As most of you know, Dave underwent his first round of treatment today. We arrived at The James this morning around 9:30 and were able to leave around 4:00. We didn't really know what to expect, but were pleasantly surprised with our own room and two very comfy reclining chairs by a big window. :) Dave tolerated the Epratuzimab very well with truly no side effects. Friday will be the real test as we were told that Rituximab causes more severe reactions. This will also be a longer day, believe it or not, as the IV drip must be stopped every time a reaction occurs. We met many lovely people today including other patients and staff. I suppose if you are going to get cancer, we are both feeling blessed to have such a great hospital right around the corner.
Dave is sleeping now and will definitely awake to pizza and chocolate chip cookies. :) His all time favorites for those of you who know him well. So I must get to it! But I wanted to thank all of you that have prayed so very hard for us and kept us in your thoughts. Not a day goes by that we don't feel grateful for the support of our friends and family.
Wednesday, July 30, 2008
Tuesday, July 29, 2008
The Verdict is in and....
we are approved! The insurance company called today and Dave's treatment is covered! You know we have been talking about small victories, but I'm putting this one down in the big victory category. Thanks for all of your thoughts and prayers. You know what they say, It takes a village...
Monday, July 28, 2008
It's Time to Pray
Okay troops...it's time to rally together. I'm asking that you each say an extra prayer for Dave tonight. We are fighting pretty hard with the insurance company to get Dave's clinical trial paid for. I think Dave has talked to at least a dozen people today and we are definitely catching some resistance. We will know tomorrow at 2:00 if he gets to start treatment on Wednesday. Pray, cross your fingers, and rub your lucky rabbit's foot...we'll take whatever we can get.
Saturday, July 26, 2008
4 hours, 5 doctors, 6,000 forms...
and I'm not exaggerating! Okay, I may have estimated the forms a little high, but we did spend four hours at The James today and saw 5 different doctors, nurses, research coordinators, pharmacists, etc.
Let me start at the beginning. Dave and I had an 11:00 appointment with Dr. Blum, but she was running behind so we waited in our little 8 x 8 room until 1:00 when she walked in. Now don't get me wrong, this is really frustrating, but it's difficult to be upset with a women who holds an extreme amount of power. She is the one person Dave and I have decided has the knowledge and skill to treat him most effectively and you know we've shopped around. The other reason it's difficult to be upset with her is that she is calm, rationale, and never makes you feel as though you need to quit asking questions. She spends as much time as needed with her patients. Obviously this is also the reason she is running two hours behind. She enters and immediately apologizes for being so backed-up and, of course, Dave and I both respond with, "Oh, gosh...no big deal we totally understand." And we do understand, but I must admit the little voice in my head is saying, "Do you have any idea how hard it is to sit in that chair for two hours when your 8 months pregnant?" But I figure this is a little counterproductive at this point and opt to keep my thoughts to myself. :)
The last time we were in, Dr. Blum didn't have all the results of Dave's testing, but this time she does so she starts there. Just like the other oncologists we have seen, she makes sure we understand Dave is a Stage 4 Follicular Lymphoma patient with 5% bone marrow involvement. She talks specifically about the size of some of Dave's lymphnodes...some of them are pretty big. The good news is that none of them are pushing on vital organs and causing any concerns, but if left untreated, they may. She explains that she still feels the best treatment, at this time, is the clinical trial combining Rituxin and Epratuzimab. We had hoped this was the case and explain that we are in...and ready to get started.
Dave is really great about thinking both short and long term. He explains to her that his long term goal is to maintain the cancer much like a diabetic maintains their sugar levels. Short term he explains that he is hoping the clinical trial will knock him into remission before we have to decide on the next form of treatment. I know he wants to make sure his doctor has the same goals as he does and I'm proud of him for being able to so effectively articulate these to her. She totally agrees and takes it one step further saying that although there isn't really a cure, a bone marrow transplant may cure it down the road. It's the only possibility. And a cure is really her long term goal. We discuss Chemo after the trial and then the possibility of a transplant. Ultimately, we decide to focus on the here and now and begin to talk about the clinical trial.
I knew we wanted to start immediately, but I didn't know how quickly that would be. Dr. Blum fires away with, "How's next Wednesday? At this point, we begin to talk about the treatment itself and it's a little more involved then Dave and I originally understood. He needs to have a Petscan on Monday and then another CT scan to mark his start point Wednesday morning. He will be hooked up to an IV drip on Wednesday to administer the Epratuzimab. This takes several hours. On Friday, he will again be hooked up to an IV, this time for 6 hours, and the Rituxin will be administered. For the next three weeks, we will go every Wednesday, all day. On these days they will combine the drugs into one 6 hour treatment. After that the treatments are much further and fewer between, but ongoing for the next 9 months. Throughout the treatments he will have CT scans to monitor if the lymphnodes are shrinking...this is the goal in case I lost you.
After making the decision to jump in with both feet we had to meet with the research coordinator to sign the 6,000 forms I told you about and then the scheduler to make what seemed like 30 appointments. It was probably more like 10...pregnant women can be a bit dramatic. And that was the end of our 4 hour appointment....I wasn't exaggerating that part.
