Update on Lymphoma
12-13-2010, 10:54 PM
#1
Race Director
Thread Starter
Update on Lymphoma
Many of you already know that back in July I was diagnosed with anaplastic large cell lymphoma, an aggressive fast moving cancer of the blood and lymph system. It was localized to the lymph nodes below my diaphragm yet could be found over the surface of my skin in the form of small red bumps (this is how the disease started). These bumps would occasionally form tumors - once in tumor form, it is officially anaplastic large cell lymphoma and considered "systemic" meaning it needs system wide treatment. In my case it was in the form of chemo once every three weeks in very large doses for four months (six doses in all).
I finished up the last treatment on November 17 and had my first scan done this past Wednesday 12/8. On 12/11 I found three or four new small red bumps on my right arm. Having not had the CT results I just held my breath.
Doctor called today and told me that the first scan was clean. All of the areas that had lit up the machine the time before were all dark - meaning that the lymphoma is no longer "systemic". However, because it started out on my skin as a t-cell skin displaysia, the new red bumps have to be watched very closely. It doesn't appear ready to vacate my body just yet and is too small to light up a scan.
As it stands my next appointment is in late January (unless these things spread or get bigger) at which time we will discuss and arrange for a stem cell harvest to be frozen. Should the disease come back as "systemic" the stem cells will be the best chance I have of a long term remission. I have received my lifetime maximum dose of the three chemo drugs I've been taking - I can't take any more of them for the rest of my life.
Should these spots get any bigger or spread I will have to go in sooner and move the procedure up in order to administer additional chemo, then immediately harvest the healthy blood cells.
In the meantime, the first scan is CLEAN!!!!! Yes I'm worried about the spots and what's to come, but I have to take the small victories when I can.
A few of you have been PMing me or texting me.....one or two have called religiously and I appreciate those of you that never wavered in your support of me and I wanted to let you know the update.
Phase I is now over........Phase II to begin the first week of February (and better not interfere with my trip down to Florida!)
Thank you to everyone that's consistently been there for me........Ed, Ruthanne you've been my backbone! Rebecca, sweetie you always make me smile and Linda.....I always had something special to open up in my e-mail.
George, your phone calls are amazing!! I love how its "how ya feeling?" and then we go right into engines and mechanics, lol and every other damn subject.
Bob (Weasel) you never ever forgot a single day or date of my chemo sessions. So many days you kept me company texting. Looking very forward to seeing you.
Ralph for bumping my thread up every few weeks.....you never forgot - that meant a lot to me.
JVM for the weekly PM's and encouragement.
John and Jano, my good friends who know exactly what I'm going through and who never failed to reach out a hand to me. You guys are amazing!!
JJ for the calls every few weeks to check in. Jesse for all the e-mails and phone calls letting me pick your brain about drugs and side effects. I certainly went into this prepared.
Bob6spd and the VDP guys.......like my brothers!! Carmen I'm sorry you were out sick when I stopped in last Friday - I brought coffee (no donuts per your request, lol). Feel better buddy and I'll be back next week.
And Danny...........Danny, who no matter how crappy he felt was there - whether it was on the phone, at breakfast, online......and I did the same for him and always will.
The biggest thank you goes to my amazing son Alex.....he took this whole thing right on the chin and stepped right up to the plate and never once wavered. He took responsibility for things most kids his age don't have to. He was respectful of my physical limitations and did all he could to be the "little man" of the house.
I learned a lot about people while I was going through this........things I won't ever forget.
But I did promise a lot of you that I would post up after the first scan. I'll try to keep this thread updated once the stem cell harvest is scheduled. Thank you again to all of you
I finished up the last treatment on November 17 and had my first scan done this past Wednesday 12/8. On 12/11 I found three or four new small red bumps on my right arm. Having not had the CT results I just held my breath.
Doctor called today and told me that the first scan was clean. All of the areas that had lit up the machine the time before were all dark - meaning that the lymphoma is no longer "systemic". However, because it started out on my skin as a t-cell skin displaysia, the new red bumps have to be watched very closely. It doesn't appear ready to vacate my body just yet and is too small to light up a scan.
As it stands my next appointment is in late January (unless these things spread or get bigger) at which time we will discuss and arrange for a stem cell harvest to be frozen. Should the disease come back as "systemic" the stem cells will be the best chance I have of a long term remission. I have received my lifetime maximum dose of the three chemo drugs I've been taking - I can't take any more of them for the rest of my life.
Should these spots get any bigger or spread I will have to go in sooner and move the procedure up in order to administer additional chemo, then immediately harvest the healthy blood cells.
