Sunday, May 15, 2011

Crazy lady

I stopped publishing to the blog months ago in part because I felt I was getting redundant. How many times and how many ways can I say I miss Ron? I was boring even to myself, with nothing quite salacious to report. I'm going to skip over a bunch of milestones (holidays, birthdays, one-year anniversary, Neiman's last call sale) because you could probably write your own scripts and they would be--more or less--accurate. We have been happy, devastated, grateful, frustrated, hopeful, exhausted, defeated, and invincible--often, inexplicably, at the same time.

As we continue our best to show up for life, things I didn't anticipate still catch me off guard.

Example. This morning, our town held a road race for families. It would be Mai and Tal's first run. Because of their ages, they were in different races and I couldn't run with them. I asked a friend who was running with his own son to run with Tal, and Mai would be running with a small pack of classmates from school.

Tal happily took off with the Dad and friend, and then was out of sight until he emerged again near the finish line. He was all smiles and quite triumphant, but I learned that he got an aerial assist mid-course. Tired and not wanting to run farther, Tal was carried part of the way by the Dad, who was still running with his own son.

Mai was eager to run with her friends and started strong, but found herself alone when the pack pulled apart. Mid-course was invisible to me once again, but by the time Mai emerged, she was holding hands with another Dad, a friend, who had adopted her along the way. He ran with his own daughter in one hand and Mai in the other, periodically squeezing her hand to encourage her onward. It was so unexpected and sweet that I disintegrated when I saw them (but not before I snapped a photo). That crazy lady crying on the course? That was me.

Ron, I hope you can see what good care the world is taking of your kids. They will grow up feeling that people are lovely and generous and kind. They will know grace, and have faith that the world will not let them fall.

To those Dads today, thank you for taking care of our kids and helping them feel proud of themselves. Your kindness liquefied me, but I'm so grateful for it.

Friday, November 26, 2010

Scandalous

Being an overachiever and well steeled, I thought I could make it through the usual pitfalls—holidays, change of seasons, and Toy Story 3—without crazy tears. I did not. I am a common bereavement statistic. At 2am on the eve of Thanksgiving, hot and messy, I was searching for a friendly voice to be awake. For the first time, Facebook let me down. Friends online? Zero.

But joy and sadness can coexist. I have to admit that my first Thanksgiving without Ron was one of the nicest ever. Is that scandalous? It goes without saying that our first choice would have been to spend the day with Ron, but since that wasn’t in the cards for us, I decided to abort plans to stay home alone with my memories [yes; that was indeed my first plan] and joined good friends and neighbors nearby. It was virtually impossible to feel sad surrounded by such love, generosity, humor, and good cheer. The food was delicious, the settings beautiful. One of the gifts Ron left me, in witnessing all that he suffered, is to cherish goodness when you experience it, and to drink it up for those days when your glass may be less than full. It is an amazing privilege to be alive. Each joy feels that much more exquisite, and this Thanksgiving day was so wonderfully lovely.

I have long thought that my friends were particularly sparkly and kind, but I had no idea how much their gifts would lift and sustain me over my darkest days. You all have made it impossible to feel unlucky.

I am thankful for knowing what love looks like and where my home is. The value of joy and people who can make me laugh. A well-crafted cookie. Warm, familiar faces around town. A visit from an old friend. Or a new friend. People who love well. A community of widows who—having experienced death so closely—feel the importance of living fully. And of course, my family, Mai and Tal, and the man I will always see in them.

Happy Thanksgiving.

Thursday, August 19, 2010

Four months

I couldn't fall asleep last night until 5am, which is late, even for little widow me. I stayed up going through all of the thousands of new emails (mostly junk) that have come to Ron's address over the last month, and reading some of his archived sent mail. I cried, missing the familiar tone of his writing. I tossed. I turned. I cried some more, for no apparent reason. I ate chocolate--long after I had brushed my teeth.

Because I've done my requisite widows' lit reading, I was not surprised that our journey in grieving and healing would be non-linear. We are coping well, and then we are not. We are feeling capable and hopeful, and then... so not. It's happened before on the anniversaries of Ron's passing that I've felt the sadness first, and then remembered the date.

This past month, the kids have delighted me with their resilience and strength--their ability to remember and celebrate their father, their compassion for others, and their instinct to live joyfully. On Ron's birthday, we toasted him with strawberry sprinkle donuts for breakfast, rode horses, and capped the day at the Pond. A good day.

I have been initiating efforts that seem to me like a measure of moving forward: sorting through Ron's drawers, giving away clothes, purging furniture, going to the office, and venturing out for fun without the kids. Most of the time it feels natural, but occasionally it feels like my own spin job.