Regardless, Dave and I have a very long journey ahead of us. So many of you have commented on Dave and I's strength and positive attitude. Honestly, overall we are doing fantastic under the circumstances. We have found strength in our family, friends, and in prayer, but we aren't superhuman. :) I spent a few moments crying on Dave's shoulder in the stairwell at The James today. I couldn't tell you why exactly, but I do know this. I don't have cancer, my husband does and yet, he holds his head high and buries mine in his chest when I can't take anymore. He really is incredible!
Let me start at the beginning. Dave and I had an 11:00 appointment with Dr. Blum, but she was running behind so we waited in our little 8 x 8 room until 1:00 when she walked in. Now don't get me wrong, this is really frustrating, but it's difficult to be upset with a women who holds an extreme amount of power. She is the one person Dave and I have decided has the knowledge and skill to treat him most effectively and you know we've shopped around. The other reason it's difficult to be upset with her is that she is calm, rationale, and never makes you feel as though you need to quit asking questions. She spends as much time as needed with her patients. Obviously this is also the reason she is running two hours behind. She enters and immediately apologizes for being so backed-up and, of course, Dave and I both respond with, "Oh, gosh...no big deal we totally understand." And we do understand, but I must admit the little voice in my head is saying, "Do you have any idea how hard it is to sit in that chair for two hours when your 8 months pregnant?" But I figure this is a little counterproductive at this point and opt to keep my thoughts to myself. :)
The last time we were in, Dr. Blum didn't have all the results of Dave's testing, but this time she does so she starts there. Just like the other oncologists we have seen, she makes sure we understand Dave is a Stage 4 Follicular Lymphoma patient with 5% bone marrow involvement. She talks specifically about the size of some of Dave's lymphnodes...some of them are pretty big. The good news is that none of them are pushing on vital organs and causing any concerns, but if left untreated, they may. She explains that she still feels the best treatment, at this time, is the clinical trial combining Rituxin and Epratuzimab. We had hoped this was the case and explain that we are in...and ready to get started.
Dave is really great about thinking both short and long term. He explains to her that his long term goal is to maintain the cancer much like a diabetic maintains their sugar levels. Short term he explains that he is hoping the clinical trial will knock him into remission before we have to decide on the next form of treatment. I know he wants to make sure his doctor has the same goals as he does and I'm proud of him for being able to so effectively articulate these to her. She totally agrees and takes it one step further saying that although there isn't really a cure, a bone marrow transplant may cure it down the road. It's the only possibility. And a cure is really her long term goal. We discuss Chemo after the trial and then the possibility of a transplant. Ultimately, we decide to focus on the here and now and begin to talk about the clinical trial.
I knew we wanted to start immediately, but I didn't know how quickly that would be. Dr. Blum fires away with, "How's next Wednesday? At this point, we begin to talk about the treatment itself and it's a little more involved then Dave and I originally understood. He needs to have a Petscan on Monday and then another CT scan to mark his start point Wednesday morning. He will be hooked up to an IV drip on Wednesday to administer the Epratuzimab. This takes several hours. On Friday, he will again be hooked up to an IV, this time for 6 hours, and the Rituxin will be administered. For the next three weeks, we will go every Wednesday, all day. On these days they will combine the drugs into one 6 hour treatment. After that the treatments are much further and fewer between, but ongoing for the next 9 months. Throughout the treatments he will have CT scans to monitor if the lymphnodes are shrinking...this is the goal in case I lost you.
After making the decision to jump in with both feet we had to meet with the research coordinator to sign the 6,000 forms I told you about and then the scheduler to make what seemed like 30 appointments. It was probably more like 10...pregnant women can be a bit dramatic. And that was the end of our 4 hour appointment....I wasn't exaggerating that part.
Regardless, Dave and I have a very long journey ahead of us. So many of you have commented on Dave and I's strength and positive attitude. Honestly, overall we are doing fantastic under the circumstances. We have found strength in our family, friends, and in prayer, but we aren't superhuman. :) I spent a few moments crying on Dave's shoulder in the stairwell at The James today. I couldn't tell you why exactly, but I do know this. I don't have cancer, my husband does and yet, he holds his head high and buries mine in his chest when I can't take anymore. He really is incredible!
Thursday, July 24, 2008
A Night Out on the Town
I have to share this story as it really is just too funny. Dave and I decided from the very beginning, that we wanted to find a support group for people living with Lymphoma. So, Dave being my "techno-junkie" husband began his research online. He quickly found a group at the Lymphoma-Leukemia Society close to Zangmeister Center. Since we were going to be there to see Dr. Moore, we decided we would go check it out in hopes of picking other people's brains about their course of treatment, experiences, etc.
I don't know how to explain to what I had expected, but it wasn't this. Upon entering, we realize we are late for a potluck. Keep in mind....potlucks typically require you to bring a dish to share. That wasn't a requirement on the website, I promise. The other prerequisite not noted in the description is that you should be eligible for a Golden Buckeye Card. I'm certainly not judging the crowd here...I'm just letting you know we looked a little out of place. :) I suppose we should have expected this as Dr. Keubler told us Dave is the youngest Follicular Lymphoma patient he had ever seen. Ooops.
So just as Dave and I are planning our secret escape, "craft time" is introduced. Now you all know I love anything that involves markers and glue so we decide, "Oh heck, we don't have any other plans...let's stay and see what we can learn."
