Saturday, September 22, 2007

Thank You - A Work In Progress (Updated 11/3/07)

There are so many people to thank that this part of the blog will be a work in progress, but I wanted to thank everyone publicly for all that they have done.

First I must thank my family for their love, strength and continued support throughout this whole ordeal! Stephen is a rock, Walker is a constant joy and distraction, my parents and my brother have jumped at each and every call for help, my in-laws have been a great source of support for Stephen as well as for me. My Aunt has been a great mediator and a positive source of energy (and my "keep on movin" painting, fruit, cards, and gifts for Walker...more recently a meal from Honey Baked ham and another toy for Walker)! For Katie and Abby who filled in the babysitting gaps and have become an important part of our lives with their positive influence on Walker (and Nyssa and Sylva)!

Dr. Cassity: There are no words for the gratitude felt for someone who has likely saved your life. Your willingness to go the extra mile and order a chest x-ray either saved my life or at the very least saved me from growing progressively worse. On my first day of cancer you told me that I would run the Peachtree next year...that ray of hope has kept me going...I can see now that it can actually be a reality. The 2008 t-shirt will be for you!

Mickey Montevideo: For agreeing early on to be my cancer recovery manager. Your dedication to emails, phone calls, and committee organization has really made it much easier for communicating with friends and family. Not only am I grateful, but many of my friends and family have expressed their gratitude as well. Thank you also for the many dinners, concert tickets, head shaving, LTN rally and fund raising, and hand holding! More recenlty for yet even more meals, fun distractions, girls night and continued friendship and support!

Paula Butler Kay: For ALWAYS being upbeat!!! For 25 years of steady friendship. For headwear, socks, blankets, babysitting. For multiple dinners (how did I not know that you could cook?). For being the team leader for the LTN walk and the fundraising. Thank you for executing the entire hair plan from the appt. at Siggers to wig shopping to the drive home. More recently for additional meals, babysitting, girls night and just continued calls with upbeat enthusiasm and distractions :)

Dana and Eric Heil: For letting Stephen interrupt your plans and babysitting Walker at one of the most critical nights of our lives. For the movies, dinner and friendship. For participating in LTN and surpassing your fund raising goal!!! More recently for bringing multiple dinner with delicious shrimp and a meal made just for Walker :) Also for your continued frienship and support on a regular basis!!!

Kim Black: For over 20 years of friendship. For multiple dinners. For weekly cards, calls and support. For fundraising for the LTN walk.

Dana and Greg Wilmoth: For friendship, the cool cancer care basket that had so many applicable, personally chosen items for the occasion. Thank you also for coming all the way to Athens to visit and share your new baby news... a bright spot for all of us!

Myles, Libby, Marlee, Ethan, Sean, Michele, Hannah, Emma: For friendship and a wonderful trip to the lake with special people!

Renee Milstead: For friendship, babysitting, LTN donation and attending the Look Good Feel Better event at the Loran Smith Cancer Center.

Mary Ann Hammond: For lasting friendship, agreeing to take on the dinner calendar, for a constant supply of Starbucks coffee :), the softest organic shirt I've ever owned, trucks for Walker, your famous veggie lasagna (I will get that recipe out of you one day), flowers and wine. Also for your continued optimism.

Ruth LeBlanc: For visits with friendship and coming all the way from Kennesaw for LTN and fund raising too!

Helene Schwartz: For attending my first biopsy and taking care of Stephen's meal at ARMC. For friendship, routine cards, holding my hand and Walker's at the visit to the Loran Smith Cancer Center, for a great lunch and visit at Allens Bar and Grill!

Deb Dietzler and Peter Anderson: For friendship, flowers, agreeing to be pet committee chair, homemade bread and that particularly special high protein snack box! More recently for a huge box of goodies including a meal (I have to give Peter some cred for the recipe) though it was well prepared by Deb ;) Special peanut butter, pimento cheese, peanut bars, dangerous chocolate candies, Halloween candle, doggie toy and a wonderful visit with great friends!

Dave Perkins: For being the best mentor and one of the smartest people I have ever known. Thank you for staying in my life and answering my crazy questions. For riding your bike a million miles to benefit the cause and raising over $50k dollars with my headshot pinned to your jersey!

Brooks Arnold: For your friendship, spectacular flowers, LTN donation and willingness to take such good care of my clients at a challenging time for business, continued calls and emails of support.

Sarah Freeman: For your friendship, a wonderful meal and beautiful tray, your LTN donation, cards, calls and emails of support!