What I miss most these days is emotional honesty. There was no need to edit with Ron. If something was on my mind, I could always share it with him. If I felt the desire to smooch him silly standing at the sink brushing his teeth, I would--shamelessly. If I was annoyed by something big or small, I'd get it off my chest. If I felt desperately needy, fearful, jealous, or sad, I could lay it bare to him and find comfort. There was no need to temper my emotions, good or bad, so emotional honesty was easy.

Living honestly as a widow is challenging. I'm constantly working to be the best version of myself around the kids, and--let's be clear--I'm not naturally that good. I'm stuffing emotions down my throat so I can pass for normal in public, and smiling when I check out at the grocery store. I temper my emotions for friends because they are so amazing and generous and the last time I sobbed about being lonely on the phone, one hopped in the car the next morning and drove four hours to visit, bless his heart. And when he left? I worked hard not to cry like a baby. Gestures of kindness and pleasure feel so deeply satisfying that I sometimes feel aware of suppressing my reaction because it just wouldn't be appropriate. Family friends took us on a wonderful boating adventure, and I was so moved to feel the wind on my face. If I had really let myself go, those few silent tears rolling down my cheek could have quickly evolved into the ugly cry. It's easier on a blog, but in real life, truly, you don't want honesty from me.

And I'm not on this roller coaster ride alone. I found dear little Mai hiding under the sheets this week, sobbing in the middle of the afternoon. Said she missed Ron. I did, too. We had a good cry and cuddle, and then moved on.

In case you think this post is all doom and despair, it is not: I've lost another 5 lbs. Unlike the caregivers' diet, the widows' diet is effective. It's like the heroin diet--no sleep and no food--but without the heroin, which makes it eminently more affordable on a widow's budget. I'm thinking of adding yoga once the kids start school.

Signing off with honesty made easy online: I love you. Thank you for reading. And caring.

Sunday, August 8, 2010

Your gift

Ron died at home in bed on a Monday, just before midnight. I held him until morning. The funeral home took him away Tuesday. I have no memory of Wednesday. Thursday morning, we escorted Ron from the funeral home to the crematorium.

Against the advice of trusted friends and family, I decided to take the kids. I hardly felt sane those first few days, but I felt strongly that including Mai and Tal was the right thing for us. Plus, I gave them the choice, and they wanted to go.

Ron and I had matching Life is Good shirts with “Honey” printed on the front. Never a suit-and-tie man, I dressed him in his Honey shirt so everyone who handled him at the funeral home would know he was beloved. Mai tucked a little bear with hearts under his chin “so he [had] something to cuddle” on the next leg of his journey. The three of us pushed his coffin from the parlor to the hearse.

For years, Ron and I had a running joke about how I would one day wheel him around in his old age, pureeing all his favorite meals so he could enjoy them through a straw. But we simply weren’t imaginative enough to take the sketch any further, and never had I anticipated pushing the coffin that would eventually replace the wheelchair.

Our minivan followed the hearse for nearly an hour. I think we played “I’m thinking of an animal...” in the car. 

At the Linwood Crematorium, the kids and I helped move their father from the hearse to the retort. Mai and Tal pushed the button to start the flames. They understood that the process would take the water out of their father’s body and leave us with ashes and bone fragments called “cremains.” I knew there would be questions about how Daddy could fit into a smallish box, so I used the analogy of a grape becoming a raisin. 

In life, it was always an event when Dada came home. Ron would call as he was leaving his office, and during the warm summer months just before the cancer returned, the three of us would wait in front of the house, riding bikes, climbing trees, or doodling on the bluestone. When Ron’s car pulled into the driveway, the kids would jump up and down cheering, waving ferociously and throwing kisses. It was a rock star’s welcome. 

So when we returned to Linwood that afternoon to pick up Ron’s cremains, the kids were happy. We were excited to bring him home one final time. We instinctively hugged the box, and said that it felt warm, just like Daddy. Before we buckled back up in the car, Mai and Tal eagerly asked to open the box. My stomach hollowed, but I didn't want my hesitation to dampen their fearlessness, so I smiled and enthused, “Let’s do it!” There in the backseat, we pulled away all the layers and fingered the still-warm ash and bone fragments through the clear plastic bag. Daddy.

Mai insisted on holding him on her lap, and as much as I wanted to cradle him myself, I relented. After nearly 14 years together and 18 months of illness, bringing Ron home to rest was the last physical thing I could do for him. It was a great privilege.

A few days later, Mai told me she showed Ron's cremains to a friend. Alone in the bedroom, those fearless little girls removed the outer box--much heavier than one might expect--shook out the interior box, and opened it to reveal the clear plastic bag. Mai explained the cremation process, beginning with the removal of the water and ending with the raisin.

Tal is equally at ease with the cremains and the story line. He's never asked if Daddy is coming back, and if you ask him where his father is, he'll tell you in his halting toddler voice, "He is in our heart."

