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

Sunday, November 15, 2009

Engrafting!

There are a couple of great bits of news to report today.....

1. I have started to engraft! My counts started to rise today, which means that the new stem cells are growing. My white blood cell count jumped dramatically from yesterday, so they expect the numbers will continue to rise over the next few days.

2. I am being told that if all continues to go well, I will be able to go home on Wednesday or Thursday! This is fantastic news and would be at least a week early as compared to their original expectation of 4 - 5 weeks (assuming I had no serious complications). They are all scratching their heads over here and are offering to place a plaque over the nursing station in my name, honoring all of the records I have broken during my stay.

I still have some pain and am experiencing various unpleasant side effects, but having avoided any number of serious complications that could have occurred, I feel extremely lucky. Three or four days is still a long way to go though, so I continue to remain cautiously optimistic. I have very clearly learned that in this process, every day is independent of the last, but the last 21 days have gone about as successfully as I could have hoped for.

Once home, I will be in semi-lockdown for the next couple of months with limited visitation allowed, limited diet etc... but I will be home and that will be such a treat. I'll keep you all updated as I learn more. Thank you to everyone for following my progress and providing so much support... it has really helped.

Ron

Wednesday, November 11, 2009

Day +8

Since Ha's most recent post with pictures, I have received a number of emails offering words of encouragement. The top three comments have been #3. You look strong (thank you), #2. Hang in there, you are halfway through (I am and I will), and #1. You have RED Crocs??? Just to clarify... the hospital required us to produce plastic sandals before I was admitted (no leather), so we had a mad scramble to buy Crocs off-season and all we could find was red, although I must say we got quite a good deal on them! And for all of you clever Wizard of Oz fans, I do click them together every day and recite "there is no place like home".

I continue to feel fatigued and have had an upset stomach over the past few days, but this is all to be expected. Thus far, I have miraculously avoided the really serious pain of overall infection, mouth sores, sore throat and fevers. Every day it feels as though my mouth and throat are about to get worse, but I have been staying strong. Despite some pain, I have been able to continue eating and drinking, so I think that has helped. I am not out of the woods yet with fevers though and they insist it is coming. I fire back that I am going to be the first stem cell patient to not spike a fever, and unfortunately, their laughter is not encouraging... we'll see.

My energy level has been really low which has kept me in bed for a good part of the past few days, but I have also been able to sleep through the night which has been nice. Due to all of the drugs they give me, I was having a lot of trouble sleeping during the first 2 weeks. In addition to the regular IVs that run through my body for 20 hours of each day (they unhook me for a few hours each morning), I am required to take about 20 - 25 pills daily. Each one is basically designed to keep me alive during this critical low immunity phase, but I can feel the effect it is having on my body and so sleeping has been tough.

Two weeks to go...

Ron

Post from Mai

Mai wanted to post to the blog today. This is her entry:

"Our house is changing because Mama used to get mad at Tal because he drawed [sic] on the wall but now she's not mad. Our furniture is moved. We got rid of a table, and now we only have one dog. So our house is different. I'm feeling just a tiny bit sad but I know you're going to come home so I feel a lot more happier than I used to be."

With luck, just two more weeks. Godspeed, Sweetie.

Monday, November 9, 2009

Scenes from MGH

I'm sorry I didn't get these pictures posted earlier, but it's hard work keeping the nurses' station stocked with candy. Anything chocolate simply evaporates! Ron's already given you the nitty-gritty on his side effects thus far, and I'll just add that aside from expected pain and fatigue, all the authorities here agree that Ron is doing terrifically well.

We can't believe six days have already passed since the transplant. The stem cells are delivered as a transfusion which takes approximately 45 minutes. Compared to the preconditioning chemo and radiation that Ron has already endured, the transplant itself is a piece of cake. This is a picture of the donor's stem cells as they're going into Ron's body.




The policy is for donors to remain anonymous for one year. After one year, identities may be released. Ron and I can't wait for that one year mark so we can personally thank our donor and let him know what his gift means to us. Wherever he is, we're flying our whole family there (I hope it's Lisbon or Milan, but we'd consider it an honor to meet in Iowa just the same).

The concept behind the stem cell transplant is for the chemo and radiation to kill and eradicate Ron's own blood cells. His counts lower to nearly zero, and then they rescue his body by giving him an infusion of the donor stem cells. In about two weeks, the donor's stem cells should begin producing white and red blood cells, making the blood flowing inside Ron's body essentially the donor's blood, with the donor's DNA. The hope is for this new blood to be more resistant and effective in battling Ron's blood cancer. This is a picture of Ron during the transplant, still smiling.