I just have to tell each of you that we actually had a great time. My husband was apparently Martha Stewart's brother in a former life because he actually cut and sewed. You can see his final masterpiece in the picture I attached. We met lots of wonderful people who were more than willing to share their stories with us. My heart goes out to each and everyone of them for, as Oprah would say, "Living their best life." That's exactly what Dave and I are doing and they helped remind us exactly what life is all about. We will probably look for a group a little more in our age bracket, but it was definitely not a night wasted none the less.
Read the following post if you would like to hear about our appointment with Dr. Moore.
Wednesday, July 23, 2008
Mandy's Assigning Homework...you'll understand by the end.
We pull into the Zangmeister Center, located by the airport and I quickly realize it looks like a spa...very promising. (he, he) I don't know how many of you have been to The James Cancer Hospital, but it's not very warm and inviting...more like, well...a hospital.
Despite my love of the layout here, especially the waterfalls, we are here to meet Dr. Moore for what we are hoping will be our third and final opinion. We whole-heartedly expect his treatment plan to be in-line with Dr. Kuebler's very scientific "Wait and See" approach. We have heard through the grapevine that Dr. Kuebler and Dr. Moore are friends and practice medicine under similar beliefs. I still can't believe we now consider ourselves part of Lymphoma Social Network and even stranger yet that there is a "Lymphoma Grapevine". Beside the point I suppose.
Dr. Moore enters the room and begins by examining Dave. Each doctor has done this and each time I sit and patiently watch the doctor's face for some indication of what he/she feels. I don't know what I'm waiting for, a raised eyebrow or a puzzled lip...but doctor's seem to have mastered the infamous poker face. They must teach them this at med school. Dr. Moore is no exception.
He eventually sits down and begins the "What is Follicular Lymphoma?" speech. Although Dave and I have heard three doctor's give us this information, as well as, about 600 Lymphoma Websites, we sit attentively and look intrigued while longing for the part where he tells us what he would do if he were us.
When this time arrives, I notice we both sit up a little straighter in anticipation. Dr. Moore says at this point he beieves the "Wait and See" approcah is out of the question. Dave is a Stage 4 Lymhoma patient, but Dr. Moore has greater concerns with Dave's family history. I hear his point loud and clear. With a history this extensive, Dr. Moore feels Dave's Lymphoma may not be typical. It may grow differently and he doesn't want to wait around to see what kind of beast we are dealing with...fine with me, I think to myself. He goes on to suggest that we look into clinical trials. He talks about the benefits of doing these and how they truly include some of the best treatment plans available.
His suggestion is that Dave participate in a clinical trial that combines a very aggressive form of chemo with one of two drugs. I'm scared to look up at Dave at this point. Going into this, I know Dave doesn't want to do Chemo right away and I'm afraid if I look at him now, his face will look worried and I'll be unable to ask educated questions. So...I continue to stare at Dr. Moore and we fire away with our questions and concerns.
Here is the bottom line. 1. Chemo is extremely difficult on your body. It makes you susceptible to other forms of cancer, illnesses, and can make you extremely sick both during it's duration and permanently following. 2. Starting Chemo starts "The Chemo Clock" I've written about previously. 3. Starting Chemo would mean Dave would be mid-treatment when Marshall is born and most likely unable to fully enjoy his arrival. 4. Chemo can follow the clinical trial at The James if needed.
We ask Dr. Moore about The James' clinical trial compared to his and he says, " I can't say that one is better than the other. I just know Dave needs treatment." I know before Dave and I's eyes ever meet or words are ever spoken that we will be doing the clinical trial at The James.
When we get in the car, we agree, as I know we would. We meet with our now "official" doctor, Dr. Kristi Blum on Friday to tell her of our decision. For those of you who know me well, you know I'm a list maker. It drives Dave completely insane, but it's how I get things done. And, frankly, how I get him to do things too. :) My point is...I'm sending each of you a "Mandy-To-Do-List".
So many of you have been praying for Dave and I and we have truly felt the impact of your prayers. Today, I have some specific requests.
1. Pray that Dr. Blum still feels Dave is a candidate for the clinical trial after reading his full body CT scan and knowing that the lymphoma is in his bone marrow.
2. Pray that our insurance will cover the clinical trial.
3. Pray that Dave and I are making the best decision and that we continue to find courage within ourselves and one another to fight the best fight we have in us.
Despite my love of the layout here, especially the waterfalls, we are here to meet Dr. Moore for what we are hoping will be our third and final opinion. We whole-heartedly expect his treatment plan to be in-line with Dr. Kuebler's very scientific "Wait and See" approach. We have heard through the grapevine that Dr. Kuebler and Dr. Moore are friends and practice medicine under similar beliefs. I still can't believe we now consider ourselves part of Lymphoma Social Network and even stranger yet that there is a "Lymphoma Grapevine". Beside the point I suppose.
Dr. Moore enters the room and begins by examining Dave. Each doctor has done this and each time I sit and patiently watch the doctor's face for some indication of what he/she feels. I don't know what I'm waiting for, a raised eyebrow or a puzzled lip...but doctor's seem to have mastered the infamous poker face. They must teach them this at med school. Dr. Moore is no exception.
