It's been a while...

Let me start by saying that I am sorry that I haven't posted in so long. Life has been it's now-typical rollercoaster self for the last 4-6 weeks. Needless to say, things have gone from high to low and back again.

Last we left off Elizabeth had just finished up her 2nd cycle of DA-EPOCH-R. She left the hospital on a Tuesday I believe and went in for her Neulasta shot on Wednesday. That Friday things got progressively worse. She began to have some serious shortness of breath and she was asked to come back and get a unit of blood to help with some other issues. When she returned to the clinic that Friday afternoon, her temperature had spiked and Dr. Safah wanted her admitted immediately. Little did we know what would be next. She had a CT scan that Friday that showed a complete obstruction of the left left - essentially the left lung had collapsed. Her pulse was 150-160 and her temp was dangerously high, especially for someone whose white blood cell count was essentially zero. The were going to do a thoracentesis (a fluid tap) on her left lung to remove some fluid that was showing up on x-ray. The problem with this whole ordeal is that it happened on a weekend and her blood numbers were plunging from the chemo. They ordered two units of platelets (and of course they had to be shipped in from Hammond because Tulane didn't have any to match). She then had to wait all day on Saturday and Sunday with severe shortness of breath so that they could infuse the platelets. It was extremely difficult being in the room but not being able to offer any help to her other than support. I felt terrible watching her suffer so much.

On Sunday evening, after waiting all day for the platelets, the pulmonary fellow told us that they were going to hold off on the procedure until in the morning and might cancel altogether and just do a bronchoscopy. Ok then. Now Monday comes around and we demand that they do something even though her platelet numbers were a little low even after the infusion. We knew the risks but she needed to be able to freaking breathe. Long story short - they did a bronchoscopy (went into her lungs with a camera and other instruments through a tube) and the thoracentesis after all. They collected tissue from a large mass that was blocking her left upper airway. They also removed almost one liter of fluid (over 2 pounds) from around her lung. Needless to say, after the procedure she was breathing much better. The pulmonary doc told us that he thought the mass was necrotic tissue from a dead tumor. Well, this was good news. Now we just had to wait on the pathology results.

The pathology results came back on Wednesday - two days after the procedure. Unfortunately, her breathing didn't stay great for long and she was getting more fluid build-up around her lungs again. Certainly we were nervous but the results of the pathology report said that the mass was just necrotic tissue - no active cancer. Awesome news...now we just need to get it out of the way so she can breath. Maybe the DA-EPOCH-R was kicking ass and taking names. She was also negative for all fungal and bacterial infections so we didn't have to worry about that as well.

They scheduled another procedure for that Friday to remove the mass. More fun. She has now spent over 10 of the past 14 days in the hospital. Not a happy camper. Anyway, the pulmonary doctor and a cardiothoracic surgeon performed another bronchoscopy to remove the mass. They quickly got rid of the necrotic mass but the lung did not re-inflate like they had hoped. This was certainly bad news. They continued to probe around and found some suspicious spots in her lung - both the upper and lower lobes. They told me that these lesions bled when they took tissue samples from them and they had active blood supplies. These are not good things as active cancerous tumors have a vascular supply. Dr. Safah called me as I was headed to the Memphis airport to fly back to New Orleans. Needless to say she did not sound very encouraging. However, she did have a plan and that is always good to know. She told me that she consulted with all the doctors involved and they looked at the x-rays, CT scans, and discussed the procedure. They all believed that the cancer was still there and active. Great. Another failed chemo regimen. We could only get 2-3 days of good news before the reality of the situation came crashing back into our front yard. Bummer.

We hung out all weekend at Tulane and Elizabeth was struggling to get out of bed because of the chest tube and soreness from the procedure. But as always, she fought like crazy to keep active and get better. I ended up leaving before the results from the pathology lab came back that next Wednesday - a confirmation that the cancer was still there in both the upper and lower portions of her left lung. Such a disappointment because the EPOCH regimen had nuked most of the cancer. Tumors were very minimal now after 2 cycles of this stuff - it had really done a number on them. What next? Well, we were now faced with the prospect of turning to the drug we wanted to keep for a rainy day. Guess what - it was "raining" now! Elizabeth received her first dose of the new wonder drug, brentuximab vedotin, that Thursday. Its brand name is Adcetris and was studied as SGN-35. It has been remarkable so we needed to try it.

She was released from the hospital after getting her first dose. This was in early October (the 4th). All the while, I was back in Memphis doing what I do - working during the week and planning a weekend trip back to Louisiana. 5 months of this stuff was beginning to take a toll on me. It's hard spending voer 12 hours every weekend driving - and then coming back to an empty apartment. But if I had to do it all over again, I would. Whatever it takes to get her well is what will happen. We had to sell the house that we built in Collierville. It was extremely difficult - more for me than for her. She wanted to make sure that we would be fine without her working for a long time and we decided it was best to sell. Our builder had another house he had just finished and we decided to buy it. Glad I did because the best thing happened about 10 days ago - my family moved back to Memphis. Dr. Safah gave Elizabeth the ok to come back home. I have been on cloud nine since. My family is whole - if even for only a few months before her stem cell transplant.

She received her 2nd dose of brentuximab last week (10/25) and has done well so far. Anna had strep throat when she got back up here and Elizabeth got a sinus infection but both took some antibiotics and are all cleared up now. Elizabeth has been nothing short of amazing so far - walking the stairs all of the time and running some errands, taking care of the girls, etc. She has been breathing much better and her pain is starting to subside. Knock on wood - maybe this drug is working. We can hope, can't we?!?