It's truly amazing to understand what modern medicine is capable of doing. In addition to the actual treatments, Ron also receives a battery of drugs around the clock to manage symptoms and side effects. We won't have any more kids to offer as namesakes, so we're naming future pets after our doctors. If you see any dogs running around Concord answering to Yi-Bin or Ephraim, you'll know where they live.

This is a picture of Ron right after the transplant, and right before he immediately falls asleep. He looks great, no?


Equally amazing is witnessing the sheer strength of the human body to withstand, compensate, adjust, and endure. Ron's body is a virtual battlefield. It hasn't been easy, but Ron is staying strong and raising the bar. The doctors say that many patients remain in bed at this point, but Ron has been able to get up for some time each day, shower, and sit in a chair. Most days, he exercises on the stationary bike. Below is a picture of Ron biking while getting an infusion of red blood cells. That's his trolley behind him with the blood hooked up through his catheter. Fantastic multitasking here.


Infusions of red blood cells keep Ron's energy up. Infusions of platelets keep  Ron's blood from becoming too thin to clot. Ron will continue to receive many more infusions throughout his stay. It doesn't go unnoticed that each bag is marked "volunteer donor," and I continue to marvel at the all the people and all the generosity that have carried us through.

People are good.

H

Saturday, November 7, 2009

Making Progress

Things are ok here at Mass General and I am just completing my 12th day. The past few days have been a little rocky, but I am feeling better today and am encouraged by my progress. I was warned of very painful mouth sores that could occur due to the high dose radiation, but was given a drug called Kepivance that has proven to help some (but not all) patients. The Kepivance has actually helped me thus far and while my mouth is a little sore, it has been very mild compared to what most patients experience. On the downside though, I had a bad skin reaction to this drug, and so for the past few days have had excruciating skin rashes that have covered most of my back and shoulders. Not fun stuff. But the rashes appear to be subsiding, and if I am spared the mouth sores, I have been told I should consider it a very fair trade off. I am still early in this process though and so any number of symptoms could occur at any time.

My blood counts are getting very low, which is expected and so now I am in the critical waiting phase where my body has no immunity and infections could surface. Thus far, my temps have been fine, but today they started to slowly creep up, so the docs have told me I will most likely start running a fever in the next day or two. They are all about symptom management here, and so when this occurs, they will start treating me immediately. Overall, I am in some pain, but things appear to be going fairly well. I keep getting the "thumbs up" sign from all the doctors and nobody seems to be very concerned about me at all, so I can only take that as a very good sign.

On a less important note, the food here is pretty miserable. Ha has been bribing all of the nurses by bringing in left over Halloween candy (which by the way is working I think) and she snuck me in a little Kit Kat bar which (to me) tasted like imported Belgian chocolate. The menu does not change, so after a few days, you start to feel like you are in prison. There is only so much turkey, mashed potatoes and gravy that you can eat... and enjoy. The servers, nurses and docs are all incredibly nice though and that makes a huge difference. Confined to this room, they are my only daily contact to the outside world (besides Ha's daily visits... thank you) and so their kindness and generosity has been truly appreciated.

So roughly 18 - 20 days to go and so far my stay has been difficult but not disastrous. My days are filled with CNN, music, exercise bike and email and it is actually starting to get a little boring. Putting things into perspective though, boring days are the absolute best thing I could hope for. My body seems to be holding up well to what one doctor expressed this morning as "about the most difficult course of treatment we can throw at any patient". So signing off and hoping for 18 - 20 more days of complete boredom!

Ron

Tuesday, November 3, 2009

Transplant day!

Ron received his donor's stem cells today. The infusion lasted about 45 minutes and all went smoothly. He fell asleep almost immediately after they unhooked him, and despite the expected weariness, looked peaceful. I'll update tomorrow with more details and pictures, but tonight I have just enough energy left to brush my teeth and collapse into bed. Sleep well.

H

Sunday, November 1, 2009

Staying strong

Ha wrote a very nice blog about me yesterday and so I took the liberty to research the definition of Superman and here is what I found... "faster than a speeding bullet, more powerful than a locomotive, and able to leap tall buildings in a single bound.  In addition, his immune system protects him from toxins and diseases."   Well, I am not sure about the whole business about leaping tall buildings etc...but I will gladly accept the super human strength of fighting off toxins and diseases.