He eventually sits down and begins the "What is Follicular Lymphoma?" speech. Although Dave and I have heard three doctor's give us this information, as well as, about 600 Lymphoma Websites, we sit attentively and look intrigued while longing for the part where he tells us what he would do if he were us.
When this time arrives, I notice we both sit up a little straighter in anticipation. Dr. Moore says at this point he beieves the "Wait and See" approcah is out of the question. Dave is a Stage 4 Lymhoma patient, but Dr. Moore has greater concerns with Dave's family history. I hear his point loud and clear. With a history this extensive, Dr. Moore feels Dave's Lymphoma may not be typical. It may grow differently and he doesn't want to wait around to see what kind of beast we are dealing with...fine with me, I think to myself. He goes on to suggest that we look into clinical trials. He talks about the benefits of doing these and how they truly include some of the best treatment plans available.
His suggestion is that Dave participate in a clinical trial that combines a very aggressive form of chemo with one of two drugs. I'm scared to look up at Dave at this point. Going into this, I know Dave doesn't want to do Chemo right away and I'm afraid if I look at him now, his face will look worried and I'll be unable to ask educated questions. So...I continue to stare at Dr. Moore and we fire away with our questions and concerns.
Here is the bottom line. 1. Chemo is extremely difficult on your body. It makes you susceptible to other forms of cancer, illnesses, and can make you extremely sick both during it's duration and permanently following. 2. Starting Chemo starts "The Chemo Clock" I've written about previously. 3. Starting Chemo would mean Dave would be mid-treatment when Marshall is born and most likely unable to fully enjoy his arrival. 4. Chemo can follow the clinical trial at The James if needed.
We ask Dr. Moore about The James' clinical trial compared to his and he says, " I can't say that one is better than the other. I just know Dave needs treatment." I know before Dave and I's eyes ever meet or words are ever spoken that we will be doing the clinical trial at The James.
When we get in the car, we agree, as I know we would. We meet with our now "official" doctor, Dr. Kristi Blum on Friday to tell her of our decision. For those of you who know me well, you know I'm a list maker. It drives Dave completely insane, but it's how I get things done. And, frankly, how I get him to do things too. :) My point is...I'm sending each of you a "Mandy-To-Do-List".
So many of you have been praying for Dave and I and we have truly felt the impact of your prayers. Today, I have some specific requests.
1. Pray that Dr. Blum still feels Dave is a candidate for the clinical trial after reading his full body CT scan and knowing that the lymphoma is in his bone marrow.
2. Pray that our insurance will cover the clinical trial.
3. Pray that Dave and I are making the best decision and that we continue to find courage within ourselves and one another to fight the best fight we have in us.
Sunday, July 20, 2008
A Week of Decisions
Here we are...five weeks into our journey with the "C" word and it's time to make a few decisions. I couldn't be more ready to get this party started. For those of you who know me well," patient" is not a word typically used when descibing my disposition. Especially by my husband. One of my largest personal struggles throughout the last few weeks has been maintaining my composure (a.k.a...sweetness) while trying to schedule Dave doctor's appointments, get results from testing, and even sometimes talking to a real person on the other end of the line. The medical field can be very challenging, at best, on certain days. Receptionists have said to me..."We can't get him in for three weeks because he is a new patient." My mom has told me several times that I must be very nice to these people as they are going to be a large part of our lives over the next few months, and I get this...but I want to say, "Of course he is a new patient...having an oncologist isn't quite like having a dentist. We all have teeth, so we all need a dentist...we don't all have cancer...you get the idea. :) But I have learned quickly and have made many friends at these offices. :) Dave would love to fill all of you in on these stories...he finds them wildly entertaining.
So, now that we have been able to get our initial appointments scheduled we can officially call Dave a "patient" in these practices and won't have to wait as long for follow-up visits. Dave and I spend a lot of time talking about small victories...this definitely qualifies as a small victory from my stand point.
Friday we got a call from Dr. Kuebler saying that Dave has been staged. He is considered to be a stage 4 Follicular Lymphoma patient. Please keep in mind before you freak out that we suspected this would be the case. Dr. Blum had told us 95% of people diagnosed with this disease are diagnosed at stage 4. This means that he has swollen lymph nodes throughout his entire body with involvement in his bone marrow. We won't know how much bone marrow is effected until this week. Dr. Kuebler ony gets confirmation via phone of bone marrow involvement, he isn't given a percentage until he is able to read the report. The upside to this is that Dave's bloodwork came back perfect last week. The doctor confirmed that if all of his bone marrow was affected, his red and white blood cell count would be off and it isn't...small victories, right?
The other part of the equation to remember is that Stage 4 Follicular Lymphoma is not like Stage 4 Breast cancer. Treatment doesn't necessarily change based on the stage, it is based more on Dave's symptoms. And remember, he doesn't currently have any. You also must remember that treatment typically responds the same at all stages. We just need to decide what that treatment will look like.
This leads me to Our Week of Decisions. We know that Dr. Kuebler likes The Wait and See Approach. This pretty much throws what little amount of patience I have out the window, but the more we read, the more this plan does make sense. Dr. Blum likes the Clinical Trial Approach using a combination of drugs that are not very evasive and have been fairly successful in patients. The hope here is that Dave would go into remission for several years before needing a more dramatic treatment. It's only eight, one-hour sessions. Don't worry, I've reiterated that the baby is coming in 58 days...hence my sense of urgency to get this party started. :) But we musn't forget our appoinment with Dr. Moore, this Wednesday. After we meet with him, we will decide what the plan is going to be.