Dr. Safah's nurse, Melissa, also delivered wonderful news last week...they have identified a perfect match for Elizabeth's stem cell transplant. It is a young female donor and so far, she is willing to donate. They got in touch with her and did a more extensive tissue typing and confirmed that she is indeed a 10/10 match. Now we just need to beat this cancer's ass and get her to transplant. If I've learned anything from this incredible woman the past 14 months it's that she will NOT take no for an answer. She will win this fight. I still can't believe that is has been over a year since we started this journey and we still have a very long road ahead. But I am confident that we will navigate it and come out of the dark tunnel at some point in the very near future.

God bless you all and thank you for your continued support and prayers. Love always,

Scott

365 days and counting...

Hello everyone - it's time for another installment of this blog! This one has a little significance - it's the one year anniversary of Elizabeth's diagnosis. I'll never forget that moment when I found out - it was immediately after kickoff of the Tennessee/Florida football game. It seems like it's been 20 years since that day, unfortunately. So many ups, so many downs, and so many in-betweens! One things has remained a constant and that is Elizabeth is fighting her ass off and is such an inspiration. What a woman!

She is currently at Tulane finishing up her 2nd cycle of DA-EPOCH-R. I hate to read too much into things but she has had considerable changes that make me hopeful - maybe more cautiously optimistic. Since she switched from mini-BEAM to this new regimen, the pain in her left ribs/lungs has subsided to nearly non-existant. She had some fluid build-up in her right lung after the last cycle of chemo (a few days before Labor Day) but that has gotten much better. Dr. Safah told us that there is a chance that the fluid being in her lung was due to the tumor necrosing (or dying). Man, that would be outstanding news. We are extremely hopeful that this is what is going on. Having said that - it could also be the lymphoma acting up again. We won't really know until the next scan takes place. A month ago, Elizabeth was complaining that her chest was tightening up and it felt like a belt was strapped around her chest. This isn't the case anymore. She is having no such trouble right now. Again, positive news but we have to take this with a grain of salt until we get the next scan done. There are explanations for each of these things causing less trouble than they were without the cancer shrinking or going away but we have to stay positive that this regimen is doing it's job.

I won't take too long on the details here but cycle 2 ends tomorrow. Dr. Safah wants to do her next PET/CT scan next Wednesday to assess the situation. We thought about doing it one week later but Dr. Safah wants us to have time to go to NIH in Bethesda, MD and see Drs. Wilson and Dunleavy if this scan doesn't turn out good. However, if the scan shows what we are hopeful of, then we will either continue to do the DA-EPOCH-R for another cycle or go to allogenic (donor) stem cell transplant. I think that the auto stem cell transplant is now off the table based on all the chemo that she has had so far. The odds of the auto working are significantly less then they were a few months ago. I have said from the beginning that the allo gives her the best chance at a cure but we wanted to save it in case the auto didn't work. However, we are now at a point that the allo will be our best chance to rid her of this disease. We are still very hopeful that this will all be over soon and she will be cured of this persistent, crappy disease. She is a fighter, an inspiration, a role model, a wonderful wife, mother, and best friend. She can and she WILL win this fight.


We continue to say thank you all for the thoughts and prayers. I am attaching a flyer that Liz Callegan had made for us as she organized a blood drive for Elizabeth. Please donate at one of the centers if you can. We certainly appreciate it so very much. I will be in touch about a drive here in Memphis when LifeBlood gets back in touch with us.

Love y'all and God Bless,

Scott

Roller coaster...why yes, yes it is!

Last we left off, I spoke of Elizabeth moving to an antibody therapy - called brentixumab vedotin (SGN-35, brand name Adcedtris). So here's where the roller coaster ride picked back up! As it turns out, Elizabeth seems to have been misdiagnosed from the very beginning. Dr. Safah would not accept the fact that she had such a dramatic mixed response to ESHAP. So, she ordered the pathology to be re-read - and fortunately for us, the second pathology analysis came from a doctor that trained in Maryland at Johns Hopkins. He had seen Gray Zone Lymphoma (GZL) before - and that's what Elizabeth has. It's a rare cancer - probably less rare that it seems because it is apparently misdiagnosed a lot. Anyhow, it's a mixture of Diffuse Large B-Cell Lymphoma (DLBCL) and Classical Hodgkin's Lymphoma, typically Nodular Sclerosing. What was Elizabeth's original diagnosis? You guessed correctly - Nodular Sclerosing Hodgkin's Lymphoma. Unfortunately, it appears that she was GZL from the start. The histology was re-examined from her "relapse" back in April and it was confirmed that this was GZL as well. We are in the process of getting the original slides looked at again - the ones from September 2011.