One of the challenges of parenting alone is trusting an inner voice. Ron and I had a history of choosing less popular paths, and together we always offered the nod of agreement and reassurance to whatever kooky idea the other proposed. Now, I have to listen for that voice on my own, and have faith in what I know to be our shared instinct.

Mai and Tal survived. I felt triumphant.

I couldn’t articulate why at the time, but I felt absolutely that the kids needed to be present and involved in all parts of their father's life and death. Then I found this, which said it beautifully:

"What you resist persists, but what you befriend, you transcend."

Tomorrow is Ron’s birthday. 

Sweetie, my gift to you is to raise our children fearlessly; to imbue them with enough love, resilience, and strength to embrace life’s highs and lows and feel equal to anything. Also, a baked stuffed lobster—but I’ll have to enjoy it for you.

Happy birthday, Love.

Sunday, August 1, 2010

Will it end in tears?



I've always been drawn to text-driven art, and my friend had this wonderful piece hanging in his New York apartment. It reads: Will it end in tears?

Two years ago, I would have answered a resounding NO. I would have ignored the clich├ęs about all good things coming to an end and sung along to "only the good die young" without fear.

Ten years ago, I stood with Ron overlooking the water and recited--enthusiastically--"til death do us part." We said it smilingly then, and only understood it to mean that we'd be together forever. How could we comprehend that one of us would die and the other would grieve?

Beneath the Brooklyn Bridge, I saw a newly wedded couple posing for portraits, their shiny faces full of promise and bliss.

Will it end in tears? I sincerely hope so. I hope you've loved deeply and wildly and recklessly enough to howl at the moon.

Tuesday, July 20, 2010

Three months

The first week after Ron died, Mai asserted that there were some good things and some bad things about Daddy dying. I had to take the bait. “What?”

“Well, the bad things are that I’m really sad that I’ll never get to spend time with him again. But the good things are that he won’t have to take shots anymore, and he won’t have to sleep at the hospital anymore, and they won’t have to take blood anymore, and...” the list went on and on, as if the sheer quantity of the good things could compensate for the enormous gaping hole left by the one bad thing.

Mai has become a very careful listener of song lyrics. The other day, James Taylor’s version of “Only One” was playing on the iPod and Mai remarked, “Mommy, I really like this song because it makes me feel like I can still have a lot of love with just one parent.” Mai consistently digs deep to come up with the most positive spin she can muster surrounding our great loss. The actual refrain from the song is:

“You are my only one
You are my only one
Don’t be leaving me now
Now you’re my only one.”

Mai also commented on the lyrics of Les Miserables’ “I Dreamed a Dream” which I have been playing as part of my malaise mix. She opined that the words aren’t really happy. What’s not cheery about:

“I had a dream that life would be
So different from this Hell I’m living
So different now from what it seemed
Now life has killed the dream I dreamed.”

Joking aside, three months later, I think our family is doing OK. We all still have our very sad moments, but we also have a lot of joy and love, which is absolutely what Ron would want. 

I’m stealing a George Bernard Shaw quote I found on another widow’s blog: “Life does not cease to be funny when people die any more than it ceases to be serious when people laugh.”

Tal, at age two, has always understood the permanence of his father’s death, but doesn’t yet realize our situation is not universal. During a playdate, his friend was crying and Tal threw in his two cents: “I think he misses his Dada.” In the early weeks after Ron’s passing, the structures Tal built out of his magnetic tiles were mostly hospitals. Now, they’re more often horse stables or dog houses. It’s progress. Mostly, Tal is still his exuberant self. 

In that way, Mai and Tal have saved me. It’s so clear that there’s just one way for us to play the hand we’ve been dealt, and that’s to celebrate life and to live as beautifully as possible; to surround ourselves with joy and great love, because that’s the way we lived with Ron and he would be so heartbroken to see the cancer take that away, too. 

So we are enormously thankful for those of you who are committed to joy, and who have the capacity to live it. You are the beautiful souls who know that peace and happiness are choices, and that laughter is as life sustaining as air and water. 

Tuesday, June 1, 2010

Slideshow


Our dear friend Jim created this slideshow for Ron.
It makes me happy.

Click here to view.

Wednesday, April 21, 2010

Too soon

My sweet Ron took his last breaths late Monday night. We are beginning to plan a memorial celebration in his honor at our home this Saturday.

Sunday, April 4, 2010

Party for Ron

Ron's cancer has spread to his liver and the disease progression is rapid. We know it's no notice (and Easter!) but we hope you can join us at our home this afternoon between 4:00-6:00pm. Ron would love to see friends and family while he's home. We'll have dessert out in the yard and games and tennis rackets for the kids. Just bring yourselves. It should be a beautiful day.

