Family

50 Pint Challenge

During Andrew's long battle with cancer he has needed many, many blood transfusions. We have started a donation challenge on Facebook to encourage our huge group of supporters to donate a pint of blood or platelets, and help us reach our goal of 50 pints. Those who have been following this blog know his story, but I will reprint what we put on Facebook:

Our Story: 

Last fall, at age 48, my husband Andrew was diagnosed with widespread, stage IV non-Hodgkin's Lymphoma. The chemotherapy regimens for these types of Lymphoma are aggressive and lengthy, often lasting a year or more. Lymphoma patients are frequently hospitalized and often need multiple blood transfusions. We estimate that Andrew has recieved approximately 35 bags of blood products, both whole red blood and platelets, during the past year.

Blood banks rely on volunteers to keep a steady supply of blood products for patients in need. Andrew and I feel strongly about returning the favor- although he is unable to donate, I will be donating regularly. We are blessed with an amazing community of friends and supporters from all over the country, and many of you have asked how you can help. We've decided to initiate a 3 month, 50 pint donation challenge! Over the next three months, we encourage you to donate a pint of either whole blood or platelets at your local blood bank. If you are unable to donate, enlist a friend, family member or even a stranger! :)

In addition to donating, we ask just one more favor...have someone snap a picture of you (or your friend) donating blood or platelets and post it here to our Facebook page or to our blog. You'll get virtual high-fives from all over the country!

In the spirit of holiday giving, we ask you to join us in reaching (or exceeding) 50 pints, and helping to save a life.

Love and gratitude,

Linda and Andrew McTiernan

So if you are on Facebook, please go to our page to join the challenge: https://www.facebook.com/50PintChallengeGiftingLife

and even if you are not on Facebook, you can join the challenge and post your success to this blog.  Thank you all for your continued support and messages -- we read them all, and they are helping so much!  

xo

L

Back to the beginning.

It's been a difficult few weeks here.  Andrew has been feeling generally terrible on the new oral chemo regimen.  He really wasn't able to get out of bed at all during last week, and he was having increasing pain. We decided it was time to call Dr. W and get a CBC to see if he needed some blood support. The CBC showed that A's platelets were low so Dr. W ordered a transfusion for the next morning.

The pain became unbearable that night and Andrew couldn't sleep a wink, so we went for the transfusion, and then I called Dr. Z's office to let them know what was going on. After a while, his nurse called me back and said that Dr. Z. wanted us to come right away to the Urgent Care at MSK, and that Andrew would most likely be admitted. So we drove down last night, and Andrew was admitted around midnight.  The doctors say that he has very high levels of calcium, which have been increasing since September. They don't believe that the chemo drugs caused the calcium spike, but that it's caused by the lymphoma. This happened to Andrew once before, at the beginning of this whole ordeal. I had to look back into the blog to find it -- right before he was due to start his very first chemo treatment, he had a calcium spike from the widespread lymphoma which led to his 5-week hospital admission. So now we have arrived right back at the beginning.

Dr. Z. is away at a conference until Wednesday, so I'm not really sure what is going to happen next. They're giving him drugs and fluids to get the calcium down, and then hopefully he will be able to come home. I don't know yet if he will be getting his treatment as planned on Tuesday, or if they will change course.

Thanksgiving

The lenalidomide did not work as we had hoped. The PET showed a good deal of growth. Andrew has started the first of two rounds of an oral chemotherapy -- I'm not even sure what it's called -- I think I stopped listening after seeing the scan. Fortunately, Andrew listened, so he knows what he's supposed to take and when.


We hope everyone has a lovely Thanksgiving -- thank you for all of you thoughts and prayers all year long!


xo
L

quick update

Hi everyone,

Just a quick update -- Andrew has finished his first course of lenalidomide. He went into it not feeling great -- he was having debilitating headaches from a sinus infection (very hard to get rid of these things when you have no immune system), but Dr. W. prescribed some ABX that really helped. After that, things seemed to go pretty smoothly -- a few uncomfortable side effects, but no transfusions were needed during the 23-day course, so I consider that a victory!  He had his PET scan yesterday at MSK and we will see Dr. Z. on Tuesday for the results. We are looking for "no growth".  Dr. Z said it could take up to 3 courses to get rid of the cancer, so "no change", while not ideal, would be an acceptable result. If there has been growth of the cancer while on the lenalidomide, then we move on to the next option.  Andrew's blood counts were all good yesterday, but his weight was down 10 lbs from last month. He did have some nausea, so I guess it's not too much of a surprise, but he's feeling much better now and Thanksgiving is right around the corner -- we'll be sure to stuff him with lots of pie!  His hair is also growing back -- the first time it came back after chemo it grew in gray, now it's growing in dark -- chemo is so weird.


xo
L

an answer at last

We saw Dr. Z yesterday, and he told us that they finally, FINALLY know what kind of lymphoma we're dealing with and why it has been so resistant to chemo.  Dr. Z said that Andrew has had 2 populations of B Cell lymphoma coexisting in his body.  It probably began as one, but when cells divide they sometimes mutate into different things -- no one knows why.  One population of the B Cell lymphoma was a common type that responds well to chemotherapy -- that's what they were able to get rid of with ICE. The second population mutated into a different, rare type of B Cell lymphoma called activated B Cell (ABC) that is very resistant to chemo drugs. The reason it's been so difficult to diagnose, I imagine, is that the early bioposy samples must have been full of both populations, but since they were all B Cell it was hard to understand what was happening. They had to get rid of the first population to discover the second.

Fortunately, Dr. Z says that the lymphoma that's still present has all of the classic markers for its subtype, so we can now be clear about what we're dealing with and how to properly treat it. The bad news, obviously, is that its a very difficult type of cancer that previously offered a poor prognosis. The good news is that in just the last 2-3 years some new drugs have been developed that are showing real promise for eradicating this subtype of B Cell lymphoma. He's starting Andrew immediately on a drug called lenalidomide, which is a cousin to the old drug thalidomide (it's safe as long as you're not planning to have any babies while taking it!). It's not a chemo drug, it has a completely different mechanism of action -- in fact, they don't really know how it works, but it somehow targets and kills cancer cells and spares the healthy cells. It comes in a pill that Andrew will take every day for 21 days along with Rituxan, and then Dr. Z will check the progress. He said it could take 2 or 3 cycles of the drug to completely get rid of the cancer, and then we move on the the bone marrow transplant. If it doesn't work, we move on to a different drug. There aren't too many studies on lenalidomide for this type of lymphoma yet -- it was approved by the FDA 3 years ago for multiple myeloma (a different type of blood cancer), but it is starting to be used off-label for lymphoma as well. The few studies I could find were done on elderly patients, so we really don't have any good information on long term results for younger people. Andrew will be a sort of test case I suppose. This is when I think being at Sloan-Kettering will really pay off -- if we have a chance to beat this, it will be because we are here, where they have experience with the most difficult cancers, and access and knowledge of the newest available therapies. Dr. Z's body language was noticeably changed yesterday -- he was commanding and forceful because he had unraveled the mystery of diagnosis, and can now do what he is renowned for -- applying novel treatments.
The best part is that Andrew gets to be at home for treatment, not in the hospital. No IV's, terrible roommates, bad food, etc.  We can celebrate Thanksgiving and Christmas with the boys in a normal fashion. He will have many of the same side effects as chemo -- low blood counts, possible transfusions, fatigue, nausea, etc., but we can deal with it in the comfort of our own house.  This is huge for us.

We don't really ask Dr. Z about prognosis ever -- Andrew feels like that's pretty useless info because it can so often be wrong, and is calculated using factors that may not apply to each individual. You just have to take each development and each day as it comes, and make decisions based on your individual results. He's a living example of this -- it's amazing that a year later he's still alive and feeling so well, considering how terribly sick he was last year. But he's like a Timex, that guy,  he takes a licking, keeps on ticking. He's been through everything and more, and he just keeps going and keeps fighting.


I receive daily lymphoma news alerts through Google, and I'm always stunned by how many people are being diagnosed with lymphoma every day -- children, teenagers, adults -- sports figures, newscasters, politicans, musicians, actors, moms, dads, school children. All of these people will most likely need a lot of blood products and many of them will need bone marrow transplants during treatment. The Thanksgiving and Christmas/Holiday season is a great time to donate blood through your local Red Cross or join the national bone marrow registry: http://marrow.org/Home.aspx

Give the gift of life!

xo
L

quick update

Andrew had his liver biopsy this past Tuesday. Before he was wheeled in we spoke to the doctor about what had happened during the last biopsy. He told us that non-diagnostics only happen in 5 percent of all biopsies.  So we were just in that lucky 5, I guess.  Anyhoo ... the biopsy went smoothly, and after it was done the doctor told me that the samples were "definitely diagnostic".  So, I'm holding him to that promise.