In the meantime, the first scan is CLEAN!!!!! Yes I'm worried about the spots and what's to come, but I have to take the small victories when I can.
A few of you have been PMing me or texting me.....one or two have called religiously and I appreciate those of you that never wavered in your support of me and I wanted to let you know the update.
Phase I is now over........Phase II to begin the first week of February (and better not interfere with my trip down to Florida!)
Thank you to everyone that's consistently been there for me........Ed, Ruthanne you've been my backbone! Rebecca, sweetie you always make me smile and Linda.....I always had something special to open up in my e-mail.
George, your phone calls are amazing!! I love how its "how ya feeling?" and then we go right into engines and mechanics, lol and every other damn subject.
Bob (Weasel) you never ever forgot a single day or date of my chemo sessions. So many days you kept me company texting. Looking very forward to seeing you.
Ralph for bumping my thread up every few weeks.....you never forgot - that meant a lot to me.
JVM for the weekly PM's and encouragement.
John and Jano, my good friends who know exactly what I'm going through and who never failed to reach out a hand to me. You guys are amazing!!
JJ for the calls every few weeks to check in. Jesse for all the e-mails and phone calls letting me pick your brain about drugs and side effects. I certainly went into this prepared.
Bob6spd and the VDP guys.......like my brothers!! Carmen I'm sorry you were out sick when I stopped in last Friday - I brought coffee (no donuts per your request, lol). Feel better buddy and I'll be back next week.
And Danny...........Danny, who no matter how crappy he felt was there - whether it was on the phone, at breakfast, online......and I did the same for him and always will.
The biggest thank you goes to my amazing son Alex.....he took this whole thing right on the chin and stepped right up to the plate and never once wavered. He took responsibility for things most kids his age don't have to. He was respectful of my physical limitations and did all he could to be the "little man" of the house.
I learned a lot about people while I was going through this........things I won't ever forget.
But I did promise a lot of you that I would post up after the first scan. I'll try to keep this thread updated once the stem cell harvest is scheduled. Thank you again to all of you
Last edited by TryNkeepUp; 12-13-2010 at 11:02 PM.
12-13-2010, 11:44 PM
#2
Drifting
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Well put my buddy. obviously Alex handled it perfectly. I knew he would understand better than most kids his age. You have so much support from so many great people, you're just gonna come thru this just fine. I'm always rootin for you buddy.
You don't give yourself enough credit. I know what you went thru. the fatigue, the pain, the numbness and everything else. But still you stood tall in spite of cancer bringing you down at every turn. You continued to be a supermom and thats not easy to do. You brought Alex up just like before you were inflicted with this dreaded disease. I am proud to a friend of a very courage's woman. If there is anything I can do to help you know where I am buddy.
You don't give yourself enough credit. I know what you went thru. the fatigue, the pain, the numbness and everything else. But still you stood tall in spite of cancer bringing you down at every turn. You continued to be a supermom and thats not easy to do. You brought Alex up just like before you were inflicted with this dreaded disease. I am proud to a friend of a very courage's woman. If there is anything I can do to help you know where I am buddy.
Last edited by TrumpVette; 12-14-2010 at 01:13 AM.
12-14-2010, 06:21 AM
#3
Le Mans Master
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Location: Hudson Valley Region, NY The "sonoma/napa" of the Northeast~~~~~ Are we there yet?
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St. Jude Donor '08
Debbie...You are a brave woman to post up everything here and be so candid. Alot of us suffer with things that we dont necessarily share or make public for a variety of reasons.
You and I may have had our differences in the past, maybe we still do.. I dont know. But in my eyes, its irrelevant. Things like this make you realize how lucky you are. It makes those of us who have our health or even some ailment, think about how much worse it can be.
And it makes us realize just what others might be going through. Kinda makes everything else seem trivial.
You have already realized how lucky you are to have the support of good friends and family. Continue to use that strength to spur on your spirits and recovery. Alot of people dont have that. We are all fortunate that a car, a mere piece of steel, has allowed us to come into one anothers lives.
Danny especially cant stop touting you and how great a support you have been for him.
I wish you and Alex a very wonderful Holiday Season, and hope to hear good news from you in the New Year.
You and I may have had our differences in the past, maybe we still do.. I dont know. But in my eyes, its irrelevant. Things like this make you realize how lucky you are. It makes those of us who have our health or even some ailment, think about how much worse it can be.
And it makes us realize just what others might be going through. Kinda makes everything else seem trivial.
You have already realized how lucky you are to have the support of good friends and family. Continue to use that strength to spur on your spirits and recovery. Alot of people dont have that. We are all fortunate that a car, a mere piece of steel, has allowed us to come into one anothers lives.