Dave and I have found an unbelievable amount of strength in ourselves and within each other throughout this process. We are continually overwhelmed by the support we have received from friends and family members. I don't know how he does it, but my husband wakes up every morning and loves life. He is amazing in more ways than I would ever be able to describe. We find ourselves laughing more and living more than we did a month ago...and that isn't a small victory, it's a big one!
So, now that we have been able to get our initial appointments scheduled we can officially call Dave a "patient" in these practices and won't have to wait as long for follow-up visits. Dave and I spend a lot of time talking about small victories...this definitely qualifies as a small victory from my stand point.
Friday we got a call from Dr. Kuebler saying that Dave has been staged. He is considered to be a stage 4 Follicular Lymphoma patient. Please keep in mind before you freak out that we suspected this would be the case. Dr. Blum had told us 95% of people diagnosed with this disease are diagnosed at stage 4. This means that he has swollen lymph nodes throughout his entire body with involvement in his bone marrow. We won't know how much bone marrow is effected until this week. Dr. Kuebler ony gets confirmation via phone of bone marrow involvement, he isn't given a percentage until he is able to read the report. The upside to this is that Dave's bloodwork came back perfect last week. The doctor confirmed that if all of his bone marrow was affected, his red and white blood cell count would be off and it isn't...small victories, right?
The other part of the equation to remember is that Stage 4 Follicular Lymphoma is not like Stage 4 Breast cancer. Treatment doesn't necessarily change based on the stage, it is based more on Dave's symptoms. And remember, he doesn't currently have any. You also must remember that treatment typically responds the same at all stages. We just need to decide what that treatment will look like.
This leads me to Our Week of Decisions. We know that Dr. Kuebler likes The Wait and See Approach. This pretty much throws what little amount of patience I have out the window, but the more we read, the more this plan does make sense. Dr. Blum likes the Clinical Trial Approach using a combination of drugs that are not very evasive and have been fairly successful in patients. The hope here is that Dave would go into remission for several years before needing a more dramatic treatment. It's only eight, one-hour sessions. Don't worry, I've reiterated that the baby is coming in 58 days...hence my sense of urgency to get this party started. :) But we musn't forget our appoinment with Dr. Moore, this Wednesday. After we meet with him, we will decide what the plan is going to be.
Dave and I have found an unbelievable amount of strength in ourselves and within each other throughout this process. We are continually overwhelmed by the support we have received from friends and family members. I don't know how he does it, but my husband wakes up every morning and loves life. He is amazing in more ways than I would ever be able to describe. We find ourselves laughing more and living more than we did a month ago...and that isn't a small victory, it's a big one!
Wednesday, July 16, 2008
BMB - thats not so bad
The morning started off innocently enough. My brother drove in from IN to drive me to my appointment today. Words cannot describe how much I love him, not only for driving me today, but also the support, the encouragement, and just plain being my brother. For those that have met him, you know he is defintely the comedian in the family and can turn a room to laughter in no time flat. The side that most dont get to see is the caring, concerning brother and I truly got to see that today, of course still mixed with the quick chance for some laughter. I am truly blessed to have such a wonderful brother!
First up a full body CT scan. After drinking 900 ml of this YUMMY (NOT) tasting raspberry flavored "milk", I was hooked up to an IV (as with my previous scan) and shot full of concentrate. The CT machine is an interesting beast. Picture a large doughnut with you sliding back and forth between the hole. It makes all these funny whirring and grrring sounds, and never seems anything is really happening. In about 10 mins you are all done :) Yeahhhhhh. Now its on to the BMB, but first a quick check of my blood, which I am happy to report is ALL PERFECT (GOOD NEWS).
So what is a BMB you may ask ... it is the three letter acronym for Bone Marrow Biopsy. Since we are using this site to inform, I will also try to keep everyone up with our new found lingo as well :). Today, is probably the day I have been dreading most since my diagnosis. I have heard BMB's are quiet painful. I handle needles very well, but I have been extremely "anxious" about this procedure. During our first visit to Dr. Kuebler he said (and I quote), "I am the best around doing BMB. You will be in an out in 10 minutes, and unlike other doctors, I do both sides." I have to say the man was true to his word. Yes there was some pain, but nothing what I had been lead to believe. Actually as the title of this posts says "that wasn't so bad" :). During the BMB he made one of the funniest statements to the nurse. After extracting the first sample of tissue, he said, "That's a an excellent Kuebler sample right there". Yes the man is confident and I definitely like that.
So whats in store --- The two test today will stage my disease. We are leaning toward stage 3 at this point, but if it is in my marrow will make me a stage 4. If interested you can read more about grading and staging at this site.
Finally for today, I want to say many many many thanks to everyone for the birthday e-cards, the phone calls, gifts, and thoughts. It was very touching to know that I have surrounded myself (or you guys just couldn't get rid of me) with such loving, caring, and wonderful people. Mandy and I have been amazed at the outpouring of support and the unconditional generosity of everyone. Please continue to keep us in your thoughts and prayers.
