Our Last Goodbye.

I always meant to continue writing the blog. When Andrew was sick it was so helpful and therapeutic for me to document the process, as if writing would grant me some control over the uncontrollable. For an entire year, I wrote. Many of you - friends and loved ones read along faithfully and sent beautiful, loving messages of encouragement. I wrote and wrote until the end – until that day in the hallway of Sloan Kettering when they told Charles and me that it was over – that they had tried every possible therapy, but that the cancer was too strong, and was now unstoppable. “How long?” we asked, numbly. “Weeks” was the answer. And that was it. I had to go into that hospital room and tell the dearest person in my life that his year-long herculean effort was for nothing. That the doctors had said we could go home and there was no reason to come back. I was terrified to tell him – he had struggled so hard and endured so much to stay with us. But he knew already that it was done. “It’s got its claws in me, babe” was all he said. He could feel it physically, in every cell of his body. After that day, I couldn’t write anymore. What was left to say?

When we returned home that last time, we climbed into bed and I tried to make Andrew as comfortable as possible - at this point he had constant, widespread pain.  I cried and Andrew, ever stoic, said, “Well, we did it, my love.” By which, he meant that we had created a beautiful, amazing life together - that we had loved each other as well and as thoroughly as was possible. He was congratulating us for getting it right. I will never forget that moment. We had to finally face that after nearly twenty years together our time was at an end –- that we would have to say our last goodbyes.

The next two weeks were a terrifying and excruciatingly sad haze of morphine and inadequate hospice care. Someday I will write that story if it ever becomes less painful and less rage inducing to think about. I carry tremendous guilt (and probably always will) for not being able to provide a better death for my husband. To helplessly watch a loved one suffer so unbearably and so needlessly has a profound, altering effect on the psyche. I will always regret that I did not have the courage nor the shrewdness to deliver the fatal dose of morphine that would have put a compassionate end to his agony. He certainly would have demanded it from me, had he been able.

After Andrew’s death, I wrote a few more blog posts. I wanted so badly to keep him present, to talk about him, to remind everyone what it meant to lose such an incredible person from this earth! I wanted to write down all of my memories of him, and to leave a record for the boys before time made me forget the details. But I found that it was too painful to think, let alone write. All I wanted to do was to go with him – my life seemed to suddenly stretch out very long ahead of me. My grief was a black hole, swallowing me up completely. I stopped enjoying my boys, my friends, my work. I put on a brave face so no one would worry overmuch or hassle me about going to grief therapy. I was indignant - what could a therapist possibly tell me about illness, death and loss that I didn’t already know? How could a stranger possibly understand how special our life together had been, how rare and incredible Andrew was? I knew I just had to go through it on my own.

I did my work and paid my bills. I somehow sold my house and moved us to a new town. I listened to Andrew’s voice in my head, guiding me through all of my responsibilities each day, but as soon as I put the children to bed at night, I would fall on the floor and drown myself in wine and bitter tears. I cried for a year straight, until I simply hadn’t any tears left.

And then with time the darkness began to fade. I was finally able to think about Andrew with happiness as well as sadness. I was starting to create new memories with my boys and our friends, and life seemed like it might be ok again.

And then suddenly, by chance, an old friend re-appeared into my life. He was also suffering a loss of a different kind, and in our mutual vulnerable states we stumbled into something beautiful and real and overpowering. It was intoxicating to be so happy again after so many days and months and years of sadness. I felt a real spark for life again – I wanted to have adventures and laugh and bathe in the love this person was offering. And so I did -- and have enjoyed every moment. And I’ve decided to leap, head-first into a new life with this man, who is so very kind and sweet, and it’s terrifying and thrilling, and hard and easy all at once.

I recently revisited some old Facebook posts from the weeks after Andrew died. Friends left so many beautiful comments and wishes, most of which I was too numb to properly appreciate at the time. Someone said that Andrew would be around me always, and that he would send laughter and light back into my life. And I think that’s been true, but sadly not everyone is happy about my new relationship. Certain friends and family have sent clear messages through their words and through their silence. I’m not sure if it’s because they feel that I’m being disloyal to Andrew, or worry that it’s too soon, or think I’m too happy and they liked it better when I was sad…It’s strange to encounter those kinds of reactions and I’m always slightly jarred when it happens. Some days it can fill me with irritation – do they really think that Andrew and I didn’t have multiple, private conversations about what the future should hold for the boys and me after he was gone?  My God -- any one who understood Andrew even slightly would know that he’d be furious if he thought the boys and I were still crying and moping around all day two years later. He’d tell me to get my shit together and for us to live our lives. He was not a martyr, by any stretch, and wouldn’t bear for me to be one. But I get it too – change can be upsetting to people, and what they perhaps don’t understand is how the boys and I never stop remembering Andrew. How we talk and reminisce, and share funny stories, and visit favorite places. He is a constant presence in our lives. I want the boys to know that they can always talk about their dad.