Andrew has been having a bit of a rough time after this one. The liver area is sore, and he's having a lot of nausea and trouble eating.  I guess this is why they don't want to go poking around in there if they don't have to. But there hasn't been any blood or sharp pain to indicate internal bleeding, so that's a blessing. We haven't heard yet from Dr. Z's office about when to come in for the results -- about a week, I would think.


We got to have dinner with our old friend John Fisher the other night.  We haven't seen him since Chuck's wedding more than 2 years ago. We had a great time laughing and catching up, and cancer didn't even come up until the very end of the evening, so that was superb!

life on the treadmill

I almost didn't know how I was going to write this post, mainly because I didn't think anyone would believe it! We went to MSK yesterday for the results of the needle biopsy. We were sort of dreading it, and tried to think of the ways it could go:

1) Dr. Z says "here are some brochures for my 5 favorite mortuaries" (Andrew's joke)
2) it's "xyz" lymphoma, and we're admitting you today for fabulous new chemo cocktail
3) it's some weird infection, here's an antibiotic, and we'll see you next month for your transplant.

But we never, ever, EVER seem to be able to predict correctly. Instead, we were told -- the sample is non-diagnostic.  What?
The surgeon extracted enough samples, and some atypical cells were seen in some of the samples but not in others. This means that they cannot conclusively say if they are cancerous or not. Which means ... wait for it ... ANOTHER BIOPSY! This time of the liver!  You're kidding.  You're kidding, right?! So the 96 hour chemo infusion was a waste, the following PET scan was a waste, and the CT assisted biopsy was a waste. It's almost too much.  It's like a bad soap opera that you would turn off, because it's just too far fetched. But this is what it is.

So, now they want to do a PET assisted needle biopsy of the liver. It's impossible to see any liver mass on the CT scan, but you can see it light up on the PET scan.  They will put Andrew in the PET and take some samples from his liver. They could have done the liver to begin with, it seems, and it would have been more accurate, but it has more risks. The liver bleeds when you start sticking it with needles, and Andrew doesn't have such great platelet function these days. But his counts are much better now that he's a month out of chemo, so hopefully everything will be fine.

Of course all of this means more radiation, and more delay on necessary transplant treatment as my husband continues to be used as a human science experiment. And I'm beginning to believe that they will never be able to come up with a diagnosis. But you can't refuse any of it -- not if you want to live.

love and light

Andrew had his needle biopsy done yesterday at MSK. It was fairly easy, and he doesn't have much pain as a result.  We don't know yet when the pathology will be complete -- maybe about a week or so. Which is good -- another week to live in blissful ignorance of what this new thing might be.

Andrew and I aren't big pray-ers ourselves, though we are very grateful for all of the prayers and wishes being sent our way.  We've both had moments of darkness, when I'm sure we whispered a desperate plea to the universe, but generally we take our strength from each other, our boys, our family and friends.  We're wrapped in so much love -- it gives us the strength to continue when things are uncertain.

I've realized just lately however, how much strength I take from our surroundings as well. We live in one of the most beautiful places in the country, the Hudson River Valley, and have never been so happy. It's almost untouched, with miles of gorgeous trees, mountain ridges, clean air, and the sparkling Hudson River.  On Thursday, when we had just received the unsettling news that we were now dealing with not 1 but 2 cancers, Andrew and I walked to the train in a bit of a daze.  We were befuddled and angry, scared and tense. But as the train snaked it's way up the Hudson towards home, I could feel a lot of the tension leave my body.  And I understood that I'm pulling my strength from those rocks and that river. We have so many happy memories here -- the place is in our bones now, and we are a part of it. Maybe that's what God is.

Struggling for air

Yesterday was not our favorite day.  We know now not to build up false hopes, but we were feeling pretty confident about the EPOCH.  Andrew has been feeling good (despite the low blood counts) and we were so encouraged by the post-ICE scan. I anticipated that Dr. Z would send us back for another round, but that it would be slowly working.  We were totally unprepared for "no change".  No Change!  After a 96 hour infusion!  Dr. Z. put the 2 PET scans up side by side and they were indistinguishable.

Before the EPOCH, DR. Z had discussed 2 theories -- that these are 2 different cancers, or that it's 1 cancer that needs a good, long chemo bath.  After consulting with the tumor board, Dr. Z. said "over 50 years of combined experience makes us believe that it's one cancer", so let's give it a bath.  Well, it appears that they made the wrong guess, and now we move to Door #2 -- 2 separate cancers.   Exhale.

I understand that doctors are not infallible gods. I do. I understand that this is a tricky cancer.  But 4 different institutions, scores of doctors and pathologists, and no one can figure this out after an entire year?  Meanwhile, Andrew has had to endure round after round of chemo, six radiation-filled scans (with more on the horizon), not to mention the countless transfusions and drugs.  Sorry to vent, but can somebody please unravel this soon!  As Dr. W. said to Andrew the other day -- "at this point there's no protocol -- you just try everything you have." Exhale.

The wrinkle in all of this is that Dr. Liu, way back at Westchester Med, last January, said that he suspected it was 2 cancers.  I believe his exact words were "it's almost like you have 2 different cancers."  !   But we were forced by the insurance company to leave Westchester, and I'm trying not to make myself crazy by imagining all the months of treatments Andrew might have been saved had we been allowed to continue there. Or if I had been tough enough to get him into Sloan at the very beginning.  But he was so desperately sick then and we were terrified.  Dr. Liu saved his life by making a series of really aggressive treatment decisions. After being informed that Westchester was no longer in the picture, we had only a few days to figure out how to keep him on his treatment schedule. During Christmas week!  Breathe, breathe.  Anyway, that was then, this is now.

So.  Dr. Z has ordered a needle biopsy of a node in his neck sometime this week-- thank god it's not another surgical biopsy -- I think Andrew would have thrown in the towel right there.  They will test it a thousand different ways and hopefully, someone will know what it is.  And maybe they'll know how to treat it.

And that's all for now.

Recovering

Andrew has spent the last week recovering from the EPOCH infusion.  He's crashing now, but still seems ok -- he's fatigued and nauseous, but generally hanging in there.  EPOCH contains some of the drugs that we haven't seen since our hyper-CVAD days (back in Westchester and AMC), so he's unfortunately revisiting some side effects that we had forgotten all about -- hello, vincristine!

We have an appointment at MSK on Thursday for a bright and early PET scan followed by a visit with Dr. Z.  Usually we don't get the PET results until several days after, but it seems they're moving things along quickly.  So that's great -- let's go!  I'm assuming Dr. Z will give him another round of EPOCH, unless by some miracle it's in remission and we can move ahead to the transplant.  I hate to say too much these days -- Andrew and I were laughing that everything I write on the blog lately turns out to be wrong! Dr. Z keeps changing his approach, and the plan is never the same from week to week.  I'm not complaining -- I know these are the very best doctors and I love that decisions stay fluid depending on input from tumor board, etc.  One of the things that frustrated us at Albany was the stone-clad protocol. They decide what you have and "this is the protocol" -- they don't waver.  We asked a few times about additional approaches (things we knew about from research), but the answer was always we don't do that, we do this -- end of story.  Things seem very different at MSK -- with a very problematic cancer like Andrew's, we've learned that there really is no protocol.  You have to try things, because they really don't know what will work -- they certainly know what to try, but it makes you realize how far we have yet to go with cancer research.  They really don't know why many cancers  transform and become resistant to drugs -- they're very honest about not knowing, which I appreciate.

So, I was under the impression that Andrew would not get a transplant unless they get the cancer in remission, but it seems like that's not the whole truth -- it's looking like he will get the transplant, but there are much better odds of success if it's in remission.  What you don't want is for any pesky cancer cells to overpower your brand new donor cells. So this is why Andrew's on the endless chemo loop. I think they must feel that he's young and can endure more than your average cancer patient.

