good candidate for a stem cell transplant. I am sort of in the same boat. Getting a transplant would clean my body out of all my old white blood cells and replace them with young healthy stem cells, but it comes at a hefty price. There is a mortality risk of 3%-30% depending on whether you receive your own cells or donor cells. I would be receiving my own, so the risk is lessened. The bigger problem is that after receiving the high doses of chemo involved with the transplant, it is unlikely that I would ever be able to have my own children....::sigh:: That always seems to be the way with this treatment. It's a constant weighing of risks and choosing the lesser of two evils.
For Amy, getting the transplant appears to have been the best course of action. She was hospitalized for 3 weeks and was out of commission for about a month after she returned home, but she has been cancer-free since. She told me to plan on taking about 2 months out of my life if I decide to go ahead with it, which would mean I would have to defer law school until next year. The school does not allow first year students to start in the spring, so I would lose an entire year of courses. I won't know if I am going to go to law school or have to get the transplant until my next chemo appointment, which falls just a few days before my first day of orientation at Widener. So as of now, things are just hanging in the balance. I am hopeful that I will not need the transplant, but I am also worried about the possibility of relapsing and having to go through all of this again if I don't get it. Decisions decisions...
Since I don't know yet if I am going to get this transplant or not, I have been moving forward as though I will be attending school full-time in a few weeks. Dad and I have been contacting the Dean regularly to update her on the situation, and I have already received homework, readings to prepare, and my class schedule in the mail. If I start, I will be taking 4 courses for a total of 15 credits. I will have 2 classes a day every day except Wednesdays when I have 3 and weekends. Orientation is set to begin on August 14th. Aaaah!! Time is running out and there is so much I still want to do this summer.
Thankfully I was able to book my birthday trip with Dan to Gettysburg, PA. Dan is paying for us to spend 2 nights at a beautiful farmhouse bed and breakfast located 9 miles from Gettysburg near the foothills of the Appalachian Mountains. I spoke with the innkeeper on the phone yesterday and she sounded so nice! Our trip is scheduled for August 6-8, and we plan to explore the historic battlefields, go on a ghost tour, and maybe do some hiking or bike-riding while we're there (or perhaps even horse-back-riding?? we shall see). I can't wait!
Anyway, it's time for me to run to the post office and get some things done. I have been trying to get birthday thank-yous in the mail and working on presents for my roommates which I am finally sending out today. I made them mix CD's of all of our favorite songs from this year. I think they turned out pretty cute. Tonight I am going up to Philly with 3 of my friends to see my favorite band, Guster, in concert at Penn's Landing and go out to dinner at Dave & Buster's. It should be a great time.
Lots of love to everyone :)
Lauren
So as you can see, my entries have been pretty sparse as of late. I am amazed at how busy my summer has been despite the fact that I'm not working. It gets a little exhausting at times, especially since I'm just not feeling as mentally sharp as I used to, but I am enjoying myself.
My 22nd birthday was last Saturday and I had a very eventful weekend of celebration. Friday night my family, Dan and I went out to my favorite restaurant, La Toltecca, for birthday dinner. Then we came back to my house for cake. Normally I ask for hot milk sponge cake, but this year I decided to do something different and just asked for a plain vanilla cake with vanilla ice cream. Not the most unique choice, but it was deeeelicious. Mom put some red food coloring into the homemade icing and decorated the cake with pink drizzles. Yum yum :)
On Saturday, Dan took me out to brunch. That was an interesting experience. Everyone always asks me if my wig has ever fallen off on its own out in public. Up until my birthday, it never had. haha! We were seated outside and the sun was pretty bright, so Dan got up to adjust the umbrella above our table. When he went to sit back down he accidentally bumped my head and sent the wig flying. Needless to say I got some pretty strange looks from the people seated next to us. Dan quickly scooped up the wig and I put it back on. I was cracking up. I know Dan felt bad, but it really wasn't a big deal.