And thankfully, there are others – those friends and family who have been so generous in their words and thoughts – so happy to see the boys and me happy again. I feel their warmth and I embrace it. Life is so fleeting – we’re only here for the briefest speck of time. We have to grab joy when it comes, recognize our good fortune and enjoy the hell out of it. Andrew taught me all of this, of course, by how he lived and how he died.

This will probably be the last post on this blog. The blog is so explicitly tied to Andrew’s illness, and I don’t want that to be the defining feature by which we remember him. He lived 50 beautiful years -- he was only a cancer patient for one. So thank you all for reading and remembering, and celebrating Andrew’s life, and hopefully celebrating the new life that the boys and I are forging. We are ever grateful!

Linda

Silence

Right after Andrew died I started saying that I felt like half of my own self was gone. We were so connected and the feelings brought about by his absence were beyond peculiar -- I definitely did not feel any sort of normal. Eight months on, I still feel strange most days -- as if I'm continually forgetting to do something important, but can't begin to remember what it is.  It's a very weird way to go through life.

People keep telling me how lucky we were to have shared such a deep and profound love. And I suppose that's true. It would surely be torturous to exist day after day in a loveless, or even tepid sort of relationship. Though our marriage went through the normal rocky periods, we were unfailingly smitten with each other, and so always managed to find our way through. I'm sorry to think that there are probably many people who never get to experience that deep connection with another person.  I'm sure I should be feeling incredible gratitude for the time that we had. But right now I'm not feeling so grateful. I'm feeling greedy. I'm greedy for more delicious years with my husband. I'm greedy for his humor, his humanity, and his kindness. Greedy for his great looks, his fearlessness, and his beautiful mind. But I'm mostly greedy for his conversation. Oh, the conversation! Seventeen years of the funniest, most intelligent, insane, and interesting conversations possible. This will come as no surprise to anyone who spent even a small amount of time with him.  Wherever he was was usually the most interesting place to be.

Andrew was intensely curious about the world -- he quizzed people endlessly about their lives, and their thoughts, and he especially loved to provoke their reactions! He read constantly and was incredibly well informed about subjects he found interesting. He could debate anyone and generally would. My sister-in-law once became uncomfortable, thinking we were fighting -- I had to say "No, this is just how we talk! We're animated, we debate, we argue." But the debates were never angry or hostile - they were full of passion and love and vigor, and life.  The part of our day I most enjoyed was evening, after work and dinner. The boys would finish their dinners and head off to play -- Andrew and I would stay at the table for as long as possible, finishing our wine and just talking about everything and nothing at all. Such bliss.

Our conversation -- constant, thrilling, hilarious, ridiculous, inspiring, and never, ever boring -- was our unique way of being in the world together. Now, I find that I go long stretches each day without ever speaking a word. The silence in the evenings after the boys are asleep can be be positively deafening. The conversation has disappeared with my husband -- I've lost half my own self, and don't think I'll ever be quite whole again.

Around our table -- the site of so much great conversation.

Challenges

The challenges of widowhood are many – emotional (obviously), practical (my contractor/handyman might as well keep a room here – he doesn’t even listen to my messages anymore, he just picks up the phone immediately to find out what new household calamity has befallen me). But the hardest challenge thus far is figuring out how to keep my children on an even keel. My little one seems well – he requires only cuddles and kisses and smiles, which I’m happy and able to bestow upon him daily, but my older son is a different matter. Jack is eight. He was very close to his dad and is very like his dad – highly intelligent, creative, complex, and stubborn as the day is long. As Jack said to me yesterday, “I make my own decisions.”  Children don’t experience grief the way adults do. They may feel sadness, but quickly compartmentalize it and move on. They have to, to survive. But they still manifest their grief, just in different ways. 

