It's been a couple of weeks since our last post - mainly because Elizabeth is doing very well. So, that is our good news. The bad news (more of it) is that I had to put my Mitzi down this morning. She has been sick for several months and this morning she apparently ruptured a tumor of her spleen. She was doing fine this morning (as fine as she could be given that she's been dropping weight like crazy the last 6 months). I went to get her a travel kennel for her and my little man Reese so that my mom could take them to Louisiana for the next few months while Elizabeth did her treatments. After I returned to the car within 20 minutes of travel to the store and back to the car, she had crashed pretty bad. She was not breathing well and she was unresponsive to nearly anything. She couldn't stand up much less walk so I put her in my lap and hauled ass to the vets office in Arlington. After doing her CBC and some x-rays, it was pretty obvious that without radical surgery - in which she would have needed a minimum of 2 blood transfusions beforehand to even get close to stable - that Mitzi would not make it much longer. Given that she likely had a cancerous tumor, the cost to do all of this with a dog as sick as she was didn't make much sense. So, with Elizabeth in Destin, I made the call to put her down and keep her suffering to a minimum. We loved that dog so very much. She was with us for over 9 years and the entirety of Elizabeth and I's marriage. To say she was our first "daughter" would be accurate. I am thankful for the 9 great years that we spent with her but Min Pins normally live to be over 15+ years so this was tough on us. I let Anna come and say her goodbye at the clinic and she was such a big girl but when we walked outside she let it all out. I suppose my crying didn't help matters much but I am so proud of my little girl as she is about as tough as they come. Needless to say, I'd prefer that we could go a few months without bad news. I am devastated about this dog - easily my favorite pet that I've ever owned. I'll need a new puppy soon so that I can get rid of this crappy feeling. I'm just numb. Might need a drink tonight.
On to Elizabeth - which this blog should be about anyway. She left for Destin for a few days at the beach with some friends. I know she is going to have a wonderful time. She has been feeling really good - her breathing is soooo much better than it was two weeks ago. Her itching stopped and it gives us a good feeling about how well the ESHAP is working. She got another small victory yesterday as we found out that Tulane worked very hard to secure a home infusion pump for her so that she can do her chemo out-patient instead of being in the hospital. Yay! Small wins - we'll take 'em!
So, chemo starts Monday and she is ready to get on with it. It gets her one step closer to a potential cure and that's what we are hoping for...to have her live well beyond me!! I know she will. I am not sure what she plans on doing with her hair, but it appears that it is starting to come out in chunks now. Dr. Pallera was actually quite surprised that she still had hair left given that ESHAP usually takes it away pretty quickly. He hadn't fully figured out that she is a bad-ass! He'll get it soon enough! Haha.
The last two weeks have been pretty great - until today! I hope this is all of the bad news that is left to come for us in the near future. We could use the break!
As always, thank you so very much for the thoughts and prayers. They mean a ton to us. We have been blessed to have such great people surrounding us and walking this journey with us!
My best,
Scott
Wednesday, May 30, 2012
Thursday, May 17, 2012
Destination...Tulane!
When we left off, I spoke of us going to meet with Dr. Hana Safah at Tulane in New Orleans. It seems that heading down there to get a second opinion for Elizabeth would be best - so that's what we did. We went to New Orleans on Tuesday afternoon and had a wonderful dinner at Grand Isle with my family (mom, dad, brother, sister and aunt). It was nice to have fresh fish - man, we miss that sooo much.
Our day at Tulane (yesterday) started early and we were treated as well as any persons could be treated. We met with Barry Marshall (VP of the transplant division) initially before meeting the nurses and doctor. Needless to say, my aunt Danita had the red-carpet rolled out for us thus making this very difficult time seem a little less stressful. We met with Dr. Safah around 9:00 and she went over everything from initial diagnosis to relapse diagnosis. We spent around 45 minutes discussing things with her - everything from the treatment options to her initial thoughts on our future plans. She - like any other doctor would - wants to become Elizabeth's primary care oncologist for now. She feels like she would be best served to have future chemo treatments and the stem cell transplant done at Tulane. After a little hesitation, we began to realize exactly why that was the case. She explained the stem cell treatment plan to us and specifically, the harvest procedure. During her next chemo cycle, Elizabeth will be given a Neupogen shot (which is similar to Neulasta). This shot is given every day in order to boost blood cell production - specifically white blood cells. Her blood counts will be monitored and the stem cells will need to be harvested at the right time, hence Dr. Safah wanting treatment to be performed in New Orleans under her supervision. It apparently takes 5-7 days after finishing the chemo regimen to get the blood counts to a level that is necessary for harvest. Typically, blood stem cells are located in the bone marrow. As I understand it, the chemo destroying the blood cells will be offset by the Neupogen injections. During the time that the new stem cells are actually in the blood versus the marrow, they will need to be harvested. Basically, we want to get the stem cells before the move back into the bone marrow so we have just a limited window to do so.