 Once Dr. Safah figured out that she had GZL, she then ordered another PET/CT scan because the mini-BEAM regimen was not ideal for her type of lymphoma. She consulted with Dr. Dunleavy at the National Institutes of Health and National Cancer Institute. He told her that he recommended a regimen that NIH created - it's called Dose-Adjusted EPOCH-R. This regimen is primarily used for patients with DLBCL and GZL. Unfortunately, the data for someone using this regimen that has "relapsed" from GZL is rare - mainly because DA-EPOCH-R is used as front-line treatment. This regimen calls for a 5-day infusion of the following drugs: Rituxan, Etoposide, Vincristine, Adriamycin, Prednisone, and Cyclophosphamide. Rituxan is a monoclonal antibody specifically targeting CD20-expressing cells (which Elizabeth has on her tumors in her chest and lung). It has been one of the very best drugs to ever hit the cancer field and because she hasn't been exposed to it before, we feel really good about its chances of working. She has had etoposide before - in the ESHAP and mini-BEAM regimens. Vincristine is a chemical analog to the drug vinblastine, which she received in the ABVD regimen. She has also had Adriamycin in ABVD - the "Red Devil". This drug has a lifetime dosing limit that we will most definitely hit by cycle 7 so we need this damn regimen to work before then!!! Haha. Prednisone is a steroid - nothing to see here. Last but not least is the really fun drug - cyclophosphamide. It is a nitrogen mustard alkylating agent! Oooh fun! It was developed a long time ago - and is in the family of mustard gas agents used back in WWII. It disrupts DNA by crosslinking the DNA strands and causes programmed cell death. It also causes any number of two thousand side effects - ok, I'm kidding. But it is a toxic chemical. Oh who am I kidding here - all of these drugs are toxic and shouldn't be taken! But alas - here we are starting yet another chemo regimen. The beauty of this regimen is that it is given over 5 days - constantly, unlike the standard R-CHOP. The science behind this dosing schedule is that they feel it gives the drugs a better chance at hitting the cancer cells during their growth phase. Makes sense because cancer is just abnormal growth of human cells - kill them while they are rapidly dividing. The long-term data from DA-EPOCH-R is showing it to be a better treatment for DLBCL than the current standard R-CHOP. Hopefully this will play out well for us too! Dr. Dunleavy says that in his experience, GZL responds better to non-Hodgkin's treatment - good! Hopefully, she'll be a case-study that makes it's way to scientific articles and will save someone else's life one day! I know that she is going to be an example - a great example - for other's in her position.

 We feel like this regimen will work. We have finally gotten answers to why things happened the way that they did. Elizabeth might not have "relapsed" in the traditional sense. She may have just suppressed the non hodgkin's aspects of her cancer to a point where it took the 14-16 weeks off of chemo to come roaring back. Interestingly, this is something that was missed twice by West Clinic. I won't say much about it other than if you are EVER in a situation where cancer is possible based on biopsy results - get a second opinion on the pathology/histology so that the proper diagnosis is given and that specific disease is treated properly. We look back and are disappointed in West Clinic and Dr. Pallera - not because he isn't a good doctor - because he didn't ask "Why" like Dr. Safah did. It was the "why" that has saved her from more chemo that would have yielded the same results. We are very lucky to have caught this now because failing transplants lessens the chance at a cure - something we are still trying to achieve.

 Enough of the soapbox - Elizabeth is doing well. She finished her first cycle of DA-EPOCH-R last week - right after Hurricane Isaac hit. Told you this was a roller coaster ride, didn't I? I mean - how many people can say they got inpatient chemo while a hurricane hit? Sheesh! For the first time in nearly 3 months, she is feeling little to no pain in her left lung/rib cage area. This is where her largest mass is - about the size of a golf ball. No pain = Scott feels good about this regimen. Maybe we are killing this shit once and for all. She did get a little fluid build-up in her right lung and it made her uncomfortable for a couple of days this weekend. Her blood counts are also wiped out so she got a fever this weekend - but luckily we were able to avoid a trip to the ER as it stabilized and then went back down. Any type of infection could be fatal right now because her immune system is basically non-existant. She rebounded fairly well and is back to herself now (even though those counts are still 0). We had Anna's 6th birthday party on Sunday. Man, out little girl is growing up too fast. She is the love of my life along with her little terror of a sister, Lyla. I miss those little ones so much now that I am separated from them during the week. Oh well - whatever it takes to get Elizabeth healthy - that's what we'll do!

 I will try and write more soon. We have lots more to share. But the take home is this: We finally got the right diagnosis and are on a more tailored regimen. She feels 100% better in her left lung which is fantastic news! We are super-hopeful now - even if she still faces transplant in her future. We'll see as the next scan approaches! She will be back at Tulane in the hospital from Sept 13-19 or 20th getting cycle 2 of DA-EPOCH-R. She will get another PET/CT scan at the end of September and we'll see how it's working. Hopefully we'll be able to do more chemo (Yay! - I'm sure that is what Elizabeth is thinking!) and then proceed to curative transplant.

 Keep her in your thoughts and prayers! We certainly appreciate it!