Danny especially cant stop touting you and how great a support you have been for him.
I wish you and Alex a very wonderful Holiday Season, and hope to hear good news from you in the New Year.
12-14-2010, 07:49 AM
#4
Team Owner
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St. Jude Donor '05-'08
Albert Einstein once said
"There are only two ways to live your life: as though nothing is a miracle, or as though everything is a miracle."
I believe we are looking at a Christmas Miracle.
"There are only two ways to live your life: as though nothing is a miracle, or as though everything is a miracle."
I believe we are looking at a Christmas Miracle.
12-14-2010, 08:00 AM
#5
Race Director
Deb, that is an amazing journey...and all the folks you listed are the answers to prayer.
We may pray for healing - for this thorn in the flesh to be removed - but He replies, My grace is sufficient for you, for My strength is made perfect in weakness.
He sustains you no matter what and you have documented that!
We may pray for healing - for this thorn in the flesh to be removed - but He replies, My grace is sufficient for you, for My strength is made perfect in weakness.
He sustains you no matter what and you have documented that!
12-14-2010, 08:33 AM
#6
Team Owner
Deb great news, we will keep the prayers going, those new little red bumps are just Christmas decorations 
12-14-2010, 11:21 AM
#7
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Deb, this is sounding pretty good. Yvonne and I will continue to pray for you!!!
Stay strong as you have done. YOu really do have a wonderful group of friends and that sure does help. There have been many many prayers headed your way!!!!
Have a wonderful Christmas Holiday!!!!!
We love you!!!!
Glenn & Yvonne
Stay strong as you have done. YOu really do have a wonderful group of friends and that sure does help. There have been many many prayers headed your way!!!!
Have a wonderful Christmas Holiday!!!!!
We love you!!!!
Glenn & Yvonne
12-14-2010, 01:50 PM
#10
Le Mans Master
I will add you to my prayer list to St Peregrine (Patron saint of Cancer victims). Don't lose faith, they have nade great advances in the cancer arena recently and are constantly coming up with new things.
I am a Stage III Lung Cancer survivor for 12 years now. Back when I was diagnosed they gave me a 5% 5 year survival rate. Somebody has to be part of the survival statistics and I say it might as well be you and me. I am sure you already know this but you can appreciate life so much more after a cancer diagnosis. Little things like sunsets and flowers just seem to be so much brighter.
My only advice is just make sure you are going to one of the accredited cancer instituites like HUP or even Jefferson.
I am a Stage III Lung Cancer survivor for 12 years now. Back when I was diagnosed they gave me a 5% 5 year survival rate. Somebody has to be part of the survival statistics and I say it might as well be you and me.
I am sure you already know this but you can appreciate life so much more after a cancer diagnosis. Little things like sunsets and flowers just seem to be so much brighter.My only advice is just make sure you are going to one of the accredited cancer instituites like HUP or even Jefferson.
12-14-2010, 02:37 PM
#12
Le Mans Master
We KNEW you could do it Deb!! The fight isn't completely over, but you've won ALL the rounds to date, and the victory celebration is well within sight (actually looking forward to that party, LOL) Your clean body scan is very good news indeed, and those little bumps are there to test your new and stronger immune system in what to do (the cancer cells are on the run out of your body and back to where they started). God and your new and improved immune system will bring us all a new Debbi that we'll all be "TryNkeepUp" with for many years to come. 
12-14-2010, 02:40 PM
#13
Le Mans Master
Deb,
I'm glad to hear that you had a clean scan. Every victory is a blessing, no matter how small. It's also a step towards winning the overall war.
Keep hanging in there. Attitude is everything.
I'm glad to hear that you had a clean scan. Every victory is a blessing, no matter how small. It's also a step towards winning the overall war.
Keep hanging in there. Attitude is everything.
12-14-2010, 04:33 PM
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Best wishes for Happy Holidays and a full recovery.
12-14-2010, 05:51 PM
#17
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I've got a few tears in my eyes now. They are for you, and the great news, and for those who have posted here, who have been your supporters and faithful, praying for your recovery. It is a wonderful season of the year even though I'm freezin my butt off. 
Small things to concern ourselves with, when we look at life in the whole scheme of things. Never give up, like Danny said. Maybe that's your new screen name NEVRGIVUP.
Small things to concern ourselves with, when we look at life in the whole scheme of things. Never give up, like Danny said. Maybe that's your new screen name NEVRGIVUP.
12-14-2010, 06:38 PM
#18
Drifting
Deb, Mike and I are thrilled to hear that you are doing so much better. We have kept you in our thoughts and prayers through this process. We will keep you there.