Jack has always been a challenge to parent (not always a negative, mind you). He was a very colicky baby. Friends used to shake their heads in sympathy as Andrew and I would use every tool we could think of to soothe his cries. I remember a legendary evening at a friend’s party when Jack cried from the time we arrived until we finally took our leave 3 hours later, after failing to comfort him. He cried for 3 hours straight! And we tried everything – feeding, jiggling, walks around the block - nothing could ease this poor child’s discomfort.  This was a pretty regular occurrence, but as new parents we really didn’t know any better – aren’t all babies like this?  When sweet and contented Ewan came along we realized just how very different children can be. As he grew, we realized what a smart and fascinating and complicated kid Jack is. He’s very sensitive; he feels things deeply and reacts with strong emotions. His mind is quick, and you can’t get anything by him. He can be bossy and difficult, but his heart is like a soft and squishy peach.

Lately, Jack and I are butting heads pretty good. I remember reading an author (possibly David Sedaris, but can’t remember) talking about how his parents didn’t parent so much as manage their children. I’ve since tried to be conscious to avoid this, but I admit I don’t always succeed. I find I do manage them – “get your shoes on, get your teeth brushed, we’re late”.  A common refrain.  And frankly, Jack needs a lot of managing. But he’s also a little boy who’s just lost his father, and I’m becoming painfully aware of the need to do better by him.

So we’re getting some help. Overdue, maybe, but I’ve never been to a therapist before. Andrew was always fairly anti-therapy. His thinking was, life is difficult – you just get on with it, and stop bitching. His father went through the Great Depression and World War II. That generation was all about getting on with it. When you’re watching your friends get blown to bits, you understand life and death on a different level and you don’t spend too much time feeling sorry for yourself. I always admired Andrew’s ability to face difficult situations and just get on with it.  Even during his illness he never once asked “why me”. Wrong question, he said. Just, how do we address it?  His bravery in the face of losing everything was remarkable, even to the end. But now that he’s gone, I’m struggling. Andrew was exceptional with Jack. I am less so. My greatest fear is having one of my sons grow distant from me.

I recently visited with a very nice family therapist who gave me some great, specific tools to use with Jack. He’s also going to meet Jack soon and try to get a better idea of what’s going on in his head.

These are things I never thought I would have to face. When I was married, I often said “ I wouldn’t ever want to be a single parent – wow, it’s so hard with two parents, can you imagine doing this on your own?” And I meant it. But life is not always kind, and here I am – desperate to help my child navigate life without a father, but with little real knowledge about how to do this. Unfortunately for my children, my all-consuming grief at losing the dearest person in my life has kept me from doing much beyond getting through days. But I hear Andrew’s clear voice in my head telling me to get on with it. Find a way to survive. Find a way to give extra support and love and attention to our children, who don’t yet have the tools. 

About a House

Today the sale of our Maple Avenue house became official.  Those who know us and have spent time at our house understand why it was impossible for me to live there after Andrew had gone. His presence was huge, and the emptiness in the house was more than I could reasonably bear. Though we owned the house for a mere seven years, it’s difficult to overstate what the place meant to us. This 110-year old, Victorian fun house on the river was our absolute refuge and sanctuary. We arrived here a bit battered from too many hard years in the city, ready to start a new beginning in the countryside. We had a 9-month old infant and very few belongings to fill the many, many sunny rooms. Over time, and with a lot of paint and sweat we made it our own beautiful nest – a love letter to each other.

Our babies were raised here, among the tomatoes, cucumbers, and watermelons. They learned to walk and swim and play here. They learned to identify various flower types in the rambling gardens I planted, and how to distinguish the weeds from the seedlings.  They helped us plant the birthday roses, mother’s day roses, the flowering shrubs and fruiting trees – so many gifts of love from my husband, too numerous to count. They helped their father hammer and saw and weld things in the beautiful old carriage house that bore the inscriptions of previous owners from a lifetime ago. And we all delighted in the secret places and spaces the house revealed to us. We cooked and ate delicious food here, we made cozy fires in the winter, and swam like fish in the summer. We entertained many, many friends here -- friends that we are so privileged to know, and who took care of us through Andrew’s illness in ways I never could have dreamed of.

We loved each other passionately, talked endlessly, laughed and cried, and rarely ever fought in this house. I helped my beautiful, young husband make his journey to the next life in this house. And as I watched him leave us, I gave a tiny prayer of thanks that his last years here had been so very, very happy.

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