First up a full body CT scan. After drinking 900 ml of this YUMMY (NOT) tasting raspberry flavored "milk", I was hooked up to an IV (as with my previous scan) and shot full of concentrate. The CT machine is an interesting beast. Picture a large doughnut with you sliding back and forth between the hole. It makes all these funny whirring and grrring sounds, and never seems anything is really happening. In about 10 mins you are all done :) Yeahhhhhh. Now its on to the BMB, but first a quick check of my blood, which I am happy to report is ALL PERFECT (GOOD NEWS).
So what is a BMB you may ask ... it is the three letter acronym for Bone Marrow Biopsy. Since we are using this site to inform, I will also try to keep everyone up with our new found lingo as well :). Today, is probably the day I have been dreading most since my diagnosis. I have heard BMB's are quiet painful. I handle needles very well, but I have been extremely "anxious" about this procedure. During our first visit to Dr. Kuebler he said (and I quote), "I am the best around doing BMB. You will be in an out in 10 minutes, and unlike other doctors, I do both sides." I have to say the man was true to his word. Yes there was some pain, but nothing what I had been lead to believe. Actually as the title of this posts says "that wasn't so bad" :). During the BMB he made one of the funniest statements to the nurse. After extracting the first sample of tissue, he said, "That's a an excellent Kuebler sample right there". Yes the man is confident and I definitely like that.
So whats in store --- The two test today will stage my disease. We are leaning toward stage 3 at this point, but if it is in my marrow will make me a stage 4. If interested you can read more about grading and staging at this site.
Finally for today, I want to say many many many thanks to everyone for the birthday e-cards, the phone calls, gifts, and thoughts. It was very touching to know that I have surrounded myself (or you guys just couldn't get rid of me) with such loving, caring, and wonderful people. Mandy and I have been amazed at the outpouring of support and the unconditional generosity of everyone. Please continue to keep us in your thoughts and prayers.
Friday, July 11, 2008
Two Doctors...Two Opinions
This afternoon Dave and I headed to The James Cancer Hospital for what would be our second opinion. We assumed that she would have a different perspective than Dr. Kuebler, but we didn't expect her theories to be quite so different.
Dr. Kristi Blum is young, aggressive, and to the point. Typically, my kinda girl. However, the variables change a bit when we are discussing the man I love. Upon entering the room, she gave Dave a thorough examination. She felt swollen lymph nodes in places the other doctors had not. Although I would like to believe that she has no idea what she's doing...she sure seemed pretty confident. I should also add that she isn't just an oncologist...she is an oncologist with a specialty in Non-Hodgkins Lymphoma.
She said at this point she could tell Dave was at least in Stage 3, Grade 1, Non-Hodgkins, Follicular Lymphoma. Say that three times fast! She also added that 95% of people with this diagnosis find out they are in Stage 4 with infected bone marrow as well. Of course, we won't know any of this until next week when Dave has his full body CT scan and bone marrow biopsy. She went on to tell us that the swollen nodes are fairly large in his groin...3-4 cm each. The sizes will also be verified by the CT scan.
So...here we are again. Except now we are 66 days away from the arrival of Marshall instead of 73! We begin to talk treatment. I'm expecting her to say...let's take the "Wait and See" approach as Dr. Kuebler suggested. Apparently these two doctors don't bounce ideas off each other at happy hour because their ideas for Dave's treatment are very different. Although she says she does often times take the "Wait and See" approach, she doesn't like to do it with young patients. She spoke to the fact that cancers in general, but specifically Lymphoma, tend to be more aggressive in younger patients and that therefore, we need to be more aggressive in our treatment as well. She told us that based on her gut feelings, he would need treatment in 3-6 months. Obviously very different from Dr. Kuebler's..."it could be 14 years before treatment is needed" approach.
What does this all mean? Well, she had a two options for us to think about. The first option is Chemo. If you read my previous post, you understand the drawbacks to starting Chemo. Not only does it start the remission clock, it has pretty nasty side effects. The second option is a clinical trial starting in the next few months. This trial combines two drugs that have been used very effectively alone to put Follicular Lymphoma patients into remission. There are very little side effects and it can always be followed with Chemo if it isn't successful.
I know you're thinking, "What does a Clinical Trial mean? ... Does it mean it was used on lab rats first and showed promise so now let's try it on Dave? It's okay...that's what I was thinking too. The doctor gave us the research to read, as well as, assuring us that it has been used on humans in previous phases with over 75% success. We spent a lot of time sitting and talking with the doctor about all the pros and cons of these drugs. I'm not going to go into all the details as I'm sure I've already lost you... :) I know at this point I looked over at Dave and realized we both must look like deer in headlights.
The last thing she touched on was a bone marrow transplant down the road. She said we needed to meet with a transplant specialist to discuss finding a donor for Dave at some point. She said that it almost always comes to this and and we need to be prepared.
We left the appointment knowing four things:
#1. We have to get the results of the CT scan and bone marrow biopsy before anything can be
determined. We will meet with Dr. Blum again on July 25th.
#2. We are meeting with a third oncologist on July 23rd to get our third, different opinion. :)
#3. We found ourselves laughing hysterically when we got to the car and realized we'd received
a $40.00 parking ticket while we were in our 2 hour appointment. Funny how cancer puts things into perspective.