It looks like Elizabeth will be in New Orleans from June 4th-mid-June and will return to Memphis to have a scan done to ensure that the ESHAP regimen is working (shrinking her tumors). If she has a sensitive disease (i.e the tumors are shrinking) then the high-dose chemotherapy with stem cell transplant will follow. If all goes well, then Elizabeth will return to New Orleans in early July and will receive her high-dose chemo in the hospital (this regimen is BEAM). It is supposed to be pretty devastating but with the way she has handled ESHAP, who knows! She has just shrugged that off like it was no big deal. Heck, she is at work today - doing what she loves! I am constantly amazed at her strength, especially given the stories I had heard about ESHAP. It's pretty remarkable. Moving on...the high dose therapy will require about a 17-20 hospitalization - 7 days of chemo followed by the actual transplant. Once her blood counts come back to appropriate levels, then she will be free to go home. This is the good news. Bad news is that she really needs to stay away from the kids for the 3 months afterwards. I don't have to tell you what her reaction to that was. I think that was the only moment yesterday that really upset her - to the point of causing some crocodile tears! She loves our little angels but in the grand scheme of things - 3 months for a lifetime is a decent tradeoff, right?
Dr. Safah still has to finalize her evaluation and talk to Dr. Pallera to determine the best treatment plan, but what I just described is the initial plan for now! I hope to speak to both doctors by Monday so that we have a much better idea of what lies ahead, although I think I have a decent grasp on it so far. Dr. Safah didn't want to give us any false sense of hope but she thinks that if Elizabeth's tumors are sensitive to ESHAP then she has about a 60% chance of having a 5+ year remission with a really good chance of a cure! Having said that, that number goes down significantly if her tumors don't respond well to ESHAP. There are other options but ESHAP is a great regimen so we fell like she has a decent shot a getting a good response. Her itching has disappeared completely so that's a good thing. Dr. Safah also discussed with us that Hodgkin's is VERY sensitive to radiation so the tumors in her chest coming back so soon would be concerning IF they were included in the radiation field. If not, then there could be a chance that the lymphoma is just refractory and that more chemo will do the trick. When I looked at Elizabeth's scans, all areas that she had radiation, there is no sign of disease - it is confined to the chest and it appears to be away from the initial radiation field. I really am not sure what to think about all of this but I think that we will just wait to see what Dr. Safah and her team discover. She is having her radiologists review the scans and pathologists review the tissue slides to make sure that everything is confirmed from the initial diagnosis. She also stated that there is a chance that the lung involvement may be something other than lymphoma-related. I am not sure what the chance of that happening is but we haven't ruled it out yet. Fingers crossed that this cancer is strictly contained in the lymph system.
So, Dr. Safah really needed chest x-rays, blood work/tests, heart tests (ECHO, EKG), and lung tests (Pulmonary Function Test) done so that she could finalize her approach to treatment. Normally, this takes a while to schedule and is done over several days...well, not for us. She had everything done yesterday (and I am sure some strings were pulled for us that we are very thankful for). Her echo and EKG came back great (she has a strong heart - and we already knew that, right?!?). Her lung function tests came back normal so her chemo has apparently helped with the nodules in her lungs. We hope. Once all the blood work comes back combined with the radiologists and pathologists opinions, then I am sure that Dr. Safah and Dr. Pallera will hash out her treatment from this point forward. I can't wait to get some more clarification but so far, we feel very optimistic that she can be cured of this disease.
We made it back safely to Memphis after a very long stretch of 32 hours - 12 of which were in my truck. It was a mass overload of information but it was well worth our trip to see the facility and meet new doctors/people! For now, it looks like New Orleans will be a home away from home this summer - and that is a good thing for us because Danita and Grace both work and Tulane and will take extra-special care of her along with all of the great folks that we met yesterday. It was a blessing to be treated so well - and we can't possibly say thank you enough. Another benefit about Elizabeth being at Tulane is that our families are only an hour or so away. It will be much easier for her to always have someone by her side during this time being so close to our families. If the treatment was being done in Memphis (or Nashville - which is the closest fully-covered stem cell transplant center) then it would have been much more difficult to handle from a logistics standpoint. As we begin to travel down this new stretch of road in our lives, we can't help but be thankful that we have people who care so much about us at Tulane. It means so much to us and I know that she will be in great hands - and that is a comforting feeling.