I was pretty exhausted when we got back from brunch, so I napped for a few hours before hitting the road to see my roommates up in New Jersey for Annette's graduation party. I got up there kind of late, but thankfully the party was still in full swing. Annette's family is so much fun! They had a birthday cake for me in addition to Annette's graduation cake :) We went swimming in their pool in the back yard, played with Annette's adorable Bichon Frises, and ate tons of food. The next day we all went out to breakfast at a diner (how very Jersey of us). All the waiters had the exact same weird spiked hairdo...perhaps some sort of north Jersey trend? I got pancakes, which were delicious. We all went back to Annette's house where she presented us with our graduation gifts: framed pictures of the 5 of us roommates. One picture was from the first month of senior year and the other picture was from graduation day. I love them!! After saying goodbyes to my friends and Annette's family, I headed back to Delaware.
That night Dan's family invited me over for some corn on the cob (arguably my favorite summer meal) and burgers. They decorated my chair at the table with birthday balloons and gave me a gift card to Accent Music! I am heading over there today to pick out some new sheet music for my piano. Dan also got me a brand new book of Classical Favorites for the piano. I am working on learning Moonlight Sonata and Chopin's Raindrop. Raindrop is Dan's favorite piece and I have always wanted to learn Moonlight Sonata. I am enjoying having my new piano so much :) I haven't been able to play in years since my old one sort of died, and now I'm finally getting back into it. It's been very therapeutic for me. I just wish I had more time to sit and really work on the new pieces I have.
On Tuesday I had round 4 of chemo. Yeesh. What a long day that was. I got to the hospital at 9am and didn't leave until 6pm. I had a CT scan in the morning followed by a chest x-ray, then my meeting with Dr. G, and finally 4 hours of chemo. Everything went smoothly, aside from a few computer system glitches thanks to the darn apostrophe in my last name. They can never seem to find me in the system no matter how many times I register for things. Oh well.
The CT scan was fine, but the nurse forgot to tell me when it was OK to breathe, so I was laying there holding my breath for a really long time before I finally gave up and just started breathing normally. haha. Probably my least favorite part of the day was having to drink all of that yucky barium sulfate. They gave me a berry flavored jug of it first and then a citrus one, but neither really hid the grossness of the barium well enough. I was gagging them down. Ugh. I have to get another CT scan next time, and I'm really not looking forward to more barium. It's not even appealing to look at. It's white and chalky and awful. But if I chug it quickly, it's not too bad.
My appointment with Dr. G went well. I am continuing to gain weight, despite my best efforts. I really hate that aspect of this treatment. No matter how well I try to eat or how much I try to exercise, I seem to be ballooning up like a tick! I have gained about 15 pounds since the start of my treatment, which is pretty depressing for a 22-year-old girl who is also bald. haha But I guess gaining too much is better than losing too much. Dr. G said my weight gain is a side effect of the steroids that I'm on, and my weight should return to normal once I'm done treatment. That could take a while though because steroids can remain in the body for up to a year. Good grief.
Reviewing my CT scan, I was finally able to see a detailed image of the progress of my tumor since my first scan back in May. I have lost all but a small mass that remains in the center of my chest. Based on its appearance, Dr. G believes it is likely to be only scar tissue, but we can't be sure until my next appointment when I will get at PET scan. The PET scan will show us if there are any cancerous cells remaining in my body. If there are, I will probably be headed for the stem cell transplant.
With regard to the transplant, I had a very interesting phone conversation with a girl named Amy who is from Kentucky and was matched with me through the Leukemia & Lymphoma Society. Amy was 25 when she was diagnosed with diffuse large B-cell NHL, and has now been in remission for 2 years after receiving chemo and a stem cell transplant. We were shocked to discover that there were many bizarre similarities between us. Both of us had tumors that covered our chest cavity and crushed our left lungs. Her lung had completely collapsed, while mine was about 3/4 collapsed. She was stage 4 though because cancerous fluid had already leaked into her lung. Mine thankfully had not.