Andrea LaFera: For your friendship, you were my first meal and it was a wonderful meal (with less than a week b4 your trip to Italy with a toddler...yikes!) Some of the best meatballs I have ever eaten!!!!

Phyllis Tucker: For hiring me at ExR and therefore bringing Stephen and Walker into my life. For your continued friendship and support over the years. For several wonderful meals and your mother's tasty (but dangerous) cookies, and of course, for the trucks for Walker!

Kathy Bangle: For your friendship, for sharing your faith and giving me strength at such a difficult time, for a fantastic meal and dessert, for your constant prayers for our family!

Callie Waller: For your friendship and your participation in the meal brought by Kathy. More recently....LOOK OUT 5 PTS have serious chicken salad competition! Thanks for a repeat that was truly comfort food :) Also for the fun visit catching up.

Amy Flurry: For your friendship, continued calls and emails of support, for a morning of champagne just to celebrate life (and The Dragon at WOW!), and a wonderful Italian meal!

Rhonda Peck, Sandra and Jim Smith: For your friendship and support, for a timely and delicious meal, for the role models of folks who have persevered through difficult times to remain some of the most positive people I have ever known!

Judy Adams: For friendship and an impressively prepared meal with pretty flowers!

DRee Krohn: For friendship, for agreeing to head up the childcare committee, for being patient with my reliance on email rather than phone calls :) More recently for a perfectly prepared steak dinner that Walker was able to enjoy with us, a beautiful salad, asparagus, and mushrooms with red DELICIOUS! It was also wonderful to visit and catch up with you :)

Jon Ramsey and Christine Bohlen: For friendship, this blog and continued prayers and support!

John and Chad Siggers: See Hair Today Gone Tomorrow blog entry...

Betty Butler: For prayers and support and very cute head coverings!

Tommie and Terry Kay: For prayers and support, for letting Walker crash the grandkid visit and for encouragement about my choice to stay in Athens by sharing your story about ARMC!

Katie Neal: For prayers and support, for loving and playing with Walker, for spectacular flowers with a cute baby jaguar for Walker!

Sallie Barker: For friendship and beautiful flowers!

Steve Hunt: For friendship and a very important supportive call to Stephen!

Mike and Bob Young: For prayers and support...for a prayer shawl that brought me a great result to the PET/CT!!!!

Susan Sims: For prayers, support, thank you notes and stamps.

Sue Lawrence: For friendship, continuous cards, calls and emails of support, a wonderful and delicious meal and your LTN donation.

Jessica Magnarella: For friendship and a willingness to make a meal that I had to cancel :)

Carolyn Elster: For sharing the cancer bond and for managing to provide a meal for us at a very difficult time for her family.

Pam Parker: For continued friendship and support even in her own difficult times, for cards and emails of support, and for the LTN donation.

Angela McDonough: For a long, special snail mail letter of friendship, for continued emails of support and for her LTN donation.

Don and Phyllis Nelson: For friendship, continued support through cards, calls and emails.

Please see the LTN blog for additional thank you for individual donations.

Joyce Waller for a wonderful meal and a hug that says it all! Thanks for thinking of us.

Caron Lynch for continued love and support, calls and cards!

David Frakt (KCII) for love and support and continued emails that brighten my day with pictures of KCIII, Max :)

Kyla Hastie for continued friendship and support and routine calls. A great camping trip with great friends!

Friday, September 21, 2007

Walker's Allergy Test

I realize this is off topic, but some of you were waiting to hear about Walker's allergy tests.

Unfortunately, we had some set backs:

No wheat, nuts, peanuts, milk at all.

Remove peas, oats, rice, banana then 2 weeks then try to add back in one at a time

His egg and milk allergies dropped but not enough to add back milk. We can try eggs, but only in baked goods that do not have wheat.

Light the Night - $2,287 and counting

I have recently discovered that new donations are still coming in to Team Laurel for LTN. I'm sorry that I am unable to see the new names, so thank you to those who have not been noted but have made recent donations!

Thank you to all donors and walkers! I am so moved by the donations and the folks who drove long distances to walk on my behalf. I regret that it was the night after chemo and that I could not be in attendance. I hope you all know that I was with you in spirit! Go Team Laurel!!!