I'm sure it seems like there's a lot of guessing going on, and that the doctor could easily clear up all of these misunderstandings. It's hard to describe how all of this has been an evolution -- as they've tried to get a good diagnosis (I'm still not sure if we've ever gotten a definitive diagnosis), and the longer we're in chemo, the question and answer sessions get fewer, because we're all only focusing on one thing at the moment -- just getting the cancer in remission -- so we don't talk too far ahead, we don't micromanage anymore.  As I told a friend the other night, now we say "tell us when to show up" and that's it.  Andrew's feeling good -- hopefully, fall is all about a successful transplant, and we can soon  return to our lives.

xo
L

The EPOCH epoch

Andrew has been recovering slowly from the 2nd round of ICE.  He needed several transfusions of platelets and one transfusion of RBC's, which were handled by Dr. W here, near home.  On Friday, his platelets were still very low, and I knew that meant Monday's treatment would be delayed. Monday, I talked to Dr. Z's nurse at MSK, and she told us that Dr. Z wanted to see Andrew today for a bone marrow biopsy.  Andrew was not happy, to put it mildly -- bone marrow biopsies are his least favorite procedure!!  But he got on the train like a good cancer patient and headed into the city.  I was unable to join him as the short notice made it impossible with the kids' schedules.  Dr. Z ended up deciding against the biopsy (hooray!), but told Andrew he would be admitted immediately to start chemo -- what?!  His platelets are still low (though much better), but Dr. Z said he didn't want to wait any longer and give the cancer a chance to grow again.

"We've been talking about you a lot" he said. Gulp. Much better to be the patient they don't need to talk about a lot, isn't it? The tumor board has been poring over his case and his very stubborn cancer.  They initially wanted to do the bone marrow biopsy to see if they were dealing with 2 very different types of cancer, but eventually decided that it was most likely not so.  Instead of continuing the ICE or the IVAC regimens discussed earlier, the group and Dr. Z decided to give Andrew a 96-hour continuous infusion called EPOCH.  This is a cocktail often used for very stubborn cancers that have developed chemo resistance.  Studies have shown that a continuous infusion at low concentrations can sometimes be more effective than brief, high dose infusions for chemo resistant cancers.  The plan is to get the 4-day EPOCH (that just sounds so weird -- a 4-day epoch), get another PET, and if necessary do another 4-day EPOCH cycle.

Has anyone ever had as much chemo as my husband?! Lordy. Hopefully, the EPOCH does the trick and we move onto transplant!

still in the game

So today's appointment was a mixed bag.  Dr. Z showed us side by side views of Andrew's most recent PET scan and the PET from early July.  The cancer has had been significantly reduced -- actually we were kind of shocked to see how much cancer was still present in July, as we had never seen that particular scan.  There really has been a huge improvement between then and now, so that's great news -- however, there is still cancer present which is certainly not ideal.  Things seem to be heading in the right direction, but it's being very stubborn, and rather than do a 3rd round of ICE, Dr. Z seems to be leaning towards giving Andrew a round of chemo called IVAC.  The IVAC contains some drugs that Andrew's lymphoma hasn't seen yet, and has "a reasonable chance" of getting rid of the remaining disease.  Dr. Z did say that he wants to discuss the options with his colleagues at tumor board before making a final decision to continue with ICE or move directly to IVAC.  Andrew's blood counts are still recovering from the last round, so he'll be getting a transfusion of red cells tomorrow at Benedictine, with chemo to begin next Monday.  It's obvious Dr. Z wants to move quickly back into chemo before the cancer has any further opportunity to grow.  The IVAC would be a 5 day course in the hospital, followed by another PET scan 2 weeks later.

So that's the situation.  We're certainly hopeful that the next round will knock out the little bits that are left and get Andrew into remission and on to the transplant.

xo
L

Holding Steady

Andrew has been recovering well from the second round of ICE.  He hasn't had any infections, and knock wood, it's looking like we might make it through without any hospitalizations!  He did have a pretty good blood count dive though, and Dr. W said platelet transfusion was necessary, but that we could do it as outpatient -- hooray!  So Andrew had a transfusion on Tuesday night, and another one today, and he'll also get one every day for the next 4 days.  But before you freak out at how intense that seems, being able to do it as an outpatient is a huge achievement -- it means he's actually fairly well, just low in his counts.  The counts should start climbing back up tomorrow or the next day.

Tomorrow, Andrew heads into the city for the next PET scan. This is the scan to determine how well the cancer is responding to the ICE regimen.  Dr. W (our local oncologist) said it doesn't have to show that all of the cancer is gone, just that it's moving in the right direction. If it's not having a positive impact, we move to the next chemo mix called GEMOX.  Obviously, we're hoping the ICE is working, but we try not to get too attached to any particular outcomes anymore.  We just listen to our doctors, try to keep our life as normal as possible, and cross each bridge as it arrives.  We're due to see Dr. Z on the 4th for the results.  If the ICE is working, Andrew will have at least one more round (possibly two) before the transplant.  The goal is remission.  My wonderful friends, Melissa and Heidi (and their lovely husbands) pitched in this week to help with the kids during all of the transfusions -- a huge shout of love to them for all of the support.  And a big thanks to Bia and Kristi for all of the treats!  Everyone continues to be so lovely and generous in their support of my little family, and we only hope we can return the favor someday -- under better circumstances, of course!

xo
L

Round 2 -- ICE

Andrew has just been admitted for the 2nd and most important round of ICE.  We were crossing our fingers that his platelets would be ready to go.  Albany would never give chemo unless they were at the 100 mark -- Dr. Z. said 70 was his go ahead.  Today platelets came in at 67 -- good enough, apparently -- moving forward!!

no movement

This is a very late update -- no chemo this week.  Andrew's platelets actually haven't moved at all!  This is some kind of crazy intense chemo -- we hope that means it's working!  On the positive side, Andrew's feeling really good right now.  So we wait.

We just finished a really busy and fun 2 weeks with my family -- assorted aunties, uncles, cousins and grandpa all flew in from all over the country to visit us and lend support -- it was so much fun, but by the end we realized how tired we were.  Not just from the the visit, but from the last 6 or 7 weeks. We've been going non-stop since the boys got out of school in June -- we really wanted to squeeze all the fun out of this summer that we could, as it was such a hard year for all of us.  And I think we did!  Although we had some very hard days and a few hospital visits thrown in the mix, Andrew got to spend a lot of time and have a lot of fun with his boys this summer.  Now things are winding down -- the four of us just stayed at the house for the last 3 days relaxing, sleeping, and generally behaving like vegetables.  It's been really wonderful (and necessary).

 I feel recharged and ready to head into all that awaits in the fall -- namely, a bone marrow transplant!  It's sort of hard to believe that we've been waging this fight for nearly a year.  I'm sad to think that we have to explain the situation to a whole new set of teachers at the boys' schools -- we were really hoping this would be behind us by now -- but ... he's alive (!), he's doing really well, and we've absolutely learned how to appreciate every new day together.  Everything appears to be moving in the right direction -- things can get very bad and very scary from time to time, but Andrew always rallies, always bounces back!  It's amazing to me how strong he is, no matter what is thrown at him.  Andrew heads to the city today to meet with the transplant doctor, who will check his levels and explain everything that is going to happen over the next few months.  We were told that once the cancer is put into remission, there is a very small window of time in which to perform the transplant.  The best news is that we think we have a donor -- Andrew's youngest sister Julie!  Though some test results are still pending, Dr. Z says it looks very favorable.  Andrew sent a funny email to all of his siblings letting them know that Julie had "won" the sweepstakes.

Later, I'll add some pictures from our summer fun, and also write a post about Sloan Kettering.  It's been wonderful and frustrating at the same time, and deserves it's own entry!

Another round of thanks for all of the love and help we've received this summer.  The boys both had birthdays this summer, and they were showered with so many gifts and so much love, they may never recover! ;)  We have such wonderful and generous friends and family, and we are so grateful to all of you.  We know this has been a long, exhausting year for everyone, and we are thankful for all of the time and support everyone continues to offer us.

xo
L

home at last

After some more transfusions today, Andrew was discharged.  We are so happy and relieved, as this has been a really traumatic week for both of us.  The fever and other complications were worrisome, and as per usual, we never seem to realize the severity of things until we're mostly through it.  Andrew is feeling pretty good now, though weak, and said that he didn't quite realize how sick he was until he started to feel better. The most unsettling part is that these infections seemingly pop up, full-blown out of nowhere.  No warning signs or ramping up to alert you that something is not right.  But he's back on the mend (although I'd put money on round 2 being delayed another week).

And he's losing his hair again -- my poor guy.  He had finally grown back all of this lovely salt-and-pepper hair, after months and months of waiting.  The ICE has put an end to that -- it's falling out in large clumps.  Andrew has been entertaining the boys by telling them to pull his hair -- when they saw the big tufts in their fingers, they laughed with amazement.  Not sad or scary to them, just cool!

It's so wonderful to have him home.  When he's not here the emptiness is so deep and wide.