I continue to feel reasonably well and I am hoping my strength will carry me through the next 2 crucial weeks.  Today I am receiving very high dose chemo and several drugs designed to eliminate pain and nausea.  Tomorrow is my day of rest...they essentially give me a free pass and leave me alone unti Tuesday; the transplant day.

It has been very hard not to see little Mai and Tal, so Ha and her parents snuck them in here for a short visit yesterday dressed in their halloween costumes. It was a real treat to see them, but that will be it for about two weeks as I work though the toughest of the weeks.  I love you Ha, Mai and Tal.

I have received several funny emails about my bashing of Neil Diamond, and so just to set the record straight, I am somewhat of a closet fan,  but at the time "Sweet Caroline" did not seem to be the most inspiring song to build strength for my radiation sessions.  So, no offense to the many Neil Diamond fans out there.  He definitely has his place, but in my time of need, Springsteen was most appropriate!

Also, for those who are still having difficulties posting a message, it is easy to post on the blog... after you enter your message, choose Anonymous in the drop down menu as your user name and you should have no trouble.  I am a little groggy from the chemo today and the associated cocktail of drugs they provide with it, so just a short post from "the inside".  I am doing fine, still eating, still exercising on my bike and miraculously, my stomach has stayed strong.  I may be breaking records over here for pain tolerance, but all I really care about is making it through and getting home by the end of the month.  That will be the greatest gift of all.  Thanks for all of your encouragement from the outside.  All the best to everyone.  -Ron

Saturday, October 31, 2009

Superman

It's the end of Ron's fifth day and I am amazed and so, so proud. The radiation team calls him a rock star. This afternoon, he completed the last of 8 sessions of total body irradiation. We were warned that during the sessions, most patients become sick or dizzy, with some passing out and others having to take breaks during the session because they're too weak to stand still and upright. Not my Ron. He's blasted through each successive session, never taking a break.

"Commit and go." That's been one of our beliefs in life. Don't hesitate. One road may be harder than the other, but there's no gain in becoming paralyzed at the crossroad or agonizing over the hand you've been dealt. It isn't as critical as than the commitment. Ron is so committed to beating this cancer, I have every faith he'll triumph.

Here are some shots of my hero from the inside. This morning, he was on the computer and still smiling. His blood counts are steadily dropping as they should, but his appetite is strong, and everything has stayed down so far. He's even ambitiously scheduled a conference call for a new deal with American Express on Monday. If they only knew!



In order to avoid infections which could cause serious complications, anyone who enters the room needs to wear gloves and a mask. I miss smooching my Sweetie, but I have to admit that it does eliminate unflattering facial expressions.



The only time Ron is allowed to leave his double sealed door room during his stay is for radiation treatments. Traveling through the hospital hallway, they need to minimize any possible contact with foreign particles, germs, or viruses, so he's pretty much covered from head to toe. Outside the room, I get to take off my mask, but Ron has the upgraded facial protection.




This last shot is of Ron just before the radiation begins. He's standing in the contraption which keeps his body still during radiation. Metal plates cover his lungs to help minimize long-term organ damage. The rest of the room doesn't look any friendlier. It would be easy to become discouraged here, standing alone in silence as the effects of the radiation take a toll on his strength, but Ron's got his Springsteen blaring, his picture of our family taped to the wall in front of him, and he's committed.

I love you, Sweetie.


Wednesday, October 28, 2009

Day 3: Ron - 1 1/2, Cancer - 0

I cannot claim a full victory today as I did start to feel a little funny after the 4th round of radiation (2 today and 2 yesterday), but I am still standing and miraculously still eating their delicious hospital food. The radiation sessions last about an hour and so I have been working on the team down there to develop some better music for me. They were very apologetic the first day, as all they had was a Neil Diamond cd, but at my urgent request, someone brought in a U2 cd this morning. By tomorrow, I am expecting a full set of Springsteen cds, preferably early years (pre-Born to Run). I will create some excitement in that radiation ward if it is the last thing I do.

Ha spent much of the day by my side, which was really nice, and she brought in a series of wonderful family photographs that are now displayed all over the walls of my room. Reminders of some recent family trips to Switzerland and New York, as well as some great shots of us around our house... all great inspirations to finish up my work here and to get home as soon as possible.