To update everyone on how Elizabeth is doing...great! That is all that needs to be said really. She was up and out of bed on Sunday night (we took a mother's day trip to Kroger!!!) I'm a great husband - what can I say! Haha. Kidding. Anyway, the cytarabine didn't knock her down too bad and she is doing great. It's pretty amazing. She is back at work for the next week and a half. Then she will be off to Destin to enjoy a beach trip before the next chemo cycle. She deserves it and I am sure that she will have a blast! But to say that chemo will keep her down - it's just not possible with Elizabeth.
Thanks to all that have reached out to us during this difficult time in our lives. Your thoughts and prayers are appreciated. And as I told Elizabeth last night - what a story for her to share...beating cancer twice in 1 year. She makes me one very proud husband. Love her!
Thanks again everyone,
Scott
Our day at Tulane (yesterday) started early and we were treated as well as any persons could be treated. We met with Barry Marshall (VP of the transplant division) initially before meeting the nurses and doctor. Needless to say, my aunt Danita had the red-carpet rolled out for us thus making this very difficult time seem a little less stressful. We met with Dr. Safah around 9:00 and she went over everything from initial diagnosis to relapse diagnosis. We spent around 45 minutes discussing things with her - everything from the treatment options to her initial thoughts on our future plans. She - like any other doctor would - wants to become Elizabeth's primary care oncologist for now. She feels like she would be best served to have future chemo treatments and the stem cell transplant done at Tulane. After a little hesitation, we began to realize exactly why that was the case. She explained the stem cell treatment plan to us and specifically, the harvest procedure. During her next chemo cycle, Elizabeth will be given a Neupogen shot (which is similar to Neulasta). This shot is given every day in order to boost blood cell production - specifically white blood cells. Her blood counts will be monitored and the stem cells will need to be harvested at the right time, hence Dr. Safah wanting treatment to be performed in New Orleans under her supervision. It apparently takes 5-7 days after finishing the chemo regimen to get the blood counts to a level that is necessary for harvest. Typically, blood stem cells are located in the bone marrow. As I understand it, the chemo destroying the blood cells will be offset by the Neupogen injections. During the time that the new stem cells are actually in the blood versus the marrow, they will need to be harvested. Basically, we want to get the stem cells before the move back into the bone marrow so we have just a limited window to do so.
It looks like Elizabeth will be in New Orleans from June 4th-mid-June and will return to Memphis to have a scan done to ensure that the ESHAP regimen is working (shrinking her tumors). If she has a sensitive disease (i.e the tumors are shrinking) then the high-dose chemotherapy with stem cell transplant will follow. If all goes well, then Elizabeth will return to New Orleans in early July and will receive her high-dose chemo in the hospital (this regimen is BEAM). It is supposed to be pretty devastating but with the way she has handled ESHAP, who knows! She has just shrugged that off like it was no big deal. Heck, she is at work today - doing what she loves! I am constantly amazed at her strength, especially given the stories I had heard about ESHAP. It's pretty remarkable. Moving on...the high dose therapy will require about a 17-20 hospitalization - 7 days of chemo followed by the actual transplant. Once her blood counts come back to appropriate levels, then she will be free to go home. This is the good news. Bad news is that she really needs to stay away from the kids for the 3 months afterwards. I don't have to tell you what her reaction to that was. I think that was the only moment yesterday that really upset her - to the point of causing some crocodile tears! She loves our little angels but in the grand scheme of things - 3 months for a lifetime is a decent tradeoff, right?
Dr. Safah still has to finalize her evaluation and talk to Dr. Pallera to determine the best treatment plan, but what I just described is the initial plan for now! I hope to speak to both doctors by Monday so that we have a much better idea of what lies ahead, although I think I have a decent grasp on it so far. Dr. Safah didn't want to give us any false sense of hope but she thinks that if Elizabeth's tumors are sensitive to ESHAP then she has about a 60% chance of having a 5+ year remission with a really good chance of a cure! Having said that, that number goes down significantly if her tumors don't respond well to ESHAP. There are other options but ESHAP is a great regimen so we fell like she has a decent shot a getting a good response. Her itching has disappeared completely so that's a good thing. Dr. Safah also discussed with us that Hodgkin's is VERY sensitive to radiation so the tumors in her chest coming back so soon would be concerning IF they were included in the radiation field. If not, then there could be a chance that the lymphoma is just refractory and that more chemo will do the trick. When I looked at Elizabeth's scans, all areas that she had radiation, there is no sign of disease - it is confined to the chest and it appears to be away from the initial radiation field. I really am not sure what to think about all of this but I think that we will just wait to see what Dr. Safah and her team discover. She is having her radiologists review the scans and pathologists review the tissue slides to make sure that everything is confirmed from the initial diagnosis. She also stated that there is a chance that the lung involvement may be something other than lymphoma-related. I am not sure what the chance of that happening is but we haven't ruled it out yet. Fingers crossed that this cancer is strictly contained in the lymph system.