Back to Bennie

Andrew had to be hospitalized this week with a neutropenic fever.  R-ICE chemo is very similar to the hyper-CVAD that he had early on, in that it wipes out all of his bone marrow function, leaving him very vulnerable to disease.  Well, he caught an infection and spiked a 102 fever which lasted about 3 days.  So we headed back to Benedictine under the guidance of Dr. Zelenetz and our original oncologist, Dr. Waheed.  The 2 are coordinating care, so that Andrew can stay local until our next appointment at MSK on Thursday. It's looking unlikely that he will be ready to start round 2 by next Friday -- his white counts and platelets are rock bottom right now, but you never know.  He's already received 3 bags of RBC's and 3 bags of platelets for support, as well as numerous antibiotics, anti-fungals, etc.  He was quite sick for a few days, but he always seems to rally remarkably well -- today he was feeling much better and anxious to come home.  Dr. W said he'll probably be there through the weekend.

It was kind of strange coming back to Benedictine(Bennie) after all this time.  It was great to see Dr. W. again, but Andrew was so incredibly unwell the last time we were there -- strange memories of a very scary time.  It really is the place to go for a pleasant hospital stay though -- so quiet and peaceful, nothing like the noisy, busy, fluorescent hospitals we've been at ever since.  The lighting is soft, the rooms are large and private (no crazy roommates!) the floor is so quiet, and the view is of the mountains.  They do treat the sickest patients very well there.

Chemo #2 -- or is it #3?

On Thursday Andrew and I went to the city for the appt. with Dr. Z.   There wasn't much that was "new", although the bone marrow biopsy came back clean -- great!  It's still an aggressive DLBC lymphoma, expressing CD+5.  It's a fairly new classification of DLBC, so there isn't much written on it yet that I could find.  The FISH tests are still pending, but Dr. Z is ready to move ahead with the R-ICE regimen.  He arranged for Andrew to have another PET that evening, to see what has changed in the last month, and to inform the dosage of chemo.  Friday morning Andrew started the Rituxin, and today he will be admitted to MSK for a 3 day round of ICE -- you can google it :)
He'll get an injection of neulasta on Thursday to stimulate the white blood cells, then home.  In 23 days we do the whole thing again.  After the 2 rounds, DR. Z will give Andrew another PET to see if the drugs are working.  If not, we'll move on to cocktail #2.  The immediate goal is remission.

I'm down to giving just the facts these days.  We're scared right now, and I'm finding it hard to write the way I could in the past.  But I do want to keep everyone informed -- we've been amazed by the outpouring of support, and are so grateful.  I'm not sure how we would have made it this far without all of the help, love and good wishes we've received.  We're also being taken very good care of at MSK, which removes some of the fear.  So keep your fingers crossed for Andrew today.  It's traumatic to head back into the chemo after all he's been through, but as always, he endures everything without complaint.

Phase II

Andrew had his biopsy last Friday at Memorial Sloan Kettering Cancer Center  (MSK, for short).  Everything went very well, no problems, although he does have a rather large incision on his neck -- yikes!  He's been feeling pretty good lately, considering.  Just a bit tired, but with this massive heat wave coming through, we're all tired!

The surgeon told us the biopsy results would take 7-10 days to come back, but we just heard from MSK that they want us to come in tomorrow for an appt. with Dr. Z.  I'm glad -- i asked if he could expedite things, and obviously he could.  So tomorrow we get to find out what the second half of this madness will look like.  I forgot to mention that Dr Z gave Andrew another bone marrow biopsy on our first visit (his favorite!), so we'll get those results, plus the results from the new node.  Hopefully Dr. Z will now know which chemo cocktail is most likely to put this sucker in remission.  Should be a busy few months -- keep your fingers crossed for us!  :)

Full circle

I discovered something yesterday.  While researching info on the bone marrow transplant, I came across a sentence in a hematology journal that discussed using initial chemo to reduce tumor bulk, and then consolidating the treatment with the transplant.  And I finally understood ... when Dr. Liu (way back in Westchester) had told us that the transplant was a given, he knew that the upfront chemo was not going to eliminate the disease.  We had asked at the time if the transplant was necessary, and he had  said, "oh, yes."  But then we were forced to leave Westchester and go to Albany.  At Albany, the protocol is -- transplant as second line therapy, only after relapse.  But they don't even have a transplant unit at Albany, and possibly don't have a culture around that treatment.  Dr. Liu and his partner Dr. Ahmed (the lymphoma-maniac) are very experienced hematologists.  I think they knew from the beginning that Andrew's lymphoma was so aggressive that the plan was always to use the frontline chemo to just reduce the bulky disease, and then they would go after it hard with the high-intensity chemo and transplant consolidation.  This doesn't change anything for us -- obviously, that's what we're scheduled for now.  But we might have been saved all of the grief over that last PET scan, had we understood that the transplant was always the endgame.

After we were moved to Albany, I always had a nagging worry about what Dr. Liu had said, because he was so adamant.  But when Albany said it was not part of their frontline approach, we really had no choice -- he needed to continue with treatment.  And we wanted to believe that it wasn't necessary.
Finding that little tidbit has actually made me feel a lot better -- like some unanswered questions had been put to rest -- that we're proceeding with the proper course of treatment, rather than trying to salvage some unexpected, dire situation.  You cling to the little things, I guess ...

not dead yet

Andrew titled this post -- fortunately, he keeps his sense of humor throughout.  Sometimes it's a real drag to be such tragic figures, day in and day out, so he told me to update the blog with "not dead yet" and leave it at that.

But I know that many of you would like some actual details, so ... We finally made it to Sloan Kettering last Thursday.  We had a very long, thorough visit, which was satisfying if not happy.  We're just so comforted to be there, in this place where all they do is think about cancer, treat cancer, all day long.  We first met with one of Dr. Z's medical fellows.  I can't remember his name, but he was lovely and had really done his homework on us.  He said he wanted to relate back to us our entire journey from the  beginning, and that we were to jump in if he missed anything.  Obviously, this was not something he could do if he only viewed Andrew's chart for 10 minutes prior to our visit.  He knew every detail -- and that was just so amazing.  We've seen so many doctors during all of our many hospital visits, and you end up telling each of them the same story over and over.  Here, he told us our story!  Off to a good start.

After the medical fellow had finished the history and examined Andrew, Dr. Z came in.  We didn't have to go over the whole history again, he just got right down to it.  Everything in cancer, he told us, starts with the diagnosis.  And Andrew's diagnosis has even stumped Sloan Kettering's top doctors and pathologists.  Without a definitive diagnosis it's very difficult to know which drugs to give, because some are only effective on certain types and so forth.  Dr. Z believes that Andrew's rare cancer is most likely a small cell leukemia that transformed into a large cell lymphoma.  The types are difficult to distinguish -- it looks a lot like a mantle cell (which they thought at Westchester), and also kind of like a CLL (type of leukemia), which Dr. E had thought at Albany.  The problem is that they can't say with 100 percent certainty because it's demonstrating certain gene markers of each, but not all.  So, they're planning to continue testing the tissue block from the original biopsy, plus take a biopsy of a new node that has appeared on andrew's neck.  Cancer is very smart, unfortunately.  It keeps changing and mutating, so after a few months you may have something very different than what you started with.

Fortunately, Dr. Z confirmed that all of the treatment Andrew received thus far was appropriate -- no mistakes were made.  It's just possible that the chemo was likely never going to have worked.  He said we really should have seen a clean PET after the first rounds of hyper-CVAD.  We saw a lot of improvement, but it should have been clean.  So ... Dr. Z does not favor the autologous stem cell procedure that was recommended at Albany.  He said that stem cell transplant is not an appropriate term -- it should be called stem cell rescue -- and that what Andrew needs is an actual transplant, which would come from donor bone marrow.  Essentially, the stem cell rescue is just more chemo, and would not ultimately be effective for Andrew.  What Andrew will get is called an allogeneic bone marrow transplant.  He will receive high intensity chemotherapy to put the cancer into remission, followed by a transplant from (hopefully) one of his siblings.  The chemo will be much more intense than the hyper-CVAD he originally received.  In an effort to destroy the cancer cells, it will literally destroy his bone marrow/immune system, thus the need for a transplant.  It's kind of like the bionic man -- "we can rebuild him!"  The first challenge though, is to get a better diagnosis so they know which chemo will be most likely to put the cancer in remission.  Andrew will have a biopsy this week (still waiting on details), and they will use that info to make a decision.  I'm hopeful that the chemo will then start next week.  They do want to start things as soon as possible, because you don't want to give the cancer more opportunity to grow.  He's feeling pretty good now, though fatigued.  I'm glad he's stronger going into this than he was last November.  It won't be easy for him, but we're hopeful.  Dr. Z is so confident and knowledgable -- we're so grateful that we're under his care.