Mai and Tal called me to say goodnight tonight. Mai filled me in on her day at school and Tal wanted to tell me all about his new Barney movie. Nothing out of the ordinary, but just beautiful things to hear.

I am half way through the radiation and so far I am tolerating it well. Days 3 and 4 get progressively worse, so I am cautiously optimistic. Thereafter, I begin 2 days of high dose chemo (Cytoxin, I believe) which will ultimately leave me curled up in a ball and awaiting my new stem cells, which should arrive by 11/2 or 11/3.

Please feel free to keep me updated on the outside world when you have a minute. Watching the sailboats on the Charles has been fun, but it is quickly losing it's novelty. Best wishes to you all.

Ron

Tuesday, October 27, 2009

Day 2: Ron-1, Cancer-0

I probably should not play this game and try to keep score after each day, as I am about to enter a period where I am going to have my butt kicked daily, but feeling like a winner today, I couldn't resist by announcing an early victory. Today was my first day of Total Body Irradiation, fondly referred to here as TBI. I will receive 2 doses each day for 4 days and I completed my first day today. The radiation can make you sick and so I was warned that 25% of patients get sick right in the radiation room, which seemed like decent odds, only to then learn that the other 75% of patients just get sick later in their room. I am happy to report that neither happened and I maintained a full appetite throughout the day, thus I feel like I emerged victorious from Round 1. I am a humble man though and realize I may have just been lucky today, so this may be the last you hear of my "victories"!

The care has been tremendous. All of the nurses have been extremely accommodating and they have made every effort to try and make our stay as manageable as possible. This floor is at full capacity and they work hard. Ha spent several hours with me today which was nice and I also received a couple of phone calls from Mai and Tal. It has also been great to hear from all of you whether through email or this blog, so many thanks for keeping me informed and in good spirits. -Ron

Monday, October 26, 2009

Checking in

It's a far cry from the Park Hyatt, but that didn't stop Ron from trying to finagle the best accommodations possible. He scored a river view room with an extra-large bathroom. What he lacks in square footage he gains in having one of two rooms on the floor with two sets of double closed doors to further keep out potential harms. More importantly, we have the best nurses and doctors assigned to his care.

Ron checked in around noon and went into a routine surgery to install a Hickman line (an intravenous catheter) in his chest. I sat in the room with Ron as the doctor described the process, which involves threading one end of a catheter through a large vein in your neck to a major vein just outside the right atrium of the heart. The other end is embedded under the skin, exiting through the chest. Ron didn't flinch. Just a few years ago, Ron won't even let me prick his finger to test his blood glucose, but now he's become so tough.

Because of the aggressiveness of Ron's disease, the doctors have prescribed the most rigorous and brutal regimen possible for his transplant. I have no doubt Ron will do everything within human power to come home as soon as possible.

Today has been a long day. Tomorrow, Ron starts the first session of his total body radiation at 6:30am. We'll try to write each day during the transplant to let you know how he's doing.

Your love is so powerful and really makes a difference.

H

Sunday, October 25, 2009

Transplant

Tomorrow is the day of admission for my allogeneic stem cell transplant. Ha and I have been in and out of meetings all week and I think we are ready. I will be admitted, assigned a room, and once the door closes, will be confined to this room for the duration of my stay. I'll have all of my modern necessities... a laptop, phone, TV, DVDs, books, magazines etc... but will have very limited access to visitors and most importantly, no access to Mai and Tal, as small children are not allowed to visit the bone marrow floor. Ha will be my designated visitor and I hope to be able to see her every day. She has been an incredible source of support to me and if I have not already told you this a hundred times in the past few weeks... thank you and I love you Ha.

The confirmed 4 - 5 week schedule is as follows:

Week 1: 7 days of prep prior to the transplant, which consists of 4 days of radiation and then 2 - 3 days of high dosage chemo. This will bring me to a state of no immunity to make room for my new immune system. Week 1 is generally tolerated well by most patients but I will be very tired, will have lots of pain (from the radiation) and most likely will be nauseous and uncomfortable.

Week 2: On 11/2 I will receive the transplant from my most generous, but anonymous donor, and will then wait for the stem cells to find their way to my bone marrow and begin to grow. Week 2 is one of the most vulnerable as my white blood cell counts will be zero and I will essentially have no immune system. There will most likely be mouth sores, stomach pain, infections and fevers daily. The doctors and nurses will be monitoring me constantly and countering any new issues with various drugs. My platelets will also be extremely low, meaning that my blood will not be able to clot. I will require a number of transfusions to counter the dangers of cuts, scrapes or bruises.