Much love,
Ron, Ha, Mai, and Tal

Sunday, March 7, 2010

long, overdue update

My sincerest apologies for not posting since January. A lot has happened since then, which I will explain, but I think I hit a wall where it just became too much and too long to deal with all that was being thrown at me (and us). As I explained in my last post, this process just always continues. Everyday brings a new issue, new information, progress, failure, joy and sadness. It is difficult to explain, and I never would have understood it myself a couple of years ago, but it is physically and emotionally exhausting and sometimes feels like it will never end. To coin a phrase from a Broadway show years ago (I am really showing my age here), "Stop The World, I Want To Get Off" is sometimes how I have felt over the past few months. The news, the process, the steps to get from A to B, sometimes feel overwhelming and so I think I just shut down a bit and grew tired of talking about it all of the time, which is why I stopped writing and took a break.

All that being said, this blog has been an important part of this journey for Ha and me, and I cannot express how much I appreciate all of you who take the time to read it and the support you have all provided. It is also an important piece that I feel privileged to pass on to Mai and Tal. Regardless of what happens, whether I live 1 year or 50 years, to have a journal of their Dad to read from years ago, I hope will be something they can find meaning in.

So... my medical update. In January, as I was approaching my 100 day marker, I was not feeling well. Lots of stomach pain, fatigue etc. It persisted for some time and coupled with the clotting issues I was having, my doctors decided it might be best to get a ct-scan to see if my disease might be returning. What they discovered is that all of the disease that I had prior to my transplant was gone (good), however, there was new growth that was already occurring and it was in multiple locations (definitely bad). I believe my doctors were as surprised as I was and they were quite candid with me, expressing that this was not the result they were expecting nor hoping for. It appears that the radiation and chemo prior to the transplant did it's job and eliminated what I had leading into the transplant, but my disease relapsed very quickly and did not allow enough time for my new immune system to strengthen and fight any new disease. The concept of the transplant is to eliminate and then build a new immune system that will fight back against any new growth, but my disease returned in less than 90 days. My immune system was about as strong as a infant's, and not developed enough to do its job.

So, the plan they have developed is to put me back on more chemo cycles to reduce the disease, essentially buy some time, and allow my new immune system more time to strengthen. They are theorizing that if they can keep me stable for many months, that eventually my new system will gain enough strength to begin doing what it is supposed to be doing...fighting the disease. As of today, I have undergone 2 rounds of EPOCH chemo, the same chemo I had prior to the transplant and will begin my third cycle on Thursday 3/11. If EPOCH is found to be ineffective, there are two other "cocktails" they would alternatively try. So far, the results have been positive. They ran a ct-scan last week and it appears that the largest lymph nodes have reduced in size, the smaller (but still enlarged) nodes are stable, and there is no new growth. The side effects have been considerably worse this time around though. They had explained that because my immune system was not as strong as prior to my transplant, I might not tolerate chemo as well, and that proved to be the understatement of the year. I now realize how lucky I was previously, experiencing minimal side effects throughout chemo and the transplant itself. The past few weeks have been filled with fevers, significant pain, blood transfusions, multiple day hospital stays to stabilize my blood counts and eliminate fevers and just general misery.

It has been hard on me, but equally hard on Ha, Mai & Tal. Ha has had way too much thrown on her plate, but continues to keep her strength and kindness, caring for me, Mai and Tal, managing our household, paying bills and trying to keep a sense of normalcy in our home. Mai and Tal are getting old enough to understand more of what is going on, and at times it is heartbreaking. Having them pull my legs as they say they do not want me to go back to the hospital, is sometimes almost too much to bear. Mai now understands that if my fever spikes above a certain number, I am required to check back in to MGH, so she is constantly offering to bring me drinks and food to "help me get better" so I can stay home. Tal is her constant side-kick, mimicking Mai's every move and his favorite activity is to bring me Cheerios in bed when I am napping (although he tends to eat most of them himself). They are so innocent and sweet and none of them (Ha included) deserve any of this.

I am doing ok but realizing the battle is getting more complex and more difficult with each new day. This has been extremely difficult since day one, but as it continues to progress, it also becomes more frightening. When you feel sick, you are constantly reminded of your plight, which is a whole other mental challenge to fight. I am a "glass half full" kind of guy and always have been, so as long as we are seeing progress, I remain hopeful. But, I do recognize the difference of my current situation as compared to 6 months ago. I have now relapsed twice, my disease is a huge question mark as far as treatment and success rates, and the disease is no longer localized. On the other side, I am working with about the most capable team of doctors you could find on this planet, we are seeing some progress, and I am one tough, determined guy who has three beautiful treasures at home that I would do absolutely anything for. So the battle continues, each day is a gift, and we will continue to gain strength from the love and support we receive from all of you.