So, Dr. Safah really needed chest x-rays, blood work/tests, heart tests (ECHO, EKG), and lung tests (Pulmonary Function Test) done so that she could finalize her approach to treatment. Normally, this takes a while to schedule and is done over several days...well, not for us. She had everything done yesterday (and I am sure some strings were pulled for us that we are very thankful for). Her echo and EKG came back great (she has a strong heart - and we already knew that, right?!?). Her lung function tests came back normal so her chemo has apparently helped with the nodules in her lungs. We hope. Once all the blood work comes back combined with the radiologists and pathologists opinions, then I am sure that Dr. Safah and Dr. Pallera will hash out her treatment from this point forward. I can't wait to get some more clarification but so far, we feel very optimistic that she can be cured of this disease.
We made it back safely to Memphis after a very long stretch of 32 hours - 12 of which were in my truck. It was a mass overload of information but it was well worth our trip to see the facility and meet new doctors/people! For now, it looks like New Orleans will be a home away from home this summer - and that is a good thing for us because Danita and Grace both work and Tulane and will take extra-special care of her along with all of the great folks that we met yesterday. It was a blessing to be treated so well - and we can't possibly say thank you enough. Another benefit about Elizabeth being at Tulane is that our families are only an hour or so away. It will be much easier for her to always have someone by her side during this time being so close to our families. If the treatment was being done in Memphis (or Nashville - which is the closest fully-covered stem cell transplant center) then it would have been much more difficult to handle from a logistics standpoint. As we begin to travel down this new stretch of road in our lives, we can't help but be thankful that we have people who care so much about us at Tulane. It means so much to us and I know that she will be in great hands - and that is a comforting feeling.
To update everyone on how Elizabeth is doing...great! That is all that needs to be said really. She was up and out of bed on Sunday night (we took a mother's day trip to Kroger!!!) I'm a great husband - what can I say! Haha. Kidding. Anyway, the cytarabine didn't knock her down too bad and she is doing great. It's pretty amazing. She is back at work for the next week and a half. Then she will be off to Destin to enjoy a beach trip before the next chemo cycle. She deserves it and I am sure that she will have a blast! But to say that chemo will keep her down - it's just not possible with Elizabeth.
Thanks to all that have reached out to us during this difficult time in our lives. Your thoughts and prayers are appreciated. And as I told Elizabeth last night - what a story for her to share...beating cancer twice in 1 year. She makes me one very proud husband. Love her!
Thanks again everyone,
Scott
Friday, May 11, 2012
Lots going on!
Well, it's only been a couple of days since my lost post but it seems like a lot has happened since then - maybe it was just a lot happening today.
Let's start with what everyone wants to know - Elizabeth is doing extremely well so far with this regimen. The staff at West Clinic has kept her feeling well with the right anti-nausea meds. The cisplatin was supposed to be really hard on her in terms of nausea but so far, so good. Today she was given her cytarabine and that drug is supposed to make her really fatigued - but we'll see. She has been a trooper so far so I expect that it will be less than most who have to go through this. Annnddd....the best news of the day? She got to leave her bag of cisplatin at the clinic and not have to drag it around any more. Ha.
I wasn't able to go to the clinic with her today so my sister, Grace, stepped in. She saw Dr. Pallera this morning and he seemed to be much more upbeat than last week. Maybe he was just down because he hates to see his patients have something like this happen to them. I can understand that. I'd feel the same way. It has to be a little depressing to see someone sail through treatment and then relapse so quickly - especially someone that is only 30 years old. He told Elizabeth that he really thinks that her odds of a cure are much higher than normal because she has so many good things going for her (I think he knows how awesome she is so he's making an adjustment!!!). Interestingly, he seemed upset at the thought of her having her stem cell transplant at Baptist so he asked if we could see about getting it done somewhere else - somewhere that was covered by our insurance. So this is where the fun began today. Whew. It was like a whirlwind of things all happening this afternoon.
Yesterday, I sent Elizabeth's records to Tulane so that the oncology department could review them. When Dr. Pallera heard this news he seemed excited about the possibility of her doing her transplant there. So I called my aunt Danita (who for those that don't know, is the Chief Nursing Officer at Tulane Hospital). I asked her if she could see if our insurance would be accepted there. She made the calls and got back to me with some great news...we would be fully covered to do the transplant at Tulane. It never hurts to know people! Haha. We are excited because not only will she be close to family but since she is the niece of an executive then we will be well-taken care of - and I am NOT suggesting that Tulane treats anyone with less than wonderful service - it just never hurts to have a family member there taking care of you. Grace also works at Tulane so I know Elizabeth will be WELL-taken care of while down there. Dr. Safah at Tulane wants to see her next week. She said that she would be available for a appointment on Wednesday so we plan on seeing her in New Orleans on Wednesday morning. Seem like a lot? I agree. One minute, the transplant was going to be done in Memphis - the next minute we are headed "home" to see a new doctor - a fantastic doctor and set-up her stem cell transplant. It's been quite a day.