Week 3: The wait will continue as it takes approximately 2 weeks for stem cells to attach and begin to grow. More of the same pain and torture from week 2, but I will be more than half way through, so I will probably be smiling (even with my mouth sores!). At this point, I will most likely break down and tell Ha I cannot watch any more Seinfeld reruns, CNN, or anything with Anderson Cooper, although I predict I will still enjoy Conan O'Brien.

Week 4: If all goes well, my new immune system will start to form and stem cells will begin to grow. Blood counts will start to rise and I am told that I will probably notice an immediate difference in the way I feel. This is a very critical period for me, as positive progression will mean that the new cells have "taken" and that the transplant itself was a success. There are still a number of complications that can occur... "graft versus host" disease, serious infections, and even cancer relapse, but the first necessary step after the transplant is for the new cells to successfully begin growing, and rising blood counts are the first sign that this is happening.

Week 5: Again, if all has gone well, I will be discharged and sent home... battered, but relieved, and excited to connect with family, friends and most of all... Ha, Mai and Tal.

I am eternally thankful to my anonymous donor who has not only provided this opportunity, but has graciously adjusted his schedule on a last minute basis to accommodate my transplant within one week of notification. This was no easy matter as he is required to make 5 consecutive daily hospital visits prior to the transplant, receiving infusions in prep for his donation. There is a mandatory one year wait before a recipient and donor may mutually agree to make contact, and I look forward to personally thanking him next year. It is an incredibly generous gift that he has provided.

While I am in "lockdown", we will update this blog daily. I will try to write if I am feeling well enough, but if not, Ha will update for me. I would be lying if I stated I was not a bit nervous today. I understand the dangers and risk that lay ahead, but I also recognize the need for this, and all of the hope that comes with the process. Ha, Mai and Tal mean everything to me and this will be a small price to pay for many years of love, laughter and life. In that spirit, I am absolutely ready to move forward and attack this challenge with every ounce of energy I have. The support we have received from family, friends and community has provided much needed strength, and I am certain that strength will stay with me each day, and will help carry me through.

More to come from "the inside"...

Ron

Friday, October 16, 2009

Next Steps

This has been an incredibly eventful two weeks and my apologies for not posting for some time. As Ha has mentioned, we received the news yesterday that BCBS reversed their decision and we now have coverage for my stem cell transplant. We cannot thank everyone enough for their support, care and hard work to help make this happen. Help came from some very unexpected places and we are truly grateful to have such strong friends, family and community around us.

The past few days in particular have been an incredible roller coaster ride. Just a few days ago, I had no insurance coverage for my transplant, I was scheduled for 5 full days of chemo (to keep cancer under control while we fight for insurance) and my transplant was delayed to late November. Today, I have insurance coverage, my unnecessary chemo has been canceled, and I am scheduled to begin the transplant in 11 days!

Momentum is definitely with us.... I checked in to MGH on Wednesday morning, expecting to stay until next Monday. We received the news of insurance approval at around 12 noon, and immediately asked if we could delay the chemo and inquire to see if my donor was available for an earlier date. We learned within hours that he was, and so they scheduled a ct-scan to see if my body was ready for a transplant. The wait was agonizing. A positive response would mean I could proceed forward. A negative response would mean more chemo and a possibility that the chemo was not working and a transplant might never be possible. But by 7am yesterday morning, we received the good news... the cancer has continued to shrink, and I was ready for the transplant as soon as possible. I was told to go home, rest up and come back on 10/26 for the transplant to begin.

Additionally, yesterday, I received a personal phone call from Senator Kirk. Embarrassingly, our caller ID said "Capitol, US" and I assumed it was my credit card company! I picked up the phone and was stunned to hear the caller identify himself as Paul Kirk. The call was ill timed as I was with Mai and Tal and they happened to be engaged in a particularly serious fight over a cookie, but we managed to speak for a few minutes and he wished me well and expressed he was glad to have been able to help with my appeal. It is a call I will never forget.

There is a lot to do before I check back in on 10/26. I will be away from home for at least 5 weeks and so I intend to spend as much time as I can with Ha, Mai and Tal over the next 11 days. Ha will be my designated visitor and should be able to spend a good amount of time with me. It is not clear whether Mai and Tal will be able to visit while I am away, but if not, we plan to generously use Skype video phone and send lots of letters and gifts back and forth. I'll miss those guys terribly and Ha, Mai and Tal will be my inspiration to make it through and return home quickly.