Ron

Thursday, January 14, 2010

Day 72

I am getting closer and closer to that 100 day milestone, and we have our fingers and toes crossed that all continues to go well for me and for our whole family. One of the most common topics discussed lately has been our battle with not just the physical side-effects, but also the psychological side-effects of this very long process. It is hard to explain, but the stakes are obviously so high for all of us, and the waiting has become an extreme challenge. Additionally, after the 100 day marker, there are still going to be a number of risks and dangers that we will need to deal with, so some days it just feels like this process will never end. But we push forward and take every day as a blessing, hoping that these days string along and eventually join together into 1 year, then 5 years, and then 20 years or more. But it is difficult, because Ha and I are generally not very patient about anything!

We had some scares last week, as there was some concern that I had more blood clots, which landed us an evening trip down to the MGH emergency room. But everything turned out to be clear and it was an apparent false alarm. The emergency room was quite an experience. Hundreds of people all looking for various forms of help. Some young, some old... the emergency room does not discriminate and it was fascinating to see people from all walks of life traveling through there. By the time we left at about 11pm, they were so crowded, there were stretchers lining the hallways with patients waiting, and there was simply no place to put them. It was quite a scene and we were glad to go home.

Mai and Tal are fully back into their school routine and really enjoying all of their activities. They especially love Tuesdays and Thursdays when they both go together and this past Thursday, they had "Animal Adventure" come to their school. They were able to meet and touch a number of animals, and they claim they touched a tarantula, which I was (and still am) in disbelief about. Brave kids... braver than their own Dad! Ha has taken a tiny bit of time to try some sewing projects, although she is still swamped managing our household, so the more serious sewing projects will probably come when I am feeling better and doing all that laundry, dishwashing and grocery shopping that I am going to owe her!

On a final note, my thoughts today are with the victims in Haiti. The earthquake was devastating and I hope they are able to receive aid quick enough to save the many hundreds of thousands who are affected.

Take care,

Ron

Friday, January 1, 2010

Happy New Year

It has been a busy couple of weeks and I did not realize how long it has been since I provided my last update. Generally, things have been going well and I continue to feel healthy on most days. Channukah, Christmas, Mai's birthday and then New Years all crowded into a 2 week period always makes the end of December a very busy time for us, but all of the activity has been a nice diversion. We lit the candles each night for Channukah, exchanged gifts on Christmas, and celebrated Mai's birthday and rang in the New Year together yesterday, thankful to be home and celebrating together as a family.

Tal's fascination with horses has continued and he now has many more plastic and stuffed horses to play with (thanks to the holidays), and our beautiful daughter Mai is 5 years old (going on 10), and so excited to be all grown up. Ha continues to keep it all together, juggling a huge list of "stuff" (we always wonder why we have so much stuff to manage) and I continue to offer my driving skills and waiting skills when I can, looking forward to the days when I can actually start to do things around here.

On my last weekly checkup, they found two blood clots in my leg, which does occasionally occur after the treatment I have endured. So, I am on bed rest until Sunday and back to giving myself 2 shots per day (blood thinner) to reduce the clots and stop more from forming. Otherwise, my last two checkups have been fairly uneventful.... blood counts and liver enzymes have been stable, and it appears that the graft vs host disease is greatly reduced for now. I am at day 59 today and Dr. Chen confirmed that if all continues to go well, I am on track for release of many of my restrictions at day 100... very welcome news for me, as my latest excitement has been keeping our bird feeders filled.

Wishing you a very happy New Year and all the best for 2010.

Ron

Saturday, December 19, 2009

Day +46 - Coffee

I accomplished my very own milestone this week... no discharge papers or follow up manuals list this milestone, but for me, it was self-imposed and significant. I started to drink coffee again. After 2 months without any java, that warm, brown, slightly bitter drink tastes like heaven. Green tea has been a nice change, and I have tried them all... blueberry, pomegranite, mango etc.. but coffee is my true love and it is great to have it back in the mix.

I am now scheduled for doctors visits just once per week, which is terrific as I was originally told I would need to visit 2 - 3 times per week for the first few months post transplant. Dr. Chen feels as though for now, the GVHD is under control. I had my weekly follow up on Thursday and blood counts all looked good, liver enzymes are stable (still slightly elevated) and my rash appears to be much improved. They have slightly reduced my Prednisone again (to 40mg / day) which is a welcome relief. All other meds remain unchanged.

I am still under careful watch for infections though as the medications I am taking further reduce my immune system, so as originally told, I must stay confined to my home with limited visitation, however, I am able to take walks outside and can drive a car.. another major milestone accomplished this week, but I just cannot be around people due to possibility of infection. So, I can drive, but I just cannot go anywhere, which actually translates into... I can drive Ha places and then wait in the car. But as I described to her, I actually have grown to enjoy this. It allows us to spend some time together, and after being confined to a hospital room for a month and then our home for another month, sitting in a parking lot, makes me feel like an indoor cat, watching birds fly around outside, which has been oddly appealing these days. :)

Our house is full of all types of holiday festivities. We have been lighting a menorah each night and Mai and Tal love predicting which candle will burn out first. We have a number of Christmas presents all wrapped up, ready to open on 12/25 and I often hear Mai and Tal singing the Dreidle song and Christmas Carols throughout the house... we are truly managing a multi-ethnic household and it seems to be working for now.