Thank you to the donors as listed for the following walkers:

Richard Gerakitis
Sarah Freeman
Sue Lawrence
Brooks Arnold
Pam Parker
Ann Guyton

Kim Green

Kim Black

Mary Ann Hammond

Ruth LeBlanc:
Craig Woods
Linda Berry
Bob and Pat Lemeshka
Jane LeBlanc
Jospeph LeBlanc

Mickey Montevideo:
I know I am missing a few here:
Amy Parrish

Dana Heil:
Randy Friesel
Renee Milstead
Diana Heil
Freida Heil
Luch and Rob Venable

Paula Kay (Team Captain):
Barry Shephard
UBL Management
Angela McDonough
Christy Parham
Scott Wood

The Loran Smith Cancer Center

It is important to note that in addition to the overwhelming support of friends and family, I have had the benefit of community resources. The Loran Smith Cancer Center gave me a place to talk to someone about how to talk to a 3 year old about cancer. Lauren was great! She made me feel good about the choice to tell Walker that I had a ball in my chest which is a very silly thing to have in your chest. She really helped me to understand that children are egocentric and just want to know how their world is going to change. This was a huge piece of advice in being proactive about my hair loss, doctor visits, change in caregivers and change in mood.

Also, the Loran Smith Cancer Center offers a Look Good Feel Better program where they teach women to put on make up (something I need pre-cancer :) ), how to draw on brows and eyelashes if/when they fall out, how to wear wigs and other hair accessories. Most importantly it was a great place to spend time with brave women battling varying types and stages of cancer. Many caregivers were also in attendance and seemed to benefit from sharing their stories too.

This is a resource used by folks as far as Atlanta. Athens is truly lucky to have such a special place of healing.

The Good, The Bad, The Ugly

The Good: PET/CT Scan II

The results of the PET/CT were very good. All spots in question are gone...Yipee!!! There is what they call avidity around the edges of the mass/tumor in my chest. The SUV is 7 and it was 16 on the first PET/CT, so this too is good news. The size of the tumor was inconclusive, but based on my lack of symptoms, I feel certain it is significantly smaller. So, the action plan is to continue as planned 2 more treatments and then possibly radiation...2/3 of the way done!!!

The Bad: Chemo IV

Chemo IV was the pits, but at least I knew for certain it was working. Only two more to go!!

The Ugly: Fat and Bald

Who knew that you could gain weight while having cancer? Leave it to me (and all that fine food that everyone has been making for us!) Well at least I have an appetite and being bald does have perks...I don't have to fix my hair....just choose b/t fun wig, conservative wig, ball cap :)

Tuesday, September 4, 2007

HALFWAY: What is next?

OK, I'm halfway through my treatments (we hope). So here is the plan:

PET/CT Scan on 9/14: I expect results no sooner than the morning of chemo IV. This scan will tell if the tumors are shrinking and if the disease is still alive and present. In my mind the biggest question mark is my equivocal abdominal and lung spots. If they grew that is worst case. If they stay the same, they are likely benign. If they go away or shrink, they are likely lymphoma responding to treatment. Benign sounds good, but I like the idea of it just being lymphoma and going away????

If everything is working (as we suspect it is), then we continue with my treatments as planned.
If not, I return to Emory to discuss stem cell transplant....I have been instructed by Drs. Vrana and Wiggans not to even "go there". As a planner this is not my nature, but I feel pretty confident as do they (just b/c I could actually lean back in my seat after the first treatment) that the treatments are working.

If everything is working, but there is still some issue about the remaining tumor at the end of treatment, I may need radiation...also to be determined at Emory.


I really want to address the port thing for those who may stumble on my blog while searching for information about Lymphoma. It was the biggest surprise to me of all of my procedures with the exception of the scar across my throat from my second biopsy.

The port, I thought was just an advance line for an IV. Something they put into my arm in a matter of minutes. My port was not that way. It was a titatinum, nickel sized plug with lines coming out it. The plug is where the needle goes when you have treatment or for drawing blood so that they don't have to "find" your veins. The lines run through my veins to dump out into my heart area....I'm not a doctor, so I'm not sure I've got the details exactly right...but this thing is inside my arm and runs to my heart. I just wish I had been prepared for that type of procedure when I went into the hospital.

Fortunately, I had a pleasant conversation with the surgeon while he placed it though I kept my eyese closed. Most impotantly, it was totally worth it!!!!! The day they inserted the port it took 4 tries to find a vein that would work. I could not bear the idea of facing 6 treatment days of "vein finding". The port gives the nurses direct access and with a little lidocaine...I don't even feel the needle! It rocks!!!!!


I admit it, just like eveyone else, I thought I want to live...who cares about hair??? It is just hair right???

That attitude lasted until I found out that I had less than 10 days to come to grips with going from long hair to bald! I had just finished three weeks of procedures and was headed to my first chemo and I was supposed to find a wig before all of my hair fell out. Truly, it was all a bit overwhelming.