 My best, Scott

On to SGN-35

Hi all, I apologize in advance for any typos...I'm doing this update from an iPad. Anywho, on to the 411. Elizabeth got a PET CT scan done on Wednesday of this past week. We then met with Dr. Safah on Thursday afternoon for the news. It seems as if Elizabeth had a really good response to chemo - in a lot of places. However, it appears as if a few of the tumors grew and a new lesion popped up in her lungs. I think this was halfway expected as we only did one round of chemo this time after the failed ESHAP regimen. On to the bad news though (bad and good I guess)...Elizabeth is now showing signs of having an extremely rare cancer. It is displaying elements of non Hodgkins lymphoma - specifically Diffuse Large B-cell Lymphoma. DLBCL is an aggressive cancer - but can be curable unlike many non-Hodgkins lymphomas. The goal of treatment is to kill cancer cells during their growth phase and because DLBCL grows fast, it's easier to kill. Unfortunately, there is also rapid growth which means we can't play around. Haha. The type of "gray zone lymphoma" (mixed HL and NHL) has only be recognized for a few years by the World Health Orginization. For many years it was black or white - Hodgkins or non-Hodgkins. Now doctors are realizing that it rare instances it can have elements of both. The bad news is that there is no consensus on how to treat these patients. The good news is we now have an explanation on why some of her tumors respond really well and some grow. Tumors express certain cell surface proteins that are specific for types of cancers. Her Hodgkins tumors appear to express CD15 and CD30 - however, there are certain areas where she is expressing CD20 - a sign that she has non-Hodgkins present. There are several treatment options because of this but the downside is that we don't know which treatment option will be best. It's almost a guessing game with no data acknowledging which option will work best for a mixed lymphoma. Soooo.... We are moving to the newly approved Adcetris. It was called SGN-35 during clinical trials and it's real name is brentixumab vedotin. This drug is nothing short of a miracle drug; however, it only induces a response in about 80% of patients. Having said that, it is a single agent therapy that is not really chemo...it doesn't have all the nasty side effects of traditional chemo. She can take this drug every three weeks for up to 16 treatments. The goal is still to reduce her tumors to get her to transplant - still an auto transplant too. We are still very hopeful for a cure...and we will try and hard as possible to kill this crap. Elizabeth feels great except for some pain in her left lung...where her largest tumor is residing. It seems to be pressing against her ribs and causing some moderate pain. Hopefully the SGN-35 will knock this thing down and get her some relief. She is not coughing anymore which is great. Her blood work looks great as well. Dr. Safah is very impressed with her physical well-being and so am I. I also think that her new diet is helping tremendously. She is still on the vegetarian diet with mostly raw and organic veggies and fruits. I truly believe that once we get her to transplant that this diet will keep in her remission. She starts the SGN-35 on Monday and will be done early afternoon. Hopefully she'll be able to come back to Memphis for a few days here and there so we'll keep everyone posted. We are trying organize a blood drive and do a benefit as well for the Lymphoma Society. I am also going to ask a favor of those willing to participate...we need to be prepared for a donor stem cell transplant in the future. It's called an allogeneic transplant - and she needs a donor. Her brother Darren is getting type tested on Tuesday and hopefully he'll be a perfect match. If you'd like to consider getting type-tested you can find out more info at bethematch.org - this is a big commitment so know that in advance. They will send you a test kit (swab) for free. You send it back in and they type test you. You then enter the national registry...for a stem cell or bone marrow transplant. If you a ever called to donate due to you being a match, it won't cost you anything. They bill the patient's insurance. There will be a little hassle included but you have the chance to save someone's life. It's obviously hoped that many will do it but it isn't to be taken lightly so we don't want ANYONE to feel pressured to do this. I just wanted everyone to be aware that we've come to a point in her treatment that it needs to be discussed. Let me know if you want more info...I know exactly how both procedures are done and can give you some info. I hope that everyone is doing well. We love all of you and can't say thanks enough for all the continued support and prayers. Keep 'me coming. God bless, Scott

One round of mini-BEAM down...

Hi all, I know it's been a couple of weeks since the last update - I can't begin to describe the ebbs and flows of the past two weeks. Hectic/chaotic/unsettling/nerve-wracking...all fit the past two weeks. When we left off, we were waiting on the results of the bronchoscopy and all. The pathology results from the bronch were non-diagnostic, i.e. didn't tell us squat. So, because of the fact that her coughing got so much better with the steroids, they decided to do an excisional lung biopsy. On Tuesday, July 17th, Elizabeth had her biopsy. The results came back the next day. I have mixed feelings about them...on one hand, we found out that she had the same form of Hodgkin's in her lungs. At least it hasn't mutated into some other form (trying to stay positive here folks!). On the other hand...it's still bloody cancer. Having said that, there was some concern from the doctor's that doing more chemo if she had severe pneumonitis would make things really bad on her lungs. Dr. Lasky (Chair of Pulmonary Dept at Tulane) ordered another pulmonary function test. Results? Not too good. Elizabeth has restrictive lung disease from the chemo and radiation. Dr. Lasky thinks that if we can resolve the lung issues due to lymphoma that she may have between 70-75% lung function but that's the best we can hope for - she's at 60% or so right now. Man...when things go bad it just seems to snowball. Both Dr. Lasky and Dr. Safah thought that they could manage the chemo and lung issues with the new mini-BEAM regimen somewhat safely and preserve her lungs as best as possible. Man, I hope so. Dr. Lasky says that Elizabeth can resume a halfway normal schedule and that the lungs issues won't get worse after all the treatment is over so that was a positive - he basically said the lungs would improve a little and the goal was to keep them stable for now. For sure! The only good news from the past couple of weeks was that Elizabeth was able to start mini-BEAM on Friday. It's a regimen that is typically used in higher dose form immediately prior to stem cell transplant; however, it had pretty good success as a salvage regimen for relapsed and refractory HL patients. The reason that it isn't used more often than it is has to do with the fact that it is hard to collect stem cells from patients that go through a few cycles of mini-BEAM. This wasn't a concern for us as Elizabeth has already collected her cells for transplant. I flew into New Orleans last Friday and spent the next 4 nights annoying Elizabeth. It's what I do best! ;-P She did like she always does and basically sailed through the treatments. There were some really funny moments from our time together and they usually occurred around the time that Elizabeth was getting Benadryl and pain meds. She would say some pretty funny things and we'd both share some laughs. It's weird - this whole experience. You find yourself wrapped up in potential outcomes of this whole ordeal and they drag you through so many emotions. These emotions can shift quickly or over time but it never seems to stay stable...high, low, and everywhere in between. It's the emotional roller coaster - but times two (or more!). All in all, she did really well after being in the hospital for 10 days total. She is a pretty special gal! She got to leave yesterday and go back to Prairieville and is spending time with her family and the girls right now. I know that being away from them was really hard on her - hell it's hard on me and I am not the one that has all the chemo getting pumped into my body. I miss my ladies terribly when I'm in Memphis but it's so nice to have the family support system be so close to her in New Orleans. And the staff at Tulane has gone above and beyond for her so we are so very grateful. Elizabeth will be headed back to Memphis early next week and will get to see our new house and all of the progress being made. It's really close to being ready. I can't wait for her to be able to see it. Also, Dr. Safah gave her the green light to stay here for 10 days so that she could be here for Anna's first day of 1st grade at Bailey Station. What a blessing - small things like this lift her spirits and makes her more determined to beat this illness. She can and WILL beat this - I just know it! She will head back to Tulane on Aug. 9th for a follow-up with Dr. Safah and get her schedule for the next round of chemo. After that week in the hospital (for the next round of mini-BEAM) then we will wait on pins and needles for the results of the next PET scan. If (God - please help us out on this one) this scan is good, then she will have her high-dose chemo plus stem cell transplant in September. Fingers and toes crossed while on bended knees praying our asses off! We need some good news...any good news! Hopefully, if everything goes according to plan, then she may be able to move back to Memphis sometime in late October or early November. What a glorious Thanksgiving and Christmas season that would be. Santa - I don't want a damn thing from you except for a healthy wife! Capice??? Good - glad we are on the same page! That's all for now. I will be in touch. Thanks again for all the thoughts and prayers. Love, Scott