Again, many thanks to everyone who has provided support over the past few weeks. Every email, call and visit has provided me with much needed strength and I am grateful to all of you. This experience has also made me appreciate what is most important in life, and these days I hug my kids a little tighter and hold Ha's hand a little longer. I hope you can all do the same with those who are most important to you. I'll keep updating as we hear more news.

Ron

Thursday, October 15, 2009

Approved!




Many of you have been helping us appeal Ron’s insurance denial. Thanks to your amazing support, connections, expertise, energy and advice, Blue Cross reversed their decision this morning! We feel absolutely that you made this happen for us. You are all enormously kind, generous, and so, so strong.

We have very grateful hearts tonight.

Much love,
Ron, Ha, Mai and Tal

Saturday, October 10, 2009

Do you have Blue Cross Blue Shield of MA?

If so, don't contract a rare disease.

Tuesday, we learned that Blue Cross Blue Shield of Massachusetts (BCBS) denied our appeal to cover Ron's stem cell transplant. The reason cited was that the treatment was experimental for Ron's disease in that there was a lack of controlled clinical studies to prove its long-term efficacy. Ron's disease in humans is so rare that it will never have a controlled study. Most histiocytic sarcoma patients are found late stage and cannot qualify for a stem cell transplant. There is just one man in Maryland that shares Ron's disease and was eligible for transplant. His insurer, CIGNA, covered his procedure and he is still alive over one year post-transplant. If BCBS continues to uphold its denial, it is tantamount to saying that there will never be coverage for rare conditions--ever--because any treatment will always be unproven by their criteria.

Since this represents our second denial, MGH informed us they had exhausted their efforts and could no longer help us, but that we had the right to submit yet another appeal to BCBS as consumers. Of course, as consumers, we knew absolutely nothing about the process! If our hospital and doctors had failed to plead our case, what could we do to compel BCBS to overturn their denial? This week has been a crash course in patient rights and advocacy.

For now, Ron's transplant has been delayed because of the insurance hurdle. We only have a small window of opportunity to act while Ron is in remission from this aggressive disease, and at the end of that window, we're checking him in. We feel encouraged by what we've learned this week, thanks in no small part to everyone who has so generously offered advice, experience, and counsel. It is our very strong conviction that BCBS should responsibly, legally, and ethically cover Ron's treatment, and we will do everything within our means to make sure the company agrees.

Saturday, September 26, 2009

Thank you

Ron and I always wanted to raise our kids in an abundance of love, and when this cancer came into our lives, I was terrified that that love would be diminished for them. But things come in unexpected ways, and since the relapse, we have been so grateful and teary for the absolute abundance of love from all of you. From the kindness that you've extended to Mai and Tal--the playdates, special outings, and carpools--to the Concord meal train that has been coming to our house, to the kind words and prayers that arrive by all manner of ways, we feel your support. How generous and lovely you are. We have no doubt our kids will know an abundance of love. We love you all.

H

Home Again

I was released for good behavior last night and arrived home at about 7pm. The week at MGH progressed quickly and despite some minor aches and pains, I am feeling so much better than the last cycle. I have been eating well but still not gaining back any weight. I have lost about 15 pounds since surgery/chemo, but some may argue I should have lost these 15 pounds several years ago, so all in all, I am probably fine at my current weight. I continue with numerous medications to take the edge off of potential nausea and pain, and I am also required to take two shots per day. Ha and I switch off on this task and we have yet to figure out who dislikes doing it more!

Provided I continue to feel well, my biggest physical battle over the next few weeks will be fighting fatigue, so I can try to get back in shape in preparation for my stem cell transplant. The chemo makes you very tired, but I'll need to push myself and exercise as much as possible to build strength and endurance. From what I have learned, my body is about to be subjected to a biological tsunami and I'll need every ounce of energy I can obtain to make it through. My doctors have been very encouraged by the progress they have seen with my chemo, so pending insurance approval, they are still planning for my admittance around October 19. I will learn more in the coming weeks.

Support from friends and family continues to give us strength, and Ha and I are all so grateful for the emails, calls, well wishes and good food from so many. By the way, if you are experiencing difficulty posting a reply on the blog, we have learned it may have something to do with the way you log in. If you have tried unsuccessfully, please try to post your message and then select "anonymous" (as opposed to your login name) and this should work. Don't forget to sign your note though so we know who you are!