Other good news - Elizabeth will have a scan done on May 28th to see how the ESHAP regimen did on it's first attempt! If all goes well with the scan, she will start her second round the next week. She also gets to go on her girls' beach trip as scheduled - something she is VERY excited about. I'm so pumped that Dr. Pallera gave her the "ok" to go on the trip. She deserves it!
So all in all - a hectic but exciting day! We are thrilled about how well she has done so far and we know that this is a winnable battle. Well, we always knew that - after all, we are dealing with Elizabeth! She's got this!
I know that I've said it before but I want to repeat it - hug and kiss your loved ones. Don't let the trivial things in life get you upset because in the grand scheme of things it just doesn't matter all that much. Family and friends mean everything and we are so blessed to have wonderful people in both categories! And never forget that with God, all things are possible! Keep those prayers comin' peeps!
One last thing....GEAUX GRIZZ! Game 7 baby!
Love y'all,
Scott
Let's start with what everyone wants to know - Elizabeth is doing extremely well so far with this regimen. The staff at West Clinic has kept her feeling well with the right anti-nausea meds. The cisplatin was supposed to be really hard on her in terms of nausea but so far, so good. Today she was given her cytarabine and that drug is supposed to make her really fatigued - but we'll see. She has been a trooper so far so I expect that it will be less than most who have to go through this. Annnddd....the best news of the day? She got to leave her bag of cisplatin at the clinic and not have to drag it around any more. Ha.
I wasn't able to go to the clinic with her today so my sister, Grace, stepped in. She saw Dr. Pallera this morning and he seemed to be much more upbeat than last week. Maybe he was just down because he hates to see his patients have something like this happen to them. I can understand that. I'd feel the same way. It has to be a little depressing to see someone sail through treatment and then relapse so quickly - especially someone that is only 30 years old. He told Elizabeth that he really thinks that her odds of a cure are much higher than normal because she has so many good things going for her (I think he knows how awesome she is so he's making an adjustment!!!). Interestingly, he seemed upset at the thought of her having her stem cell transplant at Baptist so he asked if we could see about getting it done somewhere else - somewhere that was covered by our insurance. So this is where the fun began today. Whew. It was like a whirlwind of things all happening this afternoon.
Yesterday, I sent Elizabeth's records to Tulane so that the oncology department could review them. When Dr. Pallera heard this news he seemed excited about the possibility of her doing her transplant there. So I called my aunt Danita (who for those that don't know, is the Chief Nursing Officer at Tulane Hospital). I asked her if she could see if our insurance would be accepted there. She made the calls and got back to me with some great news...we would be fully covered to do the transplant at Tulane. It never hurts to know people! Haha. We are excited because not only will she be close to family but since she is the niece of an executive then we will be well-taken care of - and I am NOT suggesting that Tulane treats anyone with less than wonderful service - it just never hurts to have a family member there taking care of you. Grace also works at Tulane so I know Elizabeth will be WELL-taken care of while down there. Dr. Safah at Tulane wants to see her next week. She said that she would be available for a appointment on Wednesday so we plan on seeing her in New Orleans on Wednesday morning. Seem like a lot? I agree. One minute, the transplant was going to be done in Memphis - the next minute we are headed "home" to see a new doctor - a fantastic doctor and set-up her stem cell transplant. It's been quite a day.
Other good news - Elizabeth will have a scan done on May 28th to see how the ESHAP regimen did on it's first attempt! If all goes well with the scan, she will start her second round the next week. She also gets to go on her girls' beach trip as scheduled - something she is VERY excited about. I'm so pumped that Dr. Pallera gave her the "ok" to go on the trip. She deserves it!
So all in all - a hectic but exciting day! We are thrilled about how well she has done so far and we know that this is a winnable battle. Well, we always knew that - after all, we are dealing with Elizabeth! She's got this!
I know that I've said it before but I want to repeat it - hug and kiss your loved ones. Don't let the trivial things in life get you upset because in the grand scheme of things it just doesn't matter all that much. Family and friends mean everything and we are so blessed to have wonderful people in both categories! And never forget that with God, all things are possible! Keep those prayers comin' peeps!
One last thing....GEAUX GRIZZ! Game 7 baby!