#4. We were going out for pizza and ice cream! Decisions could be made tomorrow!
Dr. Kristi Blum is young, aggressive, and to the point. Typically, my kinda girl. However, the variables change a bit when we are discussing the man I love. Upon entering the room, she gave Dave a thorough examination. She felt swollen lymph nodes in places the other doctors had not. Although I would like to believe that she has no idea what she's doing...she sure seemed pretty confident. I should also add that she isn't just an oncologist...she is an oncologist with a specialty in Non-Hodgkins Lymphoma.
She said at this point she could tell Dave was at least in Stage 3, Grade 1, Non-Hodgkins, Follicular Lymphoma. Say that three times fast! She also added that 95% of people with this diagnosis find out they are in Stage 4 with infected bone marrow as well. Of course, we won't know any of this until next week when Dave has his full body CT scan and bone marrow biopsy. She went on to tell us that the swollen nodes are fairly large in his groin...3-4 cm each. The sizes will also be verified by the CT scan.
So...here we are again. Except now we are 66 days away from the arrival of Marshall instead of 73! We begin to talk treatment. I'm expecting her to say...let's take the "Wait and See" approach as Dr. Kuebler suggested. Apparently these two doctors don't bounce ideas off each other at happy hour because their ideas for Dave's treatment are very different. Although she says she does often times take the "Wait and See" approach, she doesn't like to do it with young patients. She spoke to the fact that cancers in general, but specifically Lymphoma, tend to be more aggressive in younger patients and that therefore, we need to be more aggressive in our treatment as well. She told us that based on her gut feelings, he would need treatment in 3-6 months. Obviously very different from Dr. Kuebler's..."it could be 14 years before treatment is needed" approach.
What does this all mean? Well, she had a two options for us to think about. The first option is Chemo. If you read my previous post, you understand the drawbacks to starting Chemo. Not only does it start the remission clock, it has pretty nasty side effects. The second option is a clinical trial starting in the next few months. This trial combines two drugs that have been used very effectively alone to put Follicular Lymphoma patients into remission. There are very little side effects and it can always be followed with Chemo if it isn't successful.
I know you're thinking, "What does a Clinical Trial mean? ... Does it mean it was used on lab rats first and showed promise so now let's try it on Dave? It's okay...that's what I was thinking too. The doctor gave us the research to read, as well as, assuring us that it has been used on humans in previous phases with over 75% success. We spent a lot of time sitting and talking with the doctor about all the pros and cons of these drugs. I'm not going to go into all the details as I'm sure I've already lost you... :) I know at this point I looked over at Dave and realized we both must look like deer in headlights.
The last thing she touched on was a bone marrow transplant down the road. She said we needed to meet with a transplant specialist to discuss finding a donor for Dave at some point. She said that it almost always comes to this and and we need to be prepared.
We left the appointment knowing four things:
#1. We have to get the results of the CT scan and bone marrow biopsy before anything can be
determined. We will meet with Dr. Blum again on July 25th.
#2. We are meeting with a third oncologist on July 23rd to get our third, different opinion. :)
#3. We found ourselves laughing hysterically when we got to the car and realized we'd received
a $40.00 parking ticket while we were in our 2 hour appointment. Funny how cancer puts things into perspective.
#4. We were going out for pizza and ice cream! Decisions could be made tomorrow!
Thursday, July 3, 2008
So...What is It?
We awoke yesterday morning with mixed anticipation of what the day might bring. Excited to finally be meeting with an oncologist, but with lumps in our throats as to what he may have to say. We knew nothing at this point could be definitive as Dave would first have to have the results of his full node biopsy. This too, was yesterday following our appointment with Dr. Kuebler.
I apologize if this post gets lengthy, but I want to give you all we know.
Dr. Kuebler explained to us that based upon the pathology report Dave has Follicular B-cell Lymphoma. However, this could change after the full node biopsy is analyzed. He described two types of lymphoma to us; favorable and unfavorable. As we listened to him describe these terms, we quickly realized they are a bit misleading. Follicular Lymphoma is a "favorable" cancer. Favorable basically means it is a chronic cancer that can never be cured...sounds like something you would describe as "favorable", huh? The reason it is put in this category is because it has a longer life expectancy than "unfavorable". Many people live for many, many years before they every show symptoms or even need treatment. Dave, fortunately, has no symptoms. In truth, we would have probably never gone to the doctor if he didn't have such a long family history of Lymphoma.
"Unfavorable" means it is an extremely aggressive form of Lymphoma with a much higher fatality rate if untreated. However, if treated it is curable.
So...going on the doctor's gut feeling of Follicuar Lymphoma, we began to talk about course of action. This is the most difficult part for me to wrap my mind around. There are four stages of Lymphoma. We know that Dave is at least in Stage Two as he has swollen nodes in more than one area. (neck, chest, and under his arms) Dr. Kuebler explained that by the time most patients are diagnosed with Lymphoma they are in Stage Four. However, Dave is also the youngest Follicular Lymphoma patient this doctor has ever seen and he is suppose to be "Nationally Renowned". We will not know his stage until we have a full body PetScan. (July 16th) He will also have a Bone Marrow biopsy this day.