Most recent update

Hi all - I will go more in depth later about things but here's a quick update. I know people want to know and I apologize about not writing sooner. Here's the 411: Elizabeth's PET/CT scans were sent to Tulane and the radiology group there saw noted response in the lung nodules; however, there was 1-2 spots that stayed the same size and the radiologist noted 1 new lesion - which is obviously not good given she had gone through two rounds of chemo. So we drove to Tulane this weekend to meet with Dr. Safah on Monday. She was concerned about the new lesion more so than anything else. Having said that, Elizabeth was running a mild fever and her heart rate was fairly high. She's been quite fatigued the last few days so we weren't sure exactly what was wrong but the thought of an infection had crossed my mind. Dr. Safah wanted to know exactly what was going on in the chest so she sent Elizabeth to meet with Dr. Lasky, the chair of the Pulmonary Department at Tulane. During this appointment on Tuesday, Dr. Lasky and two other doctors read her PET/CT scans and said that they did not see ANY new lesions - huh? Ok - deep breath - this could be a very good thing. Let's not get excited. Next step - another CT and bronchoscopy. Dr. Lasky said he thought that she has had a pretty good response to chemo - in his opinion. Based on the reads from Memphis and Tulane - there seemed to be a decent response to chemo - that's the good news. The bad news is that we were hoping for a complete response or a very good partial response and this didn't quite live up to that. The treatment moving forward will depend on the results of the biopsies and re-reads of the PET/CT scans. She had the CT yesterday evening and the bronchoscopy this morning. I think that all went well. Dr. Palomino (who also saw the new CT and 2-week-old PET/CT results) told me on the phone that he thinks her lymph nodes have gotten smaller in the last 2 weeks. I guess we'll get confirmation when I see the CT results in my hand. I pray that this is the case. If so, it takes her response from decent to partial which moves us closer to the auto stem cell transplant - and after we clear up any potential infection, then we may even have a very good partial response to ESHAP. Who knows at this point. It's been a roller coaster these last few months so we are hoping for the best right now. Quick update - just spoke to my mom who called as I was typing this post. Dr. Palomino spoke to Elizabeth and my mom and said that it is his opinion that based on his procedure this morning, that there is multiple things going on in her lungs - possible radiation pneumonitis, infection, and lymphoma. However, the lungs looked pretty good and that the initial tests showed inflammation but nothing malignant. That doesn't mean anything until the biopsy results come in but Dr. Palomino noted that he did not see, what he thought, were malignant tumors in her lungs. Fingers crossed but my hunch is that there are several cancerous nodules in there - hope like hell that I am wrong. Anywho, Elizabeth is in recovery and should be going home to rest in the next few hours. She is tired and needs to rest. My guess is that we will know more on Friday as the pathology results start to make their way in. Dr. Palomino said that he thinks that the cultures (for infection) will drag into Monday/Tuesday of next week so it looks like treatment might not start until the middle of next week - if there is no infection. Any infection will require antibiotics before treatment given the amount of chemo that she has had already. I will post again in the next couple of days to say how she feels. It appears possible that we may have some better news - but we are bracing for mediocre or bad - because it seems that most of the news lately has been that. Having said that, we remain very committed to fighting this and she is in extremely good spirits although she is very tired. Elizabeth is so strong - it is quite remarkable. Such a warrior. She will beat this - we know she will. In closing, I know that Trey Erwin passed away last week. We want to pass along our condolences to the Erwin family. Cancer is such devastating thing to have to go through and even worse when the loved one does not survive. It takes such a toll on a family as we are finding out first hand. On one hand, we feel so unlucky to have had this disease strike our family but it's almost impossible to not feel at least somewhat fortunate that Elizabeth still has a curable disease - even after multiple relapses, Hodgkin's can be cured - the odds go down, but it's possible. Hugged those loved ones tight! Take care everyone. More to come later this week. Much love, Scott

