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

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