Things here are still a bit upside down, but Ha has been juggling our household responsibilities with such grace and efficiency, it feels like we are starting to regain glimpses of normalcy. With barely a minute to spare each day, she did however manage to purchase a rare antique swiss made Elna sewing machine online and claims it was the best deal she has ever found. If you have never seen Ha's antique sewing machine collection, and are interested... I guarantee you will be impressed. All we need now is an antique barn to house her growing collection, and the dream would be complete.

So, this week has progressed well. We remain careful, and cautiously optimistic, but we are enjoying our time together and hoping our good luck continues. Thanks again for all of your well wishes and enjoy the snowy weekend.

Ron

Friday, December 11, 2009

Day +38

My follow up at MGH today confirmed these crazy, mind altering drugs are working, as the skin rashes seem to be improving and my liver enzymes continue to decrease. On the positive side, I have learned how to operate this week on 2 - 3 hours of sleep each night, and I have been eating outrageous amounts of good food (and not really gaining any weight). On the negative side, I probably should be getting more than 2 - 3 hours of sleep, and I probably should be gaining weight (as I am currently still about 20 pounds lighter than my pre-surgery weight).

Dr. Chen is pleased with my progress and feels that for now, we have the GVHD under control, but he did acknowledge it can flare up again at any time, for any reason, so I am not entirely in the clear. For now, I am starting to feel better physically and emotionally, which is a welcome relief, but I must continue with the onslaught of multiple drugs, which will most likely keep me wired and exhausted for the next couple of weeks. They did allow for a very slight reduction in my Prednisone, which is a step in the right direction, but evidently, they need to reduce the dosages slowly, so it is most likely going to be a month or two before I see any real marked improvement with the side effects of all of the drugs.

I have been able to spend more time with Mai and Tal and they are now able to give me cheek kisses (my idea, not doctor's orders) and Mai says kissing my cheek makes her feel like we have our normal life back. It breaks my heart to hear her say that, but also makes me feel so good at the same time.

That is all for now. Despite some continued side effects, in some ways I feel like I have turned a slight corner over the past few days and find myself smiling a bit more and enjoying my time at home. As Ha and I keep saying to each other.... if we can just have our old lives back, we would be the happiest people alive. Doesn't seem like too much to ask.

Thanks again for all of your thoughts, funny emails and well wishes. You have all made me realize how generous people can be. Have a great weekend.

Ron

Sunday, December 6, 2009

Day +33

I had my follow up at MGH on Friday and my liver enzyme counts decreased a bit, however they were still quite high, so the doctors prescribed an additional new drug to try and bring the numbers down further. The steroid (Prednisone) appeared to be working but they felt that I was going to need additional help to bring the counts down to a reasonable level. This new drug (Mycophenolate) is even more powerful than the Prednisone and packs some not so pleasant side effects, so the past few days have been difficult. The combined effect of these drugs is similar to the sensation of drinking 20 cups of coffee per day, so I am constantly tired, yet cannot sleep... a vicious cycle which I hope will be short term. I have a follow up appointment tomorrow and we should learn more. The hope is that the counts continue to go down, so they can wean me off of these drugs as soon as possible.

Additionally, the symptoms of GVHD have continued. The original rash on my chest and back has improved, however it has really escalated on my face and head and so the net effect is about zero. Specifically, the skin on my face, ears and eyes has turned bright red (looks like I have been enjoying a vacation in the Sahara Desert, and forgot my sunblock) and I have what Mai affectionately refers to as "elephant ears", as my skin has really thickened and dried out. This is all pretty standard stuff for the skin version of GVHD, and again the hope is that it stays localized on my skin and does not progress internally.

At 33 days, I am exactly one third of the way through my first 100 days. The 100 day mark is significant as many of the restrictions I am presently subjected to will be lifted. I will be able to start eating a more normal diet. I'll be able to spend some time in public, which opens the door to restaurants, movies, supermarkets etc... all simple activities that I have taken for granted for the first 45 years of my life. Now, a simple dinner and a movie with Ha, or a visit to the aquarium with Mai and Tal, are completely out of the question, and so these are things I think about and really look forward to. How my life has changed in such a short time.

Everyone in my house is now healthy, so I have been able to spend more time mingling with Ha, Mai and Tal, which has been nice. I have learned that Mai is pretty good at Sesame Street Rumba (a card game we play often and she beats me regularly). And Tal, at the age of 2, has learned the full alphabet, and so he can now successfully complete his alphabet dinosaur puzzle with very little help from Dad, which he does several times per day. Ha continues to amaze me with her ability to keep things going and provide support to me in ways neither one of us ever considered 9 years ago, when we recited to each other "in sickness and in health". My only fear is that I am setting myself up for a lifetime of doing laundry and cleaning dishes, based upon the inequity of our situation right now. I am going to need a strategy for this later.