Amy explained that she opted to do the stem cell transplant because her doctors said it would up her chances of being totally cured from about 50-60% to 80%. Based on how far along her cancer was at diagnosis, she was at high risk for relapsing and was thus a good candidate for a stem cell transplant. I am sort of in the same boat. Getting a transplant would clean my body out of all my old white blood cells and replace them with young healthy stem cells, but it comes at a hefty price. There is a mortality risk of 3%-30% depending on whether you receive your own cells or donor cells. I would be receiving my own, so the risk is lessened. The bigger problem is that after receiving the high doses of chemo involved with the transplant, it is unlikely that I would ever be able to have my own children....::sigh:: That always seems to be the way with this treatment. It's a constant weighing of risks and choosing the lesser of two evils.
For Amy, getting the transplant appears to have been the best course of action. She was hospitalized for 3 weeks and was out of commission for about a month after she returned home, but she has been cancer-free since. She told me to plan on taking about 2 months out of my life if I decide to go ahead with it, which would mean I would have to defer law school until next year. The school does not allow first year students to start in the spring, so I would lose an entire year of courses. I won't know if I am going to go to law school or have to get the transplant until my next chemo appointment, which falls just a few days before my first day of orientation at Widener. So as of now, things are just hanging in the balance. I am hopeful that I will not need the transplant, but I am also worried about the possibility of relapsing and having to go through all of this again if I don't get it. Decisions decisions...
Since I don't know yet if I am going to get this transplant or not, I have been moving forward as though I will be attending school full-time in a few weeks. Dad and I have been contacting the Dean regularly to update her on the situation, and I have already received homework, readings to prepare, and my class schedule in the mail. If I start, I will be taking 4 courses for a total of 15 credits. I will have 2 classes a day every day except Wednesdays when I have 3 and weekends. Orientation is set to begin on August 14th. Aaaah!! Time is running out and there is so much I still want to do this summer.
Thankfully I was able to book my birthday trip with Dan to Gettysburg, PA. Dan is paying for us to spend 2 nights at a beautiful farmhouse bed and breakfast located 9 miles from Gettysburg near the foothills of the Appalachian Mountains. I spoke with the innkeeper on the phone yesterday and she sounded so nice! Our trip is scheduled for August 6-8, and we plan to explore the historic battlefields, go on a ghost tour, and maybe do some hiking or bike-riding while we're there (or perhaps even horse-back-riding?? we shall see). I can't wait!
Anyway, it's time for me to run to the post office and get some things done. I have been trying to get birthday thank-yous in the mail and working on presents for my roommates which I am finally sending out today. I made them mix CD's of all of our favorite songs from this year. I think they turned out pretty cute. Tonight I am going up to Philly with 3 of my friends to see my favorite band, Guster, in concert at Penn's Landing and go out to dinner at Dave & Buster's. It should be a great time.
Lots of love to everyone :)
Lauren
Monday, July 16, 2007
overdue update
aaah I can't believe I let 10 days go by without an update! That's pretty bad. I suppose it's a good thing though, because it means I've been busy having fun and staying active.
I can't remember exactly what order I did any of these things in, so I'm just going to kind of randomly summarize the past week and a half.
I ended up getting to see fireworks at Dan's house on the Friday after the 4th of July. In keeping with tradition, the Mahler men set off a series of small explosives in the driveway while Kathleen, Mrs. Mahler and I watched. It was a lot of fun. After visiting with Dan for a bit, I headed down to Trolley Square for a drink with my friends at Catherine Rooney's pub. We had a nice time and I saw a ton of people I knew from high school and grade school. That's Delaware for you!
On Saturday, Dan and I went up to West Chester for Dan Farrell's graduation party. Farrell was Dan's roommate for nearly all 4 years when he was at Millersville. His family has a beautiful home with a pool and hot tub that sits on a fairly big plot of land, so we enjoyed a night of swimming, football, tons of food, and good times chatting with Dan's friends from MU. It was great seeing all of them again.