I will try to update more regularly, though sometimes it's just so hard to write about it.  Andrew sends all of his thanks for the love and support.  He's doing well right now, and is feeling very positive and ready to tackle the next phase.

xo
L

the fight continues ...

Tuesday was a terrible day.  The news was unexpected and absolutely unwelcome.  We were in a very bad state on Tuesday -- today on Thursday we're feeling a bit more hopeful.  Still upset, but more hopeful.  After a quick but thoughtful deliberation, we've decided to go right to Sloan Kettering for further treatment.  I still had my old contact numbers from last November, so yesterday morning I called and fortunately they remembered us and were very helpful!  We now have an appt. for next Thursday to see Dr. Andrew Zelenetz, the top lymphoma specialist at Sloan.  He specializes in difficult to treat lymphomas and is currently heading up 26 different clinical trial for DLBC, Andrew's type of cancer. If anyone can help us, he's probably the guy.  We feel like we have one last shot here, and we have to get it right.   Huge love and thanks to my sister Terry and Michael M. for making the necessary calls to get us in at Sloan!  Here we go ...

reflection

I haven't posted in so long, and I haven't been consistent at all of late.  Just wanted you all to know that we are so touched by all of you who have followed this blog through the many, many hard months.  Andrew had been looking so well, feeling so well, doing so well recently that we thought, at last, that this terrible stuff would be behind us soon.  It seems not to be the case.   Two weeks ago Andrew found another small lump on his neck. We were concerned but knew it could be inflammation from the chemo.  We knew there was really nothing to do until the final PET scan.  He had the PET last week, and we went to Albany today for the results.  The PET showed that the cancer has not completely gone.  And there are some spots that are lighting up even brighter than after round 4 PET, most concerning in his liver. Dr. E. was pretty frank -- it's not a great situation.  He will have a biopsy Monday of either the liver or the new neck lump, and then he will start 4 rounds of a new, intense chemo to prepare for autologous stem cell transplant.   Salvage, they call it. We are planning to call our old Dr.'s, Dr. W and Dr. L. from Westchester for opinions, and probably head down to Sloan as well, although it all has to happen rather quickly.  We're very sad, as we never thought it would ever come to this, but hopeful as well.  We're going to give it everything we've got.

xo
L

Lymphomathon

Hi everyone,

Long time no post!!  we've been very busy this month, getting Andrew through his final recovery, wrapping up school for the boys, and participating in the Greater New York Lymphomathon!Huge thanks to all of you who generously donated to our Lymphoma Research Foundation team page!  We reached our goal, and raised over $5000 for the LRF!!! The Lymphomathon was on June 5th in Old Westbury, Long Island.  It was an absolutely gorgeous day and we had such a good time -- it was fun, but also therapeutic for Andrew to see SO MANY lymphoma survivors at one time, in one place.  Friends and family met up with us at the Old Westbury Gardens estate, and we all had a ball. Andrew and I think we'll try to do it every year if possible. 

Knockout in 8 Rounds!

Receiving the last bags of chemo.

After a week's delay (for pesky platelets, of course), we headed back up to Albany Med for Andrew's 8th and final round of chemo.  We had a moment where we thought we might be turned away again -- the nurse thought his WBC's were a bit low still.  But fortunately, the doctor gave the go-ahead and were on our way!  Everything went smoothly and we were finished in about 6 hours.  The entire clinic staff was so sweet and congratulatory -- the gave Andrew a "Purple Heart" certificate, the nurses all blew soap bubbles and everyone applauded.  After all he's been through the past 7 months, the applause certainly seemed warranted!  It was a bittersweet and emotional day.






Andrew is due back in a month for the final PET scan and follow up with Dr. E.  We are overjoyed to be finished with chemo, and hopeful for the future.

We can't express how grateful we are to all of you, who have been following this blog, extending your good wishes, prayers, and hopes for Andrew's recovery.  We are indebted to all of you who gave us so much of your time and assistance over these many, many months.  It certainly would have been a very lonely and scary journey without all of the love and support.


xo

FINISHED!

Linda

Off to the finish line!

Round 7 recovery is going well.  I don't want to jinx anything, but Andrew's blood counts should start climbing back up any day now -- no hospital intervention needed!  What a relief.  He's been very tired and had a couple of bad nights from the neupogen injections, but a much easier recovery this go round.

So now we just wait for the last and final round -- #8.  It's a bit nerve racking as we get near the end.  We're certainly thrilled that the chemo will be over and done, but just hoping that it did it's job and that all the cancer will be gone.  Thank you to everyone for hanging in there these many months with us.  Your love and messages of support were incredibly helpful during the dark days. As I write this, Andrew is outside playing baseball with his boys, and just so grateful that he's able to do it!

xo
L

Nearly there.

Thank you to everyone for all of the continued support.  It feels like the never ending journey!

Andrew had round 7 yesterday, which went smoothly -- in at 9, out by 2.  He wasn't sure that his platelets would be at chemo-safe levels in time to get treatment, but he just squeaked by, thank goodness.  Now we're anxiously waiting for the crash which should happen this weekend.  The goal is to stay out of the hospital!  He's promised to just rest a lot this week, as we both want to finish up as quickly as possible.  It's hard to believe that it's finally coming to an end -- we're scheduled to do the 8th and final round on May 21st.  Our lovely oncologist, Dr. E (or as we still call her, Lisa Loeb) has gone out for 8 weeks to have her baby.  We're happy for her (her first baby), but also sad that she'll miss the last round.  She helped us through so much anxiety and so many difficult decisions when we first arrived at Albany Med.  We don't really know who we'll be seeing for the end visits, but the whole group consults (at "tumor board" ), so whoever it is will be familiar with our case.  Unfortunately, Andrew's case was far from typical, so we're pretty well known there now.  Andrew is now feeling good and healthy other than the constant fatigue.  He's really looking forward to wrapping up this chemo and getting strong again.


I've decided to participate in a "lymphomathon" 5K walk to benefit the Lymphoma Research Foundation.  They are a fantastic organization, and an invaluable support to lymphoma sufferers and their families.  During Andrew's treatment, I spent an insane amount of time on their website gathering resources and information.  The lymphomathon is on June 2nd, on Long Island, NY.  Anyone is welcome to join our team "the Mac Daddies" and walk with us.  It's held at an absolutely gorgeous 200 acre estate, and the course winds through lovely wooded areas and gardens.  I can't guarantee that Andrew will be there -- it all depends on how he feels after round 8 (he may be crashing), but I'll be there with the boys and family members.  Please join us if you're able, to celebrate the end of this madness.

You must register to join the walk -- here is the link to our page:

https://www.kintera.org/faf/donorreg/donorPledge.asp?ievent=1001827&supId=356927680&extSiteType=1


xo
L

keeping our heads down

Well, round 6 was very eventful.  we thought it would be smooth sailing to the end, but we were reminded, as always, that cancer and chemo are in charge, and it ain't over until it's over.  Round 6 actually went well -- it was our first outpatient experience.  We were in and out in about 6 hours, which was wonderful.  Andrew felt a little beat up, but not too bad for the next few days.  We were out in the garden planting, cleaning up, and having a great time.  Then day 8 hit him like a ton of bricks.  He was on the couch all day.  Day 9 he couldn't move from the bed and we knew he was struggling.  We decided to head to the doctor's early the following morning.  Andrew was back in the wheelchair, as he was unable to walk into the clinic.   I was trying not to panic, but it was so unexpected -- we thought we were beyond this point.  They drew his blood, while he rested in the infusion suite.

Dr. E. came right over to see us, and told us that all of Andrew's counts were near zero again -- critically low, and that he would have to be admitted for transfusion and antibiotics.  Andrew was not happy to hear this -- he has reached his emotional limit with hospitalization.  But we knew there was no choice -- his bone marrow has been so beaten up by the chemo that it's not yet functioning well on it's own.  Dr. E. told us that this is not unusual -- lymphoma patients are in and out of the hospital all the time, due to the aggressive nature of the treatment.    We waited around until the hospital had a bed for him.  That night, Andrew was given 2 units of red blood cells and round-the-clock antibiotics.  The next morning he was given 2 more units of RBC's, and his counts started creeping back up.  The following day, the on-call doc decided Andrew was well enough to be discharged.