Love y'all,
Scott
Wednesday, May 9, 2012
Ahhh...not exactly what we had hoped for - Relapse!
It's been forever since I wrote on the blog...mainly letting Elizabeth take over. Everything seemed to be falling in place for us...she was in remission, we began building our house, sold our other house, Anna and Lyla were filling our hearts with joy, etc. You name it...it felt like things were going just right. Then...
April 30th was just a normal Monday...well, except for this Monday was finally the day that Elizabeth was to get her first post-treatment PET scan. I told her that I would see her that evening after work - but to call me after the scan just to see how things went. Just like September 17th, 2011 - I'll never forget the call. Elizabeth called and said that Monica (Dr. Pallera's nurse) had called and they wanted her to come back to West Clinic. There were some suspicious spots found on her lungs and chest. Wait...what? Seriously? This couldn't be happening. Not now. Not right now. Things were...were...were just fine yesterday. Two hours ago. After thinking about it and how rare it would be for a relapse so quickly, I immediately thought infection or inflammation. It had to be that. So, we made our way back to West Clinic for a 2:30 appointment to see Dr. Pallera. He came in the room and looked distraught. This didn't have a good vibe to it. I knew something was seriously wrong. What did he see that was so concerning? He told us that there were several concerning spots that they found on her PET scan - things that were not there just 4 short months ago and only 12 weeks removed from radiation. What is it?
He went on to tell us that there were 3-4 spots that were enlarged with loads of activity in her lungs that gave him pause. He wanted to do a needle biopsy on Wednesday and see us that Friday. If his (and our) fears were confirmed, then treatment would need to start soon. But Doc, couldn't it be something else, I asked? It could be but not likely. His gut told him it was recurrent lymphoma - he just needed to find out if it was Hodgkin's again. Obviously this was devastating news. We had started the day just like any other day and then BAM...back to reality. Cancer has a way of doing that. Needless to say, we scheduled the biopsy and had it done on Wednesday. We talked to Dr. Hodgkiss, her radiation doc at West and he was fantastic. Can't wait to talk to him again soon. Upbeat and very positive about her treatment possibilities. Elizabeth was a little sore from the biopsy for the rest of the week. It was uncomfortable and because her tore into her enlarged lymph node, I'm sure it was inflamed making her newfound shortness of breath even worse. Of course, this would all happen as we were moving...supposed to be out of our house by Sunday, May 6th. And then....
Friday - May 4th. Another day that was seared into my memory forever. We woke up and got Anna off to school. We were both so anxious to find out what was going on that Xanax barely took the edge off. I asked my boss not to drug test me for a while...I might be taking some anti-anxiety meds. In the grand scheme of things, we knew what the results said. We prayed our tails off but I think we both had that sick feeling about what was ahead...so at least we were prepared for the worst news and hoping for the best. Dr. Pallera came in and told us the news...her Hodgkin's lymphoma was back. It was apparently sad that it didn't get to wreak enough havoc so it came back for seconds. Dr. Pallera went through the possible treatments and told us that the cure rate for someone with recurrent lymphoma was cut in half from her original diagnosis. Huh? 30-45% from 90+%? Oh man. Well, I had already schooled Elizabeth on the odds. I hadn't stopped reading about it since Monday. I mean...obsessed. I looked into every chemo regimen out there. What gave Elizabeth the best shot at outliving me? What would be best for a potential "cure" - not just a life extender? It came down to a few treatments, although it's a mixed bag in terms of results. ESHAP seems to be the best option...and Dr. Pallera said that's what he wanted to give her. (E) etoposide, (S) solumedrol (steroid), (HA) high-dose Ara-C (or cytarabine), and (P) platinum (cisplatin). That's our new acronym...our new hope. Is this the right drug? Ya damn right it is! I know it is!
Dr. Pallera explained that she would get at least 2 doses of ESHAP. It's given in a 5-day regimen with 23 days off after infusion. Then it starts all over again. Etoposide and cispatin are given with steroids on days 1-4 and cytarabine is given on day 5. These drugs are rough...and have a variety of side effects. Of course, Elizabeth will likely lose her hair again starting on week 3 or so. Looks like a "cool" do is in order for the summer. She looks great bald so that's not a big deal. So what's the plan? After 2 doses of ESHAP a scan will be done. If - and when - her PET scan shows her to be in remission again after ESHAP then she will undergo a high dose chemotherapy with an autologous stem cell transplant. The high-dose chemo is called BEAM - B - (BiCNU or carmustine) - E - etoposide - A - arabinoside - M - melphalan. Man, there are some serious acronyms in the cancer world. Ha. Hard to keep up with them all. For instance, the 5 treatments most common for recurrent or refractory lymphoma??? ESHAP, DHAP, ICE, IGEV, or SGN-35...C'MON MAN!!! Just a simple name won't do for us science nerds. Anywho, after the BEAM, she'll have a stem cell transplant. Sometime between her 2nd ESHAP and BEAM, they will harvest her blood stem cells and freeze them. The BEAM treatment will take her WAAAYYY down...and then they will re-inject her stem cells back into her blood and bring her back to health. It's a rough way to do things but it gives her the best shot at long-term remission. A recent study from MD Anderson's stated that if a patient receives a clean PET scan before there transplant, then there was a 70% chance of a 3+ year remission vs. 24% if there wasn't a clean PET scan before the stem cell transplant. We'll take option number one please! Lol.