Monday night I went out to dinner at Kelly's Logan House with Meggie and Caitlyn, who I haven't seen since high school. We had such a good time! Caitlyn was one of my best friends back in the day when I attended IHM, and I think we picked up right where we left off. Hopefully I'll see her again soon. I think I've said this already, but I really am grateful for the way being sick has sort of helped me reconnect with friends I've lost touch with over the years. I suppose cancer is the kick in the pants that I needed to pick up the phone and see how my old friends are doing.
Tuesday I hung out with Dan. We saw Transformers, which was pretty good for an action movie. I thought the romance part was a little cheesy though. We went to Friendly's after the movie and got ice cream and dinner.
Wednesday Amy came over and we went out to lunch with Keen. I took them to Bon Appetite since I enjoyed it so much when Jenny took me there a few weeks ago. We had a nice lunch and chatted about our years growing up in Deerhurst where Amy was our neighbor across the street. I can't believe how long ago that was. It makes me feel very old seeing how much all of the neighborhood kids have grown up!
Thursday I drove down to Baltimore to see Kelli, Janine, Lindsay and Susan. Kelli Larson was my boss at the Alcohol and Drug Education office at Loyola. She was also the adviser to the Alcohol and Drug Education Team, which Janine, Susan and I were student coordinators for. We had a deliiicious dinner at a Cuban restaurant called Little Havana. It was right on the harbor in Federal Hill, and our table was outside overlooking the water! I got crab quesadillas (and Susan did too...we always have the same taste! haha). We had such a good time catching up. Kelli made me cupcakes for my birthday (which is this Saturday) and brought me a bag of my favorite candies. Yum! Kelli has been a great friend and mentor to us, and is someone that I truly admire. She is due to have her first baby in September, so I was really excited to see her and hear all about her progress. I can't wait to meet baby Larson in the fall when he or she arrives :)
After dinner I drove down to Annapolis where Susan lives and spent the night at her house. I got to meet her adorable golden retrievers, Josh and Ben. I think I definitely want to have a dog some day...and a cat...and a horse...haha. But anyway, it was fun getting to visit her home and I slept like a baby!
The next day I drove to Fenwick beach in lower Delaware to see Meggie and Kristen at Meggie's family's beach house. The house sits right on an inlet and we all sat out on the porch and had margaritas and a delicious taco casserole dinner that I loved (I am a huge fan of anything Mexican). After dinner, Meggie's boyfriend Joe arrived and we drove down to Ocean City, MD (which is about 10 minutes away) to go to a beach club/bar/restaurant called Seacrets. This place was nuts! I can't imagine how much money this business makes in one night, because it's absolutely humongous. Seacrets sits right on the beach and has many different sections within it. There is a beach club, a night club, an ocean bar that sits right in the water and has inner tubes and tables where you can be served drinks, a dock where boats can come and get dinner and drinks, a beach restaurant, tons of different bars all made to look like beach huts, two stages featuring different live bands, rooms with different DJ's playing everything from 80s to techno to hiphop to reggae, and tons of food stands selling pizza, funnel cake, etc. Needless to say we had a GREAT time there. I was DD, so I only had one drink, but it was delicious! I tried the "Pain in de Ass", the club's signature drink. It was a pina colada/rum runner swirled together. I also ordered fries and we sat out on the beach restaurant surrounded by palm trees and tons of tiki torches. It felt like we were in the Caribbean! We all had a great time dancing too.
After spending the night at Meggie's, we spent the day laying out on the beach. It was perfect weather and the water was nice and warm. At dinner time we headed up to the Rehobeth boardwalk for some pizza and ice cream. I drove home that night and went over to the Levine's where Dan was dog-sitting. They have a golden retriever named Scout. He was so cute! He climbed right in my lap on the couch and watched tv with us. haha
Dan came over last night for dinner and we went to Rita's for water ice and then watched Big Brother with my parents. They are obsessed with that show. I think it's pretty ridiculous.