So we have 2 more rounds to get through.  Most of us think "2 rounds -- hooray, no sweat, it's almost over!"  but for the person going through it, the last rounds are usually the hardest.  The body is just so weak by the end, that it's like glimpsing the top of a mountain and you're unsure if you have enough strength left to get there.  So keep your good wishes coming for the last 2.  We will all get him through this!!!

xoxox
L

delayed again.

Andrew's platelets are not cooperating, so no chemo today.  :(   We're rescheduled for Monday -- hopefully  a restful weekend will help all the blood cells reach chemo safe levels.

Happy Easter!

Spring Break

Andrew had been feeling so well after round 5 that we decided to take a little "spring break" from cancer.  It was such a long and difficult fall and winter, that we really needed a respite from it all.  We decided to drive down to Washington D.C. to visit my sister, see the cherry blossoms, and show the boys the sights.

Andrew did have a few pretty rough days about a week after the chemo.  The neupogen injections gave him some terrible bone and muscular pain, and he was unable to sleep for 2 nights.  But after that, he was feeling really good.  We drove down to D.C. on a Friday night and stayed for 3 days.  We took the boys to the zoo, toured monuments, had a few dinners with friends, and searched in vain for cherry blossoms (early bloom this year).  Although it was wonderful and fun, we probably did too much.  Andrew was feeling poorly yesterday, and spent most of the day on the couch recouping his strength.  I guess we really wanted to pretend everything was back to normal and went overboard.  He's feeling better now and we're gearing up for round 6, which starts on the 6th.

Life on drugs.

I've been meaning to post this picture for awhile -- mostly just to document for ourselves how crazy life has become.  Taking pills has never been Andrew's thing.  Other than Rolaids, and the occasional allergy relief, he's always been pretty averse to taking anything.  This is an aspect of treatment he really detests -- it's a whole different ball game.  The drugs above are medicines Andrew now takes daily.  Daily -- all of them!  He has to take anti-virals, anti-fungals, kidney protection, heart protection, eye drops, ear drops, steroids, blood cell production injections.  This doesn't include all the anti-nausea drugs and other things he's given during each hospital stay.  Now that we may be done with the hospital, I'm afraid we'll have to add them to the daily regimen.

I'm a fairly organized person, but it's not easy keeping these all straight -- which ones to take once a day, which ones are twice, or four times.  This one goes for five days post each chemo, this one for seven days post chemo.  Not to mention the many, many trips to the pharmacist for refills. Incidentally, the costs of these drugs would floor you -- a bottle of acyclovir is $100, a single injection of neupogen costs $500.  Neupogen has to be taken for 7 days following each chemo round -- the doctor has been fighting with our insurance to allow us to get a single injection that can be done in her office called neulasta, but they keep refusing, so I can only imagine it must be even more expensive than the neupogen. It's a really insane schedule of drugs, and very easy to see how patients can fail to take all their meds correctly.  We've forgotten a few doses here and there, simply because with the sheer number of pills, we couldn't remember if he had taken something already.  I can't imagine how elderly people manage, unless they have someone helping them keep it all straight.  I should have made a big chart with dosages and days, and made check marks for each dose taken.  Oh well -- an idea that hopefully we'll never have to use...

update from round 5

So sorry it's taken me so long to post an update after round 5 chemo!  It coincided with work deadlines, and I was a bit crazed all last week.  The good news is that R-CHOP (Andrew's new regimen) is a breeze compared to what we're used to.  Oh my goodness -- we checked into the hospital on Thursday night, and he was done by midnight, discharged by 11:00 am the next morning!  We're used to 3-4 days of heavy duty chemo plus intense after effects.  And they tell us that the last 3 rounds may be able to be done at the office in the infusion center (this is where people go to get regular chemo that doesn't require hospital admissions).  We would arrive in the morning and spend about 6-8 hours and go home -- no hospital needed!  The idea of that is so overwhelmingly wonderful, we barely want to contemplate it, in case it doesn't happen.

Andrew has been doing really well post treatment.  He's had fatigue and nausea, but nothing, NOTHING compared to what happens after hyper-CVAD. He's been feeling pretty good, and now we understand how people in regular chemo treatment can go to work and have a life.  It's just such a different experience. So, we're all still keeping a close eye on him, to see how the blood cell production fares -- he's scheduled for a blood draw tomorrow, and another one next week.  We're still doing the nightly neupogen injections to stimulate white blood cell production, and he still takes a million pills every day, but all in all, such a huge change for him!
We're obviously thrilled about the PET results, but always wary.  We hope that the less intense chemo is able to take care of what's left in the nodes, but the doctors are optimistic, so we are too.  Cautiously optimistic.   Round 6 is scheduled for April 6th, if all goes smoothly.  Thanks to everyone for hanging in there with us all these many months.  It's been a very long slog through this treatment, but we can see an end in sight finally, finally.  Now we start to count down!

Love and thanks to you all!!

xo
L

Good news for round 5

We're in Albany toady, waiting to be admitted for round 5.  We saw Dr. E this morning, and she was all smiles.  The PET scan report shows lots of progress thus far -- the lymphoma is gone from Andrew's bones, marrow, spleen, and liver, and has significantly reduced in many nodes!  There is still "activity" lighting up on the PET in some of the nodes, but much reduced, and we still have 4 more rounds of chemo.  We are feeling very confident today that we will get rid of this thing!  It's nice to know that all the hell he's gone through has been worth it.

The new chemo regimen sounds like a dream compared to what we're used to.  Andrew will now be getting all of the IV R-CHOP drugs in one day, and take high dose oral prednisone for 5 days.  So potentially, he'll only be in the hospital for a day or 2, and the recovery should be much easier.  I will try to post some pics, as I've been remiss lately.

Love to all for the continued support.  We are truly astounded by the outpouring of love and generosity we've received these many months -- I really don't know how we would have gotten through without it.

xoxox
Linda

delayed again.

Well round 4 seems to be the gift that keeps on giving.  Andrew was supposed to begin round 5 on Thursday, a week late, but his platelets still haven't reached normal levels.  We must taxi the runway for yet another week, while they return to the chemo-safe threshold.  It's good for him to have some more time, but frustrating for us, as it prolongs the whole experience.  He just has not been able to bounce back well from the dreadful fourth round.  He's feeling very weak, and all of the blood draws are becoming very painful for him.  We are so glad that the "B" cycle drugs are no longer in our future -- I would have been a basket case anticipating the next dose.  He's improving in small increments every day though -- his white blood cells are in normal range, and his red blood cells are nearly there.  I'm confident that by next week he'll be ready to go.

He also had a mid-point PET scan a few days ago.  Unfortunately, the radiologist wasn't finished reading it by our appointment.  Our doctor saw it briefly and could report that there is still cancer activity present (expected), but much reduced.  She will be able to go over it with us in greater detail next week, but the plan remains the same -- 4 more rounds of R-CHOP followed by another PET at the conclusion of treatment.

halftime!

Oy!  I was in a really bad mood when I wrote that last post.  I'm realizing that I don't write much when things are going well -- we're too busy trying to enjoy a semi-normal life -- but when things are difficult, it just pours out of me.  Cancer life is so up and down -- we have good days and really bad days.

We did get some good news this week though.  Dr. E is recommending that we switch to a less aggressive chemo, R-CHOP, based on Andrew's new diagnosis.  Because Mantle Cell lymphoma has been ruled out, the hyper-CVAD regimen is no longer necessary.  She has ordered a PET scan for Wednesday to see how things are progressing, and then Andrew will be admitted for round 5 on Thursday.  R-CHOP is basically the same drugs that are used in the A cycle, every round -- no B cycle.  hooray!  she also believes that Andrew can stop the intrathecal infusions now -- 6-8 was the plan, and he's had 7.  So things are looking up for the second half!!

Thanks again for all of the supportive messages and emails.  This was such a difficult month for us and I'm sorry if I haven't properly responded.  The love and support means so much to us.

xoxo
Linda

still here. *warning* -- could be a downer

Andrew did not get released on Friday as we hoped.  Nor did he get released on Saturday or Sunday.  But finally today, AMC has decided that he is well enough to be discharged.  It's been a bit draining for us because it was all so unexpected -- shades of Westchester days.  We got a little overexcited about his revised diagnosis and forgot that cancer is ridiculously unpredictable -- anything can happen at any time.  Chemo is very hard on the body -- the organs, the central nervous system, the circulatory system, everything.  And the more treatments you receive, the harder it gets.  Though the cancer is lessening, the body gets weaker from the toxic load -- the "cumulative effect".  Andrew needed an unbelievable amount of blood support over the last week -- I've actually lost count, but i think he received 6 units of red blood cells, 4 or 5 units of platelets, and nightly injections of neupogen to stimulate the white blood cells. Plus countless bags of antibiotics, and cups full of pills every morning.  It's exhausting just to watch -- I can't imagine what it must be like to actually endure it.