As a planner, I naturally had a plan :) I was going to the same hairdresser who gave me my very first haircut (an emergency cut after having a braid get caught in a neighbor's go cart...long story). Nevertheless, John Siggers is a wonderful man who brought me in on a Sunday when the salon was closed to give me the best Farah Faucet haircut of the 80s! I was very excited!!!

I've been going to Siggers on and off ever since (basically when I can get to ATL for an appt.) since I was a child. All of my high school friends have either had their haircut there or worked there over the years.

Paula, my best friend for over 20 years called Siggers and set me up for a private cut so that I could control the hairloss (those that know me understand). Unfortunately, Walker, who is just 3 1/2 has a bit of a thing for hair. So, I had to prepare him that Mommy was getting the summer haircut just like the dogs. He could relate to that. I was not crazy about this reference as I knew how close to true it was.

Back to Siggers: Chad (John's son) took me in and brought me down to the special room to talk about the plan. He had the shears in his hand and I was feeling a bit sick. My friends Paula and Kim were there....cameras in hand to document the occassion (pictures attached if I can figure out how to add them to this blog). John could see the look in my face and decided to make it more of a haircut. They took me back up into the salon and gave a full wash, massage, eyebrow wax and even made a template for me when I lose my eyebrows along with some make up lessons and skin care. I felt like a princess on a day that should have been anything but fun.

Back down in the room, we all gossiped about high school....sorry Buckshot, some good stories came out about you :) John slowly took my hair shorter and shorter. He took his time to give me time to get used to the change. He is really a wonderful man! At the end I had the Melissa Ethridge haircut. I tried to be excited about it and the control I had taken, but everytime I looked into the mirror it was a reminder of what I was facing.

Siggers comped my whole visit and John gave me a great big bear hug...27 years after he had given me my first haircut...I told him to expect a happy ending!

It was actually 14 days exactly before I lost my hair. I thought to myself, I made it 2 weeks maybe I will be in the 8% who don't lose their hair??? Then, after brushing my teeth that very day, the hair was all in the sink. Mickey shaved the rest for me the next day.

I am now bald and getting comfortable with it. Some days I go out in just a ball cap and other days I wear my wigs. I have a fun one and a conservative one (they really don't look that much different). Walker and Stephen like the fun one b/c it looks messy like my real hair. I like the conservative one b/c it looks the way I want my hair to look :)

In the end, I really do just want to live and it really is just hair (that will ideally grow back)!



It is a bit tough to remember exactly how it felt to go to club chemo the first time since I am writing this as I have crossed the halfway point. I do remember being pretty nervous but happy to finally be taking some action. There is a big room that the folks who have just an hour or so sit and then there are private rooms for folks who have all day, new patients and people with reactions. So far I have been in a private room. It has a TV with a DVD and VCR, but CNBC seems to keep me entertained when I'm awake. It seems like there would be a lot of time to do things such as blog ;) but it is actually pretty busy. The nurses constantly change the IV and checking for reactions.

The plan was R-CHOP for 6 hours every three weeks for a total of six times. I react to the rituxan so they had to slow it down. Essentially, it was a burning in my eyes and some sinus irritation. This turned my chemo from a 6 hour day to a two day treatment for chemo I and then II and III went 8 hours in one day.

When I got home, I felt pretty good the first day (just the Rituxan). I did have severe nausea and needed to figure out how to use my prescriptions. Once I called the pharmacist and took my medication properly, I felt much better.

Otherwise, I had a few of the usual expected side effects. The continuing effects are nausea, fatigue, numb fingertips and some of the original symptoms I had at diagnosis.

With Chemo I, I had the Nulasta shot which kept my blood counts up. I did have some severe pain in my back that may have been a side effect of the shot.


I was pretty confident with chemo II. I felt like there was a chance it would be cumulative and that it might be scary like I originally expected, but was hopeful that it would be similar to chemo I. It was not too bad. We managed to knock it out in 8 hours. In addition to my usual side effects, I had a few days of feeling very faint and my blood counts dropped significantly. I did not have the Nulasta shot for chemo II nor did I have the back pain. Overall, it was pretty uneventful.


I went into chemo III feeling nauseous from the start. I slept a lot of the day and so it was pretty boring for my cabana boy, Stephen. I managed to knock it out in one day again, but it wiped me out. I could barely move when I got home and went straight to bed after a bowl of soup. Nausea has been much worse this time. I guess I'm finally getting the cumulative effects. I did not get the Nulasta shot this time far, not a problem. I feel much better today which is the Tuesday after my treatment on Thursday.