6/22 (Stem cell harvest, Anniversary, etc)

Lots going on since the last post but the BEST thing is that my family made it back to Memphis. I can't begin to tell you how awesome it is to have my girls back in town. As nice as it is to have some quiet time, having them gone for 3 weeks isn't all that fun. 

2nd round of ESHAP

Hello all - wanted to drop a line (or many) and update everyone. Elizabeth recently finished her 2nd round of ESHAP. As with the last one in May, she did really well for most of the week. The people at Tulane were great and she sailed through the first 4-5 days (all of treatment). I had to leave on Wednesday morning and come back to work but I checked in constantly. She ate well and got a decent amount of rest in while the girls bounced around from both grandparents' houses to New Orleans. We had a fantastic Tuesday night dinner at Lucy's in New Orleans. Lyla kept us entertained the entire time as she was dancing and cutting up for most of the night.

I made it back down to New Orleans on Saturday afternoon. Elizabeth was still feeling pretty good at this point - the only thing that really seemed to be bothering her was this nagging cold that she can't shake. Obviously, her immune system is severely compromised right now so that makes matters that much more difficult. The Ara-C (cytarabine) hadn't hit her yet because she got an extra dose of steroids on Friday. All that did was delay the inevitable as Sunday was really tough on her. We went to Tulane to get her blood work done and let her get her first shot of Neupogen. It comes in 2 small syringes (a 480 and 300 microgram dose) and she has to get this drug every day now until the stem cell harvest later this week. This is essentially the same thing as Neulasta so she has been quite "achy" and sensitive to touch the last few days. We are trying to manage as best as we can right now but it's tough. She slept most of the day on Sunday after we went back to my parent's house. I know that she has been semi-uncomfortable because the girls are around - she wants to spend time with them and feels guilty when she doesn't, yet she really wants to rest because she feels like crap. Really bad spot to be in. Fortunately, Anna has been soooo good during this that she completely understands and thankfully Lyla doesn't really know any different. Having said that, if Lyla sees Elizabeth, she wants to be with mommy so it's a little tougher than just going in another room.

Monday seemed to be a little better but still a day of rest. I had to leave to come back to work - although it kills me that I can't be there to help out. I just can't afford to lose my job - not now! Insurance is greatly needed at this point in time! Ha. Elizabeth is headed back to New Orleans today to stay at my sister's place. Grace has been a cleaning machine - trying to make sure that there are no issues for Elizabeth. She's fantastic! Thanks a ton, Grace! I think getting away for a few days while still feeling yucky will be good for her. Hopefully she can tackle this cold a little better and get back to feeling semi-normal. They are set to do some more blood work tomorrow and estimate the date of stem cell harvest. Typically, the harvest is done on day 14ish (day 1 was last Monday - first day of 2nd round of ESHAP). I hope that she can actually do hers on day 12 or so. I am driving back to New Orleans on Friday and it would be great if I could bring the girls back to Memphis on Sunday or Monday. I know that they are ready to be home - especially because July is going to be spent in Louisiana as well. I'll know a bit more about everything tomorrow and will try and update everyone then - I just need to know what her blood counts are. If she can get her white blood cell counts above a 1.2 then she'll be ready.

The stem cell harvest is a procedure that take blood stem cells (cells that haven't matured to white or red blood cells yet) from the patient through a process called apheresis. Basically, the blood is taken from a catheter (hers will be a catheter in the femoral artery) and passed through a machine. During this process, the blood is spun down and the stem cells are filtered off. The blood is re-infused back into the catheter and the stem cells are counted (through a process called flow cytometry) and frozen. She needs to have approximately 4-5 million cells per kilogram of body weight. She needs at least 2.5 million to proceed with the transplant so the collection may take more than 1 day. Hopefully not but it's tougher to collect so many in the first day. As usual - fingers crossed.

After the stem cell harvest, we should be able to come back to Memphis for 2-3 weeks. She will need to have a CT scan done to ensure that the chemo has killed her cancerous tumors and if all goes well, we will then proceed with the high-dose chemotherapy followed by stem cell transplant. The high-dose therapy is given in the hospital and usually takes 5-7 days to infuse. After day 10 or so, her immune system will be wiped out. Once that happens, they will re-inject her stem cells back into her and they will make their way back to the bone marrow and graft. Then she will have to stay in the hospital until her counts get sufficient to leave. This process usually takes 2 weeks after the chemo is done but hopefully my little warrior will make it out sooner. She has kicked this things' ass already so I think she may do very well during the transplant. Because this is an auto transplant (her own cells) then her time away from the kids won't be the 100 days like we said earlier. I think that there was some confusion about that and after talking to Dr. Pallera I think it should be much less - like 2-3 weeks after we get back to Memphis (6 weeks or so total). That was a relief to her.