Many cancer sufferers and their loved ones don't actually identify with a lot of the "rah-rah" sentiments you generally see in the media.  Andrew and I talk about hoping for a cure, but never about "beating" cancer.  I'm also pretty sure that when this is over, I'll never describe him as a "survivor".  That kind of talk has never really resonated with us -- cancer is not a competitive sport, you see. It's going to kill you if it can -- no matter how many vitamins you took, or veggies you ate, despite your resources or positive attitude.
It is an unspeakable disease that robs you of your health, your home and family life, your money, your peace, and subjects you to every fear and indignity you can imagine.  If you're lucky, current therapies and protocols can stop it, slow it, or eradicate it.  And hopefully, the treatment itself doesn't cause more problems, such as related infections, or leave you with a weakened heart, nervous system, or the myriad other complications that can arise.  Andrew will be getting scans and blood tests, probably for the rest of his life.  We are forever changed by this experience, despite good chances for "survivor" status.   And when the treatment is done we won't feel like champions, only gratitude that we somehow managed to eke out a few more days and years with each other and our kids.

There are a few slogans I do like, (in case you feared that I am totally humorless).  I like "Cancer Sucks", which is written on the bracelets my sister got for us.  Short and to the point.  Because it really does suck.

I also like "Love Kills Cancer", which I saw on a t-shirt, because while love doesn't really "kill" cancer, it absolutely makes it suck a hell of a lot less.

progress

He's feeling much better today!  Andrew is still in the hospital, but may be able to get out of there tomorrow.  Things were actually worse than we thought -- Dr. E. told us all of his blood counts were at zero (very bad), plus he had a nasty ear infection and no immunities to battle it.  BUT, thanks to the amazing ministrations of the 4th floor AMC team, he is back on the road to semi-health.

bump in the road

We're back at AMC today unexpectedly.  Andrew has had a rough time recovering from the last B cycle -- it's just so hard on the bone marrow, and we'd been warned that the effects would be cumulative.  His hemoglobin, white count, and platelets are all critically low, and he's at very high risk for infection right now.  Dr. E is re-admitting him today, and they will give him at least 2 units of blood and platelets, as well as antibiotics.  She said he'll be here for a few days most likely, while they try to restore normal blood functioning.  He doesn't look well at the moment -- very pale, thin and extremely weak.  He was barely able to get into the car, and needed a wheelchair when we arrived to help him into the clinic offices.  It's so hard to see him suffering like this, he is normally so physically strong. But I know that after a few units of blood he'll be feeling much, much better, and will hopefully have a few good days before starting round 5.

xo
L

critical chemotherapy drug shortages!

http://www.sacbee.com/2012/02/14/4263342/the-leukemia-lymphoma-society.html

some of you have seen this from me already on Facebook, but for those who haven't please take a minute to copy and paste this link -- it's an article that appeared in today's news about the critical shortages of some chemo drugs used to treat blood cancers.  Two of the drugs in critically short supply nationwide are methotrexate and cytarabine.  Andrew receives these drugs every cycle!! They are vitally important to his recovery. The above article includes links to your local congressional representative -- the Leukemia and Lymphoma Society is urging people to contact their reps and ask them to take the necessary steps to end the drug shortages.  I've already done this -- please take a minute and send a quick email, we would be so appreciative!  These drugs have been vital to the progress he's made against the disease so far, and he's only halfway through!

thank you!!

xo
Linda

round 4 down!

This was a rough one, no doubt about it.  The B cycle just sucks -- the protocol is a 24 hour IV infusion of methotrexate followed by a Lucovorin "rescue" to protect his kidneys from the methotrexate, 4 doses of cytarabine over 2 days, plus intrathecal infusions of both.  Andrew spiked a high fever on the evening of day 2, and has felt awful since.  But the fever is gone now, and his numbers are better than he feels, so they're letting him come home today -- hooray!  They're giving him a pint of blood now, which should help him feel better, and then we're out of here -- if I can wake him up. ;)

We're due back on Thursday to see Dr. E (whom I now adore, after giving us such wonderful news), to check his blood levels and get the final dose of intrathecal cytarabine that completes the cycle.  The on-call doctors had mentioned that they may possibly start phasing out some of the intrathecal infusions, as they might not be needed any longer, so we'll check with Dr. E and see what she says.

In the meantime, we have several neupogen injections chillin' in the fridge, just waiting for him to come home!  

good news at AMC!

Andrew was admitted yesterday to AMC for round 4, B-cycle.  We saw Dr. E for our regular early appt.,  and she had the good news that the pathology was finally back.  The hematology group had sent the path out for deeper testing (FISH gene test). The FISH had also been done in Kingston and Westchester, so we weren't expecting any kind of different news --  the biopsied node had some of the markers for Mantle Cell Lymphoma (MCL) but always tested negative on the FISH for the chromosome translocation that is usually present in MCL.  Our previous doctors had been treating the cancer as if it were MCL anyway though, because it followed typical patterns, had some of the markers, and was very aggressive.  I've learned that lymphomas rarely fit into a little box of "this one" or "that one" -- there can be all sorts of minute differences in individuals that make pathology very difficult to read and interpret.  It's not anywhere near the exact science that we would like to believe it to be.  And cancers do all sorts of strange things and mutate in unexpected ways, which is why, I suppose it's difficult to eradicate them.

But the AMC pathologists went a little farther and examined the pathology of Andrew's gall bladder as well.  (If you remember back to Thanksgiving, Andrew's gall bladder was found to be infected, and was removed, delaying chemo and causing us all lots of stress!).  As far as we know the gall bladder pathology had never been examined in relation to the lymphoma -- we had been told that it wasn't necessarily related to the lymphoma, other than the cancer had probably made an existing irritation worse.  But I never felt completely comfortable with that, because reading I had done showed frequent GI tract involvement in cases of MCL -- it's one of the "patterns".  So I just assumed that it was MCL -- the doctors were treating it as such, and it followed the patterns.  The big problem with MCL is that it has a habit of returning after treatment, so we felt fairly certain that we would be fighting this all our lives.

But the AMC pathologists found something different.  When they examined the gall bladder tissue, they found evidence of malignancies that pointed to a different kind of lymphoma altogether.  The pathologists believe that Andrew's lymphoma actually began in the gall bladder, and may have been there for many, many years as a slow growing "indolent" MALT (mucosa- associated lymphoid tissue) lymphoma.  MALT lymphomas most commonly begin in the stomach, but can begin in other GI organs as well, and are often caused by bacteria.  The lymphoma transformed over time, and became very aggressive, spreading throughout his lymphatic system in the few months before he was diagnosed.  By the time the gall bladder was removed it was completely infected -- indeed, the surgeon pronounced it "juicy"!  Dr. E. said the FISH test came back negative for a third time, and that they believe it is not Mantle Cell, but a transformed lymphoma -- MALT to Large B Cell.  Already, some reading I've done confirms that transformed MALT is very difficult to distinguish from MCL and DLBC.  The good news about this diagnosis is that these types of lymphomas have an approximately 85-95% cure rate.  Dr. E. said the hematology team recommends the same treatment that he's on -- finish the 8 rounds of R hyper-CVAD, and then he should be good to go -- no stem cell transplant needed, just follow up scans.  

Obviously, we were thrilled to hear this.  It all just makes so much sense, like pieces of a puzzle falling into place.  The Westchester pathologists had also theorized that it started as a slow growing lymphoma, but this was the first we heard of the gall bladder connection.  In their defense, Andrew was very sick when he arrived, and there wasn't time to do a lot of questioning -- they had to make their best guess and begin aggressive treatment immediately.  So ironically, it seems that getting kicked out of Westchester by our insurance company may have been a blessing!  We've gotten a fuller picture of the disease, and it may have prevented Andrew from going through an unnecessary SCT.   At the very least, if it is some sort of sneaky MCL after all, he's still getting the appropriate treatment, and a SCT is an available option if there's a recurrence.

But interesting, isn't it, that it took three different teams of pathologists and hematologists (including a Sloan consult ), working off each other's information to put all the pieces together?   Cancer is so unbelievably tricky.

A huge shout out to the 4th floor nursing staff at AMC -- they are taking such incredible care of Andrew, and are on top of everything!!

xoxo
L

Round 4 -- halfway there!!