I've researched this crap to death...it's what I do. We asked for a 2nd opinion and the oncology department at Tulane agreed with her treatment. That makes us feel better. It's not that we don't trust Dr. Pallera - we trust him completely - it's just that it's nice to have others confirm something for you.
Soooo...it's back to blogging again. Not because I loved it (I did like it though) - but because so many people love my Elizabeth that I feel like I need to keep them updated. She is my world and I'd do whatever it takes. I wish that this disease had been bestowed upon me because she doesn't deserve it but there is really nothing that I can say or do to change the hand that we've been dealt. We have to just keep on pushing...fighting this nasty, no-good, rotten disease. I know what the numbers say about a cure...but they don't know Elizabeth. This disease doesn't stand a chance. It may have come back thinking it was going to take her down but it's only pissed her off and she decided that this time...no holds barred. It's on! We are now 3 days into treatment and she is feeling pretty good. Nausea has been minimal so far and she has felt good enough to get out a little. I'm so proud of her - so damn proud. She is a trooper, a fighter, a warrior - whatever word you can think of to describe a true bad-ass! And because she reads this...I want to let her know that I will be here every step of the way...through hell and back! She inspires me to be a better person and I hope that one day I can be half the person she is! I love you baby and will move mountains to bring you back to health! We WILL beat this - we WILL win - we WILL have the last laugh! Why? Because you can't measure a person's will - and your will is stronger that anyone I know!
Fight on chick! We're in this together!
Scott
P.S - We have been overwhelmed by the support. We have the absolute BEST friends and family in the world! You guys make us feel loved and we can never do enough to re-pay you all for everything that you have done. It makes us step back and realize that we are lucky...not exactly what you'd expect from someone dealing with cancer - but we are lucky because all of you are in our lives! Much love friends, much love family! ALL IN!
April 30th was just a normal Monday...well, except for this Monday was finally the day that Elizabeth was to get her first post-treatment PET scan. I told her that I would see her that evening after work - but to call me after the scan just to see how things went. Just like September 17th, 2011 - I'll never forget the call. Elizabeth called and said that Monica (Dr. Pallera's nurse) had called and they wanted her to come back to West Clinic. There were some suspicious spots found on her lungs and chest. Wait...what? Seriously? This couldn't be happening. Not now. Not right now. Things were...were...were just fine yesterday. Two hours ago. After thinking about it and how rare it would be for a relapse so quickly, I immediately thought infection or inflammation. It had to be that. So, we made our way back to West Clinic for a 2:30 appointment to see Dr. Pallera. He came in the room and looked distraught. This didn't have a good vibe to it. I knew something was seriously wrong. What did he see that was so concerning? He told us that there were several concerning spots that they found on her PET scan - things that were not there just 4 short months ago and only 12 weeks removed from radiation. What is it?
He went on to tell us that there were 3-4 spots that were enlarged with loads of activity in her lungs that gave him pause. He wanted to do a needle biopsy on Wednesday and see us that Friday. If his (and our) fears were confirmed, then treatment would need to start soon. But Doc, couldn't it be something else, I asked? It could be but not likely. His gut told him it was recurrent lymphoma - he just needed to find out if it was Hodgkin's again. Obviously this was devastating news. We had started the day just like any other day and then BAM...back to reality. Cancer has a way of doing that. Needless to say, we scheduled the biopsy and had it done on Wednesday. We talked to Dr. Hodgkiss, her radiation doc at West and he was fantastic. Can't wait to talk to him again soon. Upbeat and very positive about her treatment possibilities. Elizabeth was a little sore from the biopsy for the rest of the week. It was uncomfortable and because her tore into her enlarged lymph node, I'm sure it was inflamed making her newfound shortness of breath even worse. Of course, this would all happen as we were moving...supposed to be out of our house by Sunday, May 6th. And then....