All in all, she is doing great given what she is going through. Our parents and family members have been so very helpful that we could never say thank you enough. They have made our life much better than it could have been otherwise. I know that we appreciate it very much. We still have been overwhelmed by the support. We've got one more thing that we may need some help with though. Because of the nature of the high-dose chemo treatment and subsequent transplant, there may be a need for blood transfusions. We are going to try and organize a blood drive for Elizabeth. I am almost certain that she is A+ blood type. I'll have more about this very soon. I still need to understand this a bit better so if anyone has any info about how to go about doing a blood drive, please let me know. Thanks.

That's all for now. I'll keep everyone posted.

Love y'all,

Scott

Need some good news...

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

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

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

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!

Radiation Therapy

Well right before I started my radiation therapy, I did have a CAT scan. In the beginning of January we were extremely happy to hear Dr. Pallera say that I was now in remission.  On January 16th, I started radiation therapy. My treatment field included my right side, starting right above my jaw line, under my arm pit, to the middle of my chest. I didn't have to get all marked up with a sharpie like I had heard, because my radiologist put all of my marks on my mask that I had to wear. Yes I had to be lock down in a mask every morning.(It did have tiny holes in it so that I could breathe.) This mask is so tight over your face that if you had your eyes open when they locked it onto your face, you would not be able to close you eyes once it was on.  Thank goodness that I am not claustrophobic. Not sure what those people would do. Guess they would have to be medicated.  By about the second week, the inside of my mouth started getting sore. My doctor told me that I shouldn't be feeling any of the effects of radiation yet. But by about 2 1/2 weeks into it, my mouth was totally ulcerated underneath my tongue on my right side. I could hardly talk. I couldn't eat. I could only be on a liquid diet for about a week. And to make it worse, I couldn't drink anything cold. I could only handle liquids that were the same temperature as my mouth. This only lasted about 5 days, thank goodness. Once I brought this problem to my Doctors attention, he changed my treatment field alittle, and he continued to treat me below the jaw line now. I finished my radiation on February 9th. Now I am just going on with my life, working like normal,  just waiting to do my last PET scan. Dr. Pallera wants me to wait 6 weeks after radiation is over before I do it though. Just to make sure all my swelling goes down.

My hair is definitely coming back fast. It's about 1/2 an inch long and I've already colored it 3 times.  I recently bleached it blonde because I am now trying to camouflage the new bald spot I have in the back of my head due to radiation.

This is me coloring my hair purple for the LSU national championship game January 5th.
Three week after my last chemo. 

This was Anna and I at her first cheer competition.


6 weeks after my last chemo....... 












                                                                                                         My Bald Spot!!!!                                  

j

                                                                   8 weeks after....

                                                             

BLONDE!!!!

10 weeks after.....

                                                           
                                                           Memphis Grizzlies Game!!!
                                                            Feb 21, 2012

                                                     

Last chemo treatment 12/16/11

Ok, so I believe that most people who know Elizabeth also know that she had her last chemotherapy treatment last Friday, 12/16. Unfortunately, this one was not one of her favorites! Things went as planned on Thursday as Dr. Pallera told us that he was excited about her finishing chemo and moving on to radiation therapy in January. He told us that she would need another scan done in early January to give the most accurate locations for the targeted radiation. We discussed her blood counts and he determined that she didn't need another shot of Neulasta because her counts were high enough to sustain another round of chemo. That was the good news.

Treatment started as usual on Friday afternoon. There was the typical steroid/saline/Emend drip followed by the ABV being injected. So all is well until the dacarbazine drip. For some reason this didn't go down as we had hoped. She felt really nauseous this time. Not sure why but I am super thankful that it happened on the last chemo and not one of the earlier ones. Anticipating a nauseous feeling would have made subsequent treatments miserable. Anywho, she was feeling bad enough to decide to leave her car at the West Clinic. I drove her home and she went straight to bed. I gave her a little reprieve as Anna had cheerleading practice and Lyla stayed with me for the evening.

She rested most of the night with moderated discomfort. Normally she is very active for the first 24 hours or so after chemo but maybe it was just the cumulative effect after 6 doses that really knocked her down. She didn't do much of anything on Saturday. I kept the girls out of her hair and we hung out around the house most of the day. She perked up a little on Saturday night - I suppose as perky as a wounded soldier could be.

My mom came to Memphis to help out for a couple of days on Sunday. I obviously assumed that we would be fine until Sunday - little did I know that her body would play a trick on us! But all was well. She started to actually move about that evening. Anna had gone to spend the night at a friends house on Saturday so things were mostly quiet around the house anyway. I hope that we didn't do anything to keep her up. :-)

On Monday, we went to meet her radiation oncologist - Dr. Marks at Baptist Cancer Center. He was a very nice guy - extremely thorough in his discussion with us on how her treatment will go from beginning to end. They will do an initial set-up on January 6th to mark her spots - with PERMANENT marker! Haha. I'm thinking that maybe they will tattoo her with a map a Jamaica on her chest and Cuba on her neck. Ok, I kid. But they will be there for the duration of treatment. Now, one concern is this...Dr. Marks said she can't put on deodorant under her right arm during treatment as it may irritate the skin that is being irradiated. Oh boy! It's going to be a stink fest. I suppose that I will need to put up with her and her stickiness!!! Lol.