We just picked up the grandparents at the airport -- 7:30 am appt tomorrow to be admitted for round 4.  This round is the more difficult "B" cycle, but round 3A went so well that we're hopeful it will be easier this time.  I'll update more tomorrow, but now off to get some sleep!!!  xoxo

blood count update

Everything is going well with Andrew's blood counts -- we went for the blood draw on Thursday, which showed all his levels starting to climb back up.  He didn't need to have a transfusion after all, which was great news, but we have to go back for another blood draw on Monday.

Andrew's feeling pretty good - a bit tired and weak, but otherwise good.  He was really pumped up with fluid when he was discharged -- he's gone from 180 lbs. to 150 lbs in a week, and now he feels more or less back to normal.  He's just going to rest up for the next few days, enjoy the Superbowl, and get ready for round 4.

I apologize for slacking off on my updates -- we've been trying to settle back into our life, as much as possible, when Andrew's out of the hospital.  :)   Thank you for all of your continued love and support -- we're full of gratitude for our amazing friends and family!!  

Life on hold.

Things had been going along quite smoothly during this recovery period -- we made a quick trip to AMC on Friday for a pop of intrathecal chemo. Andrew was a bit under the weather for 2 days after that, but today he felt really good, and looked really good.  We were due back at AMC today for the last 15 minute infusion of vincristine which officially ends round 3A -- unfortunately, his blood draw showed that the white count had fallen to really "critical" levels, so they were unable to administer the chemo.  :(

We're now due back on Thursday for another blood draw and possible transfusion.  We're disappointed -- he seemed to be doing really, really well this time -- we were hoping to get into the city to see some friends, he was going to try to work a few days this week, -- you know, have a life.  Instead he'll be holing up at home trying to not contract an infection of any sort.  But we're learning that this is the deal on this regimen -- very little opportunity to do anything but get your chemo, recover from your chemo, and get your chemo again. Lather, rinse, repeat.   Life really, truly is on hold until summer it seems, so we're telling ourselves to just get comfy and settle in.  So to all of our friends,  we miss you!  Don't forget us -- we'll be back!!! ;)


xo
L

Home

Andrew came home tonight.  We have to go back on Friday and then again on Tuesday for 2 more quick pops of chemo, and then cycle 3 will be complete.

He's feeling pretty good, and looking really good.  He had the vincristine today, and I could tell it was taking a  toll as we were driving home, but he managed to stay up for dinner before heading off to bed.  All in all a big improvement over the last 2 homecomings, so that's encouraging.  He'll probably feel pretty bad for the next week or so as the blood counts dive.  But ... another round down, another day closer to cancer-free.

Inspiration

I was having a moment of darkness, as I seem to do whenever Andrew goes back into the hospital.  I much prefer it when he's home, and I can stay busy taking care of him, the kids, dealing with insurance, etc .... just keep managing the situation.  But when he's at the hospital, it's all out of my control, and I start to feel a bit at sea (though I'm aware my "control" over the situation is all an illusion).   Anyway, I've learned that if you google too much, you can get really depressed.  And if you get good at adjusting your search terms, you can find even more information and it gets worse.  So I was really thankful when Chuck emailed a great interview with Jonathan Alter, a journalist who was diagnosed with Mantle Cell lymphoma in 2004, at 46.  Naturally, as a journalist he tried to uncover everything he could about his disease.  I was mostly struck by his take on statistics and how they can be very deceiving (can you believe they don't really have good data on overall survival for those diagnosed at mid-life vs. elderly?), but really everything he says just resonates.  His experience is so familiar to me, and it really calmed me down to know many others have shared the horrors and indignities of this disease, and lived to tell the tale.   So of course, I googled him some more and found this great piece from a few years back.

http://www.thedailybeast.com/newsweek/2007/04/08/my-life-with-cancer.html

and here is the more recent interview:

http://www.webmd.com/a-to-z-guides/exchange-tv-chronic-illness/transcript-surviving-cancer


*  sorry, looks like the first one won't link -- you'll have to copy and paste it into your browser window.

up and running

No sign of any blood clots so the chemo was resumed today, although they will continue to monitor his heart very carefully.  chemo can be very difficult on the heart, which is why they do a special scan (MUGA) before beginning any chemo treatment.  hopefully, all will be well now.

i'm back home with the boys today.   chuck, tommy and annie came up to be with andrew -- so that must've been funny -- hope the nurses didn't have to ask you all to settle down!  ;)

xo

Bump in the Road

The doctors halted Andrew's chemo yesterday after discovering a slight heart arrhythmia (irregular heartbeat).  They don't seem overly concerned, and listed about 50 different things that could be causing it -- from side effects of the chemo, to lack of sleep.  They've given him an EKG, echocardiogram, and CT scan of the heart to rule out blood clots.  We're waiting for the results now, and the attending doctor said if they scan shows no sign of a clot, they will resume the chemo tomorrow morning.

And Away We Go

Veritable lazy susan full of drugs and blood products!

Here we go

Andrew was admitted to Albany Med yesterday for Round 3, "A" cycle.  When we saw the doctor in the morning, she said his hemoglobin count was very low -- 7 (normal counts are 13-17).  We knew he was having a hard time rebounding from the B cycle, but he was feeling relatively good yesterday -- I can only imagine what the counts must have been last week when he felt terrible -- yikes!  Anyway, the doctor ordered 2 units of blood for him, and said that between cycles he would need to have his levels checked.  He received the blood last night, and today they gave him an additional 2 units, as well as starting the chemo drugs.  "A" cycle is a little crazy, in that he gets many, many things at once.  They start the day with a cup full of pills -- antivirals, benedryl, allopurinol (to protect the kidneys), anti-nausea drugs.  Then they start the blood products, IV rituxan (antibody wonder drug), then fluids, mesna (more kidney protection), and 2 chemo drugs, decadron and cyclophosphamide.  Phew.

We got to peek at notes in his chart yesterday -- it was a little disconcerting, reliving those early weeks, and reading about how dreadful and widespread his cancer was (plus a lot of stuff we didn't understand).  But we also read this -- Current Status:  partial remission.  So, hey -- we thought that sounded pretty good after only 2 treatments!!

Just a side note -- if you haven't given blood in awhile and are blessed with good health, please trot over to your local blood bank and give some up!  It really is a lifesaver.  xoxo

L

round 3 -- here we come!

There hasn't been much to write about the last several days.  It took Andrew 12 days to recover from round 2B chemo -- a lot of sleeping, nausea, and general exhaustion.   Today was the first day he felt really, really good -- and so of course that means it must be time for more!  Ha!  We're back to Albany bright and early tomorrow morning to start round 3, A cycle.  It's terrible for him to just start feeling better, and get right back in it, but I feel it's best to just keep pushing forward -- get it over with as soon as possible (easy for me to say, I know). Hopefully, A cycle will be a bit more gentle with him.

Sorry to be so out of touch with everyone -- this month was the first time we were back on our own without all of the wonderful family help.  It was nice to be at home for awhile, just the 4 of us, but it's also been challenging -- I've been quite busy.  So I will try to return all my overdue phone calls this week!

xoxo
L

Happy Birthday!

Andrew turns 49 today -- to celebrate, he took a nap!

Blood Cells

I haven't posted in a few days as Andrew's been pretty sick from this round of chemo.  They told us that the B cycle is tough, but we thought they meant while you were getting it -- I guess they really mean "after"!  It was a much more imuno-suppresive round, so he's having some trouble getting his blood counts to rebound, which makes him feel generally terrible.  I gave him 6 daily injections of neupogen for the white blood cells, but the platelets and red blood cells were left to fend for themselves.  Apparently, this aggressive treatment just destroys the bone marrow (from whence all those important blood cells grow)!  He's had some bloody noses from low platelets but they seem to be abating now.  The red blood cells are another story ... he's still incredibly fatigued and can get very light headed if he's up for too long.  I'm going to give Dr. E. a call tomorrow to see if he needs some supplemental blood, though he seems to be rallying a bit.  It's supposed to be normal to feel awful as the blood counts bottom out around 7-14 days after treatment, so that's about where he is.  We're still new at this and aren't really sure what "normal" recovery is yet.   
I've been doing a lot of reading about this regimen in preparation for the possible stem cell transplant, and if it weren't so effective I'd be pretty scared. Many older patients aren't able to finish the course -- it's just too intense -- but it really has much better outcomes for patients if they can endure it.   Unfortunately the effects are cumulative as you continue, but Andrew is so strong and so determined -- he'll get through it.