Of course in my mind, at this point, I'm thinking...okay, let's get started. I realize it's not curable, but you need to fix my husband within the next 73 days because that's when this baby is coming! Dr. Kuebler thinks a little differently than I do apparently. He likes the "Wait and See" approach. This is a little confusing to me, but he tries to make me understand. Because this cancer is so slow-growing, he says they don't want to start chemo. Follicular Lymphoma does respond well to chemo, but always comes back. Remember it's not curable. Each remission gets shorter and shorter. So if they started chemo tomorrow, Dave may go into remission for 7 years. But in 7 years, when the cancer returns, he would have to do chemo again. This time the remission may only last 4 years. You get the idea...once you do chemo, the remission clock starts ticking.
If Dave has no symptoms and a good quality of life, there is no point in treating the cancer right now. I told you it's tough to wrap your mind around, didn't I?
Now we sit and wait for the "official" diagnosis to come back based on the full node biopsy. This should be Monday, July 7th. We are, of course, getting second opinion, next Friday with Dr. Kristi Blum at The James. We'll see what she has to say.
We know you have each been thinking and praying for us and we really do feel your love and support. Today was the first day that when I woke up Dave's cancer wasn't the first thing that popped in my mind. Maybe the second, but it's a start, right? :)
I do want to share with you the most touching part of yesterday's appointment. At one point, I asked the doctor..."Is Dave going to see this baby be born?" The doctor, very assertively looked back and both Dave and I and responded, " I whole-heartedly believe Dave is going to be around to pay Marshall's first college tuition bill." The power of words...are truly amazing!
I apologize if this post gets lengthy, but I want to give you all we know.
Dr. Kuebler explained to us that based upon the pathology report Dave has Follicular B-cell Lymphoma. However, this could change after the full node biopsy is analyzed. He described two types of lymphoma to us; favorable and unfavorable. As we listened to him describe these terms, we quickly realized they are a bit misleading. Follicular Lymphoma is a "favorable" cancer. Favorable basically means it is a chronic cancer that can never be cured...sounds like something you would describe as "favorable", huh? The reason it is put in this category is because it has a longer life expectancy than "unfavorable". Many people live for many, many years before they every show symptoms or even need treatment. Dave, fortunately, has no symptoms. In truth, we would have probably never gone to the doctor if he didn't have such a long family history of Lymphoma.
"Unfavorable" means it is an extremely aggressive form of Lymphoma with a much higher fatality rate if untreated. However, if treated it is curable.
So...going on the doctor's gut feeling of Follicuar Lymphoma, we began to talk about course of action. This is the most difficult part for me to wrap my mind around. There are four stages of Lymphoma. We know that Dave is at least in Stage Two as he has swollen nodes in more than one area. (neck, chest, and under his arms) Dr. Kuebler explained that by the time most patients are diagnosed with Lymphoma they are in Stage Four. However, Dave is also the youngest Follicular Lymphoma patient this doctor has ever seen and he is suppose to be "Nationally Renowned". We will not know his stage until we have a full body PetScan. (July 16th) He will also have a Bone Marrow biopsy this day.
Of course in my mind, at this point, I'm thinking...okay, let's get started. I realize it's not curable, but you need to fix my husband within the next 73 days because that's when this baby is coming! Dr. Kuebler thinks a little differently than I do apparently. He likes the "Wait and See" approach. This is a little confusing to me, but he tries to make me understand. Because this cancer is so slow-growing, he says they don't want to start chemo. Follicular Lymphoma does respond well to chemo, but always comes back. Remember it's not curable. Each remission gets shorter and shorter. So if they started chemo tomorrow, Dave may go into remission for 7 years. But in 7 years, when the cancer returns, he would have to do chemo again. This time the remission may only last 4 years. You get the idea...once you do chemo, the remission clock starts ticking.
If Dave has no symptoms and a good quality of life, there is no point in treating the cancer right now. I told you it's tough to wrap your mind around, didn't I?
Now we sit and wait for the "official" diagnosis to come back based on the full node biopsy. This should be Monday, July 7th. We are, of course, getting second opinion, next Friday with Dr. Kristi Blum at The James. We'll see what she has to say.
We know you have each been thinking and praying for us and we really do feel your love and support. Today was the first day that when I woke up Dave's cancer wasn't the first thing that popped in my mind. Maybe the second, but it's a start, right? :)
I do want to share with you the most touching part of yesterday's appointment. At one point, I asked the doctor..."Is Dave going to see this baby be born?" The doctor, very assertively looked back and both Dave and I and responded, " I whole-heartedly believe Dave is going to be around to pay Marshall's first college tuition bill." The power of words...are truly amazing!
Tuesday, July 1, 2008
One productive day
The day started off very busy with work and once again many phone calls to doctors. Dave will be having surgery @ 12:15 Wednesday July 2 to have the largest node on his neck removed. We are to see Dr. Kuebler at Columbus Oncology first thing in the morning as well. We have also scheduled to see Dr. Kristi Blum at the James Cancer Center for next week. Both Oncologists have said they need the largest node removed to determine type of lymphoma amongst other things.
We really appreciate the continued thoughts and prayers as we anxiously move through this process.
We really appreciate the continued thoughts and prayers as we anxiously move through this process.
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