Anyway, that's what has been going on with me. Aside from being sick, I'm having a great summer. I am doing my best to use my time wisely and enjoy this work-free summer as much as possible. I've been feeling great and exercising a lot to try to take off some of the weight I've gained from the Prednisone. Dr. G said I'm allowed to exercise as long as I don't do anything crazy. I'm also trying to eat healthier, although I may not do too well this week with my birthday coming up on Saturday.
As for my treatment, my 4th round of chemo is coming up on July 24th. There was an interesting article on the cover of the New York Times on Saturday about two revolutionary new drugs for treating lymphoma that are not being widely used because of marketing issues. I want to talk to Dr. G about them and find out what he thinks. These drugs were able to cure late-stage Non-Hodgkins Lymphoma with only 1 hour of receiving the drug through IV. Isn't that amazing?!?! So far they are approved for treating indolent lymphomas (the slow growing type. mine is aggressive), but they are also being used to treat people who have failed the CHOP-R treatment (which is what I'm receiving now). In the years to come, they could be replacing CHOP-R as the preferred treatment for all types of lymphoma, but first they need more evidence to prove that these drugs increase survival rates in patients. Recent studies only suggest that they are better. This is definitely something that I want to learn more about...
Time for me to go do my aerobics routine. That's a pretty good sign if my lungs are working well enough for me to do cardio workouts, eh? I am very pleased :)
I hope everyone is feeling as great as I am!
Lauren
I can't remember exactly what order I did any of these things in, so I'm just going to kind of randomly summarize the past week and a half.
I ended up getting to see fireworks at Dan's house on the Friday after the 4th of July. In keeping with tradition, the Mahler men set off a series of small explosives in the driveway while Kathleen, Mrs. Mahler and I watched. It was a lot of fun. After visiting with Dan for a bit, I headed down to Trolley Square for a drink with my friends at Catherine Rooney's pub. We had a nice time and I saw a ton of people I knew from high school and grade school. That's Delaware for you!
On Saturday, Dan and I went up to West Chester for Dan Farrell's graduation party. Farrell was Dan's roommate for nearly all 4 years when he was at Millersville. His family has a beautiful home with a pool and hot tub that sits on a fairly big plot of land, so we enjoyed a night of swimming, football, tons of food, and good times chatting with Dan's friends from MU. It was great seeing all of them again.
Monday night I went out to dinner at Kelly's Logan House with Meggie and Caitlyn, who I haven't seen since high school. We had such a good time! Caitlyn was one of my best friends back in the day when I attended IHM, and I think we picked up right where we left off. Hopefully I'll see her again soon. I think I've said this already, but I really am grateful for the way being sick has sort of helped me reconnect with friends I've lost touch with over the years. I suppose cancer is the kick in the pants that I needed to pick up the phone and see how my old friends are doing.
Tuesday I hung out with Dan. We saw Transformers, which was pretty good for an action movie. I thought the romance part was a little cheesy though. We went to Friendly's after the movie and got ice cream and dinner.
Wednesday Amy came over and we went out to lunch with Keen. I took them to Bon Appetite since I enjoyed it so much when Jenny took me there a few weeks ago. We had a nice lunch and chatted about our years growing up in Deerhurst where Amy was our neighbor across the street. I can't believe how long ago that was. It makes me feel very old seeing how much all of the neighborhood kids have grown up!