I hope you are all enjoying the snow and I will report more when we hear.

Ron

Wednesday, December 2, 2009

Day +29

Not much to report here (which I am very happy to report!). The prednisone has been doing exactly what it is supposed to... I am incredibly hungry all the time, I am sleeping odd hours, and my rash appears to be settling down, or at least not getting any worse. I had a follow up appointment on Monday and everything looked ok except that my liver enzymes were high, which could just be a reaction to all of the drugs I am taking, or it could mean that the GVHD may be progressing internally. That is the irony of all of these symptoms I am experiencing... the symptoms could be nothing or they could be very serious and until they try a standard course of treatment to correct, they often cannot predict the severity or the cause. I started taking Ursodiol on Monday, which protects your liver, and then I will return on Friday for follow up testing to see if my liver enzymes are lower. If they are not lower, it will mean a battery of tests to determine the cause of the high enzymes (and trust me, this will not be a fun process).

The good news is that I continue to feel better each day, gaining strength and feeling less pain. Ha has been feeding me well, it has been nice to start spending a limited amount of time with Mai and Tal, and Ha's parents continue to help us in so many ways, taking care of the kids, cleaning and helping out with anything we need. I am still in semi-confinement, with very limited visitation. Infections provoke GVHD so I actually need to be extra careful right now to ensure that the disease does not spread unnecessarily.

I have been keeping busy, working a bit from home (busiest time of the year for us) and watching movies and old episodes of 30 Rock (courtesy of Roku). I took my first outdoor walk this morning (at 6am to avoid the crowds) and so energy permitting, I plan to start exercising every day, which should help with my recovery. That is all for now... feeling stronger and better.

Ron

Saturday, November 28, 2009

Day +25

Ha and I traveled back to Mass General yesterday and after checking my blood, assessing the progression of my rash and then ultimately conducting a skin biopsy, they confirmed I have developed graft vs. host disease. It was further explained to us that GVHD typically starts in your skin (mild), can then progress to your digestive track (medium) and can then spread to organs (severe). As previously expressed, most patients develop GVHD (which is a good sign that the transplant is working). The theory is that if the new grafts are fighting against your body, they are also fighting against any cancer that remains in your body. The challenge for the doctors is to be able to recognize the GVHD, briefly celebrate(!), and then tackle the disease and try to tame it so it does not progress to the medium or severe stage.

The drug of choice for now is a steroid called prednisone, and while it carries it's own dangers, it is usually effective at taming GVHD. I started this treatment yesterday and will most likely continue for the next 10-14 days. Prednisone is a powerful drug and can provoke sleeplessness, incredible hunger, aggressiveness and mood swings. I hope I can avoid sudden urges to wear white tank tops and devour large amounts of meat at 3am.

Ha continues to act in superhuman ways.... in our household of six, 3 are sick, 1 just completed a stem cell transplant, and she and our 4 year old Mai are the only members that are at full strength. I do not know how she does it, but along with help from her parents (who are both sick) she has managed to keep it all together, cleaning, cooking, laundering, serving, chauffeuring and acting as all around team support. She is amazing and don't let her try to convince you otherwise.

A safe and happy weekend to you all.

Ron

Thursday, November 26, 2009

Day + 23

I arrived home on Sunday and while it has been absolutely great to be home, we still have some lingering colds in the house and I have also had some unexpected symptoms so it has been a relatively difficult week. We have done a pretty good job of sequestering me in our bedroom, which is a very comfortable place to be, however I have had terrible headaches and have started to develop a series of skin rashes which they believe may be the onset of graft vs. host disease. Graft vs. host is a funny thing... it is good to develop a mild case as it is evidence that the stem cells are doing their job and fighting against their new body. The problem is that you just want a little, not a lot. If GVH becomes severe, it can create a number of serious complications that create much discomfort and can possibly become life threatening. Most transplant patients develop some GVH, the key is to keep it under control.

Since leaving the hospital last Thursday, we have been back for appointments on Sunday, Monday, Wednesday, and now I have just been informed I'll need to return tomorrow so they can monitor my latest progression. 4 visits within the first week was not what we expected, but if I am developing GVH, the constant watch is going to be important. The rash started rather quietly on my nose and cheeks a few days ago, but just today it has spread and it is now covering a good portion of my neck, shoulders, stomach and back.

On the plus side, before it started to spread today, Ha prepared a delicious Thanksgiving dinner and I enjoyed a fantastic meal at home with my Sweetie. Our short term goal upon entering the hospital on 10/26 was to get me home by Thanksgiving, and we did it!