Friday - May 4th. Another day that was seared into my memory forever. We woke up and got Anna off to school. We were both so anxious to find out what was going on that Xanax barely took the edge off. I asked my boss not to drug test me for a while...I might be taking some anti-anxiety meds. In the grand scheme of things, we knew what the results said. We prayed our tails off but I think we both had that sick feeling about what was ahead...so at least we were prepared for the worst news and hoping for the best. Dr. Pallera came in and told us the news...her Hodgkin's lymphoma was back. It was apparently sad that it didn't get to wreak enough havoc so it came back for seconds. Dr. Pallera went through the possible treatments and told us that the cure rate for someone with recurrent lymphoma was cut in half from her original diagnosis. Huh? 30-45% from 90+%? Oh man. Well, I had already schooled Elizabeth on the odds. I hadn't stopped reading about it since Monday. I mean...obsessed. I looked into every chemo regimen out there. What gave Elizabeth the best shot at outliving me? What would be best for a potential "cure" - not just a life extender? It came down to a few treatments, although it's a mixed bag in terms of results. ESHAP seems to be the best option...and Dr. Pallera said that's what he wanted to give her. (E) etoposide, (S) solumedrol (steroid), (HA) high-dose Ara-C (or cytarabine), and (P) platinum (cisplatin). That's our new acronym...our new hope. Is this the right drug? Ya damn right it is! I know it is!
Dr. Pallera explained that she would get at least 2 doses of ESHAP. It's given in a 5-day regimen with 23 days off after infusion. Then it starts all over again. Etoposide and cispatin are given with steroids on days 1-4 and cytarabine is given on day 5. These drugs are rough...and have a variety of side effects. Of course, Elizabeth will likely lose her hair again starting on week 3 or so. Looks like a "cool" do is in order for the summer. She looks great bald so that's not a big deal. So what's the plan? After 2 doses of ESHAP a scan will be done. If - and when - her PET scan shows her to be in remission again after ESHAP then she will undergo a high dose chemotherapy with an autologous stem cell transplant. The high-dose chemo is called BEAM - B - (BiCNU or carmustine) - E - etoposide - A - arabinoside - M - melphalan. Man, there are some serious acronyms in the cancer world. Ha. Hard to keep up with them all. For instance, the 5 treatments most common for recurrent or refractory lymphoma??? ESHAP, DHAP, ICE, IGEV, or SGN-35...C'MON MAN!!! Just a simple name won't do for us science nerds. Anywho, after the BEAM, she'll have a stem cell transplant. Sometime between her 2nd ESHAP and BEAM, they will harvest her blood stem cells and freeze them. The BEAM treatment will take her WAAAYYY down...and then they will re-inject her stem cells back into her blood and bring her back to health. It's a rough way to do things but it gives her the best shot at long-term remission. A recent study from MD Anderson's stated that if a patient receives a clean PET scan before there transplant, then there was a 70% chance of a 3+ year remission vs. 24% if there wasn't a clean PET scan before the stem cell transplant. We'll take option number one please! Lol.
I've researched this crap to death...it's what I do. We asked for a 2nd opinion and the oncology department at Tulane agreed with her treatment. That makes us feel better. It's not that we don't trust Dr. Pallera - we trust him completely - it's just that it's nice to have others confirm something for you.
Soooo...it's back to blogging again. Not because I loved it (I did like it though) - but because so many people love my Elizabeth that I feel like I need to keep them updated. She is my world and I'd do whatever it takes. I wish that this disease had been bestowed upon me because she doesn't deserve it but there is really nothing that I can say or do to change the hand that we've been dealt. We have to just keep on pushing...fighting this nasty, no-good, rotten disease. I know what the numbers say about a cure...but they don't know Elizabeth. This disease doesn't stand a chance. It may have come back thinking it was going to take her down but it's only pissed her off and she decided that this time...no holds barred. It's on! We are now 3 days into treatment and she is feeling pretty good. Nausea has been minimal so far and she has felt good enough to get out a little. I'm so proud of her - so damn proud. She is a trooper, a fighter, a warrior - whatever word you can think of to describe a true bad-ass! And because she reads this...I want to let her know that I will be here every step of the way...through hell and back! She inspires me to be a better person and I hope that one day I can be half the person she is! I love you baby and will move mountains to bring you back to health! We WILL beat this - we WILL win - we WILL have the last laugh! Why? Because you can't measure a person's will - and your will is stronger that anyone I know!
Fight on chick! We're in this together!
Scott
P.S - We have been overwhelmed by the support. We have the absolute BEST friends and family in the world! You guys make us feel loved and we can never do enough to re-pay you all for everything that you have done. It makes us step back and realize that we are lucky...not exactly what you'd expect from someone dealing with cancer - but we are lucky because all of you are in our lives! Much love friends, much love family! ALL IN!
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