Thursday I drove down to Baltimore to see Kelli, Janine, Lindsay and Susan. Kelli Larson was my boss at the Alcohol and Drug Education office at Loyola. She was also the adviser to the Alcohol and Drug Education Team, which Janine, Susan and I were student coordinators for. We had a deliiicious dinner at a Cuban restaurant called Little Havana. It was right on the harbor in Federal Hill, and our table was outside overlooking the water! I got crab quesadillas (and Susan did too...we always have the same taste! haha). We had such a good time catching up. Kelli made me cupcakes for my birthday (which is this Saturday) and brought me a bag of my favorite candies. Yum! Kelli has been a great friend and mentor to us, and is someone that I truly admire. She is due to have her first baby in September, so I was really excited to see her and hear all about her progress. I can't wait to meet baby Larson in the fall when he or she arrives :)
After dinner I drove down to Annapolis where Susan lives and spent the night at her house. I got to meet her adorable golden retrievers, Josh and Ben. I think I definitely want to have a dog some day...and a cat...and a horse...haha. But anyway, it was fun getting to visit her home and I slept like a baby!
The next day I drove to Fenwick beach in lower Delaware to see Meggie and Kristen at Meggie's family's beach house. The house sits right on an inlet and we all sat out on the porch and had margaritas and a delicious taco casserole dinner that I loved (I am a huge fan of anything Mexican). After dinner, Meggie's boyfriend Joe arrived and we drove down to Ocean City, MD (which is about 10 minutes away) to go to a beach club/bar/restaurant called Seacrets. This place was nuts! I can't imagine how much money this business makes in one night, because it's absolutely humongous. Seacrets sits right on the beach and has many different sections within it. There is a beach club, a night club, an ocean bar that sits right in the water and has inner tubes and tables where you can be served drinks, a dock where boats can come and get dinner and drinks, a beach restaurant, tons of different bars all made to look like beach huts, two stages featuring different live bands, rooms with different DJ's playing everything from 80s to techno to hiphop to reggae, and tons of food stands selling pizza, funnel cake, etc. Needless to say we had a GREAT time there. I was DD, so I only had one drink, but it was delicious! I tried the "Pain in de Ass", the club's signature drink. It was a pina colada/rum runner swirled together. I also ordered fries and we sat out on the beach restaurant surrounded by palm trees and tons of tiki torches. It felt like we were in the Caribbean! We all had a great time dancing too.
After spending the night at Meggie's, we spent the day laying out on the beach. It was perfect weather and the water was nice and warm. At dinner time we headed up to the Rehobeth boardwalk for some pizza and ice cream. I drove home that night and went over to the Levine's where Dan was dog-sitting. They have a golden retriever named Scout. He was so cute! He climbed right in my lap on the couch and watched tv with us. haha
Dan came over last night for dinner and we went to Rita's for water ice and then watched Big Brother with my parents. They are obsessed with that show. I think it's pretty ridiculous.
Anyway, that's what has been going on with me. Aside from being sick, I'm having a great summer. I am doing my best to use my time wisely and enjoy this work-free summer as much as possible. I've been feeling great and exercising a lot to try to take off some of the weight I've gained from the Prednisone. Dr. G said I'm allowed to exercise as long as I don't do anything crazy. I'm also trying to eat healthier, although I may not do too well this week with my birthday coming up on Saturday.
As for my treatment, my 4th round of chemo is coming up on July 24th. There was an interesting article on the cover of the New York Times on Saturday about two revolutionary new drugs for treating lymphoma that are not being widely used because of marketing issues. I want to talk to Dr. G about them and find out what he thinks. These drugs were able to cure late-stage Non-Hodgkins Lymphoma with only 1 hour of receiving the drug through IV. Isn't that amazing?!?! So far they are approved for treating indolent lymphomas (the slow growing type. mine is aggressive), but they are also being used to treat people who have failed the CHOP-R treatment (which is what I'm receiving now). In the years to come, they could be replacing CHOP-R as the preferred treatment for all types of lymphoma, but first they need more evidence to prove that these drugs increase survival rates in patients. Recent studies only suggest that they are better. This is definitely something that I want to learn more about...
Time for me to go do my aerobics routine. That's a pretty good sign if my lungs are working well enough for me to do cardio workouts, eh? I am very pleased :)
I hope everyone is feeling as great as I am!
Lauren
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