It looks like there will be 3-4 weeks of radiation for 15-20 seconds each day (each business day). Dr. Marks thinks that she is an ideal patient to be completely cured of this illness. Her response to chemo has been tremendous and he was encouraged by her progress. I now fully believe that she will be well in the next 2-3 months.

All in all, things are going great, even with the little hiccup this past weekend. She has been amazingly strong throughout this entire ordeal. She has been a true inspiration to me and many around her. And like she always does...she is back at work doing her thing behind the chair. She makes me shake my head sometimes! Sure do love her!!!

Hope everyone has a very Merry Christmas and a wonderful 2012. We have been so blessed to have you all as friends and family. Again, pay attention to your body. If something doesn't feel right, get it checked by a doctor. We are so lucky that we caught the lymphoma early - it made all of the difference in the world. And hug those that you love - for you never know when something could happen to take them from you.

Love to all,

Scott

Thanksgiving and treatment #5

Well chemo #4 wasn't so bad. I was just extremely tired so I slept alot. I was really looking forward to going home for Thanksgiving. So I think that kept my mind off of everything with chemo.  I had not made a trip home since May, so now you can understand how excited I was to get home to see family and friends. Our trip was wonderful! We were able to see all of Scott's family and eat dinner with them. Then headed over to see my mom's side of the family, where I got to see aunts, uncles, and cousins that I haven't seen in years.








On black Friday we were lucky enough to be able to go out to the
LSU vs. Arkansas game. We had a freaking blast.  As you can see our picture right here.  Really not sure why the guy behind us didn't want to be a part of our picture. Maybe he didn't want to be posted all over the internet. Oops!!! LOL.  Anyway we got to hang with lots of friends and family, and had lots of fun. Saturday and Sunday we spent with wonderful friends we don't get to see very often. Then on Sunday we picked out our Christmas tree and drove it home of the roof of our car.

My work week was great this week until treatment #5 on Friday. I am almost through with my chemo treatments and no one knows how excited that makes me.  I will be finished with chemo on December 16th. Perfect timing to have a wonderful Christmas with the family. I will still have a months worth of radiation starting in mid January, but Dr. Pallera seems to think that this won't be as hard on me as the Chemo.

I am recovering at home this weekend from Chemo #5, and this one is very similar to Chemo #4.  No nausea, just extremely tired. So I have been sleeping alot. I'm able to eat better food this time with out being scared that I going to hate it later. So all in all, pretty good weekend. Thanks to my mom for taking care of me and the girls this weekend.

Anyways, thanks to everyone for all of the love, support and PRAYERS!

Love,

Elizabeth Noel

I thought about waiting until tomorrow but... (11/17)

I just couldn't hold out. I needed to come on here and tell everyone that we received some fantastic news today. Two weeks ago, Dr. Pallera told us that he would like to see Elizabeth's tumors at least 50% percent reduced in size by the end of chemo treatments. Weeellllllllll, guess what? You know it - they have shrunk 90% in just three treatments. It was better than we could have ever hoped for. I know people may say she was unlucky to be stricken with this cancer but no need to dwell on that...well, now we are just damn happy to have this treatment working so great. We are so very blessed!

We went to see Dr. Pallera ahead of tomorrow's chemo treatment (#4 of 6). Her blood work looks great - so good, in fact, that she will not need the neulasta shot on Saturday. Her white blood counts were really high so even with a treatment, they should be ok for the next 3-4 weeks. She received her CT scan at 10:30 or so and we waited. We were sitting in the exam room waiting on Dr. Pallera and she was so nervous that the results wouldn't be that great. I told her not to worry - even if it wasn't ideal we still had 3 more treatments plus radiation. Everything would be fine I kept telling her. Little did we know how great the news would be. Dr. Pallera is so stoic in his demeanor that you can never get a read on him. Sometimes you'd like to just put your hand on his shoulder and say "Doc...just hit us with it, will ya?!?" But I saw a really interesting look in his eye - like he was about to deliver some wonderful news. If you don't know what that news is by now just re-read the damn blog people! Haha. Kidding.

Tomorrow is obviously the next chemo treatment. Elizabeth's parents are headed to Memphis tomorrow to help out. Hopefully this treatment and the few days after will go smoothly. They have been ok to date so we are just hoping for status quo. Then we get to FINALLY go back to Louisiana for Thanksgiving. We haven't been "home" in so long. We can not wait to see everyone. It's been too long. And we have sooooo much to celebrate this Thanksgiving - so very much to be thankful for. Family and friends and the outpouring of support to name a few things.

This journey has been interesting to say the least. We are ready for it to be over but know that there are some rough times ahead. That is why I am so happy about today - just proof that things are getting better. I think back to when she first told me about her "lump". We are so lucky to have caught this illness so early - there is no doubt in my mind that the early detection has allowed the chemo to work so well. I know I've said it before but I want to remind everyone - YOU know your body better than anyone. If you feel something that isn't what you think it should be, keep an eye on it. If it's making you nervous, go see a doctor. Believe me, a 2-3 hour doctor's appointment will be well worth the peace of mind and in our case - it was a potential life-saver.

We want to continue to thank you all so very much for all of the thoughts and prayers. They are working! I also want to tell my dear Elizabeth that she is the strongest damn woman I've ever been around. I have the privilege of watching this rockstar on a daily basis. She is just amazing! I don't think that I can accurately describe her in any other way!

I'll update everyone on the chemo treatment this weekend. I've got my fingers crossed.

We send our love to you all!!!

Scott