So we are moving forward day by day on our little roller coaster ride and looking forward to tackling each battle with equal commitment. My continued appreciation for all of the support and love you have provided to me, Ha, Mai and Tal. Happy Thanksgiving to all...

Ron

Sunday, November 22, 2009

Bumpy

Ron caught a low-grade infection sometime in the past few days since his release from the hospital. His temperature spiked to 100.3 (100.5 is considered an official fever for transplant patients), and he's had persistent headaches since yesterday morning. Today he experienced a good amount of vomiting--the first since this transplant process began. The doctor on call suggested we go back to MGH this morning, which we did. They did some blood work--counts are normal--and took some cultures to rule out the flu. We should have results from the cultures tomorrow morning, but the doctor thought it was unlikely that Ron had the flu because he would be feeling much worse. Ron looked incredulous and I could see him thinking, "worse?!"

Ron has been such an atypical transplant patient. He sailed through the actual chemo, radiation, and transplant, but is now hitting his lowest physical days. Pre-transplant, he very rarely had headaches and has only vomited a handful of times in his entire life (a fact he takes pride in given his colorful college days), so these side effects feel unusual. That said, this could be a sign that the donor's immune system is successfully taking over Ron's body. If the donor has allergies, Ron will have those allergies; if the donor gets migraines, Ron will get migraines. If the donor vomits as a typical response to disagreeable things in the body, so too will Ron. Honestly, all we care about is whether the donor's immune system can keep Ron's cancer from coming back; we'd be so grateful to take the migraines over the histiocytic sarcoma any day.

We still have some low-grade colds lingering in our household, but we have decided it would be best to bring Ron home. He and I are quarantined in our bedroom and our kids are quarantined in the back of the house with my parents. One adult ferries supplies to and from the kitchen, and we're maniacal about hand washing and keeping food and utensils separate. As far as exposure, Ron is only exposed to me--the same situation that he would be in at the Best Western--but we have the far greater comforts of home, and I have much greater confidence that Ron's room has been properly sanitized. The homecoming has been tricky, but it's unbelievably soul-satisfying to be under one roof again. We occasionally hear the kids' voices outside the room and Ron turned to me after listening to Mai negotiate a popsicle from my parents and said, "that's worth it to get home."

Huge thanks to our big burly Barn dads who helped us move the kids' rooms to the back of the house. It's been really critical to be able to sequester the kids off the playroom, and we couldn't have done it without you!

And finally, thanks to all of you--family, friends, everyone--for your love and support. Coming from a girl who at one point in her life thought she could do it all (who WAS that girl?), we absolutely could not have done it without you.

Tomorrow morning we will go back to MGH for another follow-up visit with the transplant doctor. These past few days, Ron has had very little energy and I have been far busier than when he was in the hospital, so forgive us if we're out of touch. We'll do our best to keep everyone updated. Sending lots of love--

H

Friday, November 20, 2009

Home (Almost)

I was released from the hospital yesterday after 3 1/2 weeks, possibly one of the fastest stays for a patient who has had total body irradiation, high dose chemo and a stem cell transplant. No fevers, no mouth sores, no major infections and I maintained eating throughout the entire stay. These are not bragging rights as I really just happened to get lucky (although I guess I am bragging), but I am very relieved to have the hospital stay behind us. Making it through the transplant, and getting out is a major milestone, but there is still a long road ahead as the first 100 days post transplant are still quite critical. As one of my nurses so optimistically pointed out to me, I am already at day 15, so only 85 more days to go!

During the next 85 days I am required to maintain a rather strict diet, limit outdoor activity, limit visitors and basically just stay home and allow my immune system to grow. I can spend some time outdoors, but am unable to go into any indoor spaces where there are other people, so no movies, restaurants, malls, supermarkets etc... Once I reach that 100 day mark, they start to ease up on some of the restrictions and by 6 months, I should be back to a mostly normal routine with a few restrictions continuing for about a year.

Unfortunately, we have some colds that have surfaced at my house, so I am not actually home, but am checked into the beautiful Best Western of Concord right down the street, and I will be staying here for a couple of days until the colds are gone and it is safe for me to return. The doctors essentially told me... you really cannot go home, but you also have to leave. Fully understandable though... once a patient reaches a certain point (blood cell counts have rebounded), their job is done and they need you to leave. So a few more days of bad TV and isolation, but I am almost home. I am literally just a 3 minute drive from our house, so Ha is able to visit and bring me food (oh the leverage she has now!), and it is nice to be so close and at least feel like I am back in Concord. One step at a time...

I have a follow up appt on Monday and will be visiting my doctor twice a week for the next month or so. Barring any complications, I am looking forward to an uneventful couple of months at home and will continue to report out here with hopefully really boring news about nothing.

Ron