It is great to be home and I'll provide further updates as we receive them.

Ron

Wednesday, September 23, 2009

Round 2, Day 3

Not much to report here, which is probably the best news I could provide. Monday check in was a little slow, but the chemo started at about 7pm. I receive 4 doses of chemo, each lasting 24 hours, so I am just about to complete my 2nd dose. Compared to Round 1 a few weeks ago, the 3 days have really flown by, so no complaints and I am hoping for 2 more very quick days. Depending on how soon the last dose finishes up on Friday, I may even get to head home Friday night as opposed to Saturday morning, which would be a nice bonus.

I have been feeling well. No terrible side effects and food, while not very tasty, has been tolerated well. I really cannot complain based upon stories I have heard from others. They have set me up in a nice room on the western side of the building, complete with a stunning view of the Charles River, the Cambridge skyline and beautiful sunsets. Sleep has been a different story... I have a very active roommate and he has had multiple (loud) doctor visits each night, so I have been sleeping on his schedule and getting 2 - 3 hour catnaps throughout the night. As long as they keep visiting him and not me, I can at least be thankful that I am being left alone. It is never a good sign when a team of interns and nurses walk in and say "Mr. Richmond?"... you know it is not going to be a pleasure visit. It usually means tests and shots etc.... so being left alone, but woken every few hours is just fine with me.

So, no news is good news, and that is all I have for you today. Signing off with a big smile and looking forward to escaping to the comforts of my home in a few days, and hopefully seeing many of you.

Ron

Sunday, September 20, 2009

Weekend Update

It has been a very nice few days as the weather has been perfect and I have finally been feeling well enough to get around. Ha and I were able to get out for a "date night" and saw a movie Friday night. Such a simple pleasure, but really nice. Saturday morning, we brought Mai to her first soccer practice. Donned in full soccer gear, she ran around with 35 other four year olds and had a ball running drills, practicing her kicks and of course (the highlight) eating popsicles on the sidelines. It was really a lot of fun seeing her in action.

Yesterday afternoon we visited with some friends in Concord and then went to a family party for Rosh Hashana, ate way too much food and had a very nice time. I have really had to take things day by day this week, not able to plan anything until I understood how I was going to feel each day. The meds have been helpful and so Friday and Saturday were great days and we made the absolute best of them.

We have had some brief conversations with our doctors this week. Both the ct scan and the ultra sound last week were clear... everything looked "unremarkable" which in doctor-speak means "good". This was great news which confirms no cancer progression anywhere. I had a 3 hour "Radiology Consult" which was a humbling experience. Evidently, part of the 8 day prep process leading into the transplant involves "full body irradiation" which means 4 days (2x per day) of full body radiation. It sounds horrific (in a science fiction kind of way) and after hearing all about it.... it actually is. Coupled with chemo, this will fully rid my body of my current immune system. They provided a long laundry list of short term side effects, long term side effects and possible long term risks. Not pretty, but at this point absolutely necessary, so all we can do is listen, absorb and move on. My approach has been "one step at a time" and right now, I am committed to getting through all of this, and making it through to the other side of the transplant. This radiation will help me get there.

Tomorrow I head back to MGH for another 5 day stay. 4 days of chemo and then I will be back home on Saturday for 2 weeks. While the 5 day stay is never fun, knowing that the chemo is working, allows me to feel better about the process. The food could be a little tastier, but I am not complaining! I am sure someone can sneak me in something edible from the outside world. :)

Mai continues to keep me on a tight exercise schedule and at one point during the week we ran laps together around the town tennis courts. At 4 3/4 years old, she can officially outrun her old man (on chemo), but once I get back in shape, I promised her I was going to give her some competition! Tal continues to be the house comedian, always quick with a line or a new gesture to make everyone laugh. As his vocabulary grows, he continues to amaze us with his quick wit. 2 years old and he already knows how to work a crowd. I love those guys.

Thanks again for everyone's continued support. We gain strength from all of your thoughts and care. L'Shana Tova and a happy weekend to all.

Ron

Tuesday, September 15, 2009

Note for My Dad

Mai has been devoted to helping her Dad get better. To remind him of good foods and approved activities, she wrote the following:

Approaching normal

Things have been relatively quiet over the past couple of days. No further news back on the scans from last week, so for now, we assume no news is good news. My pain is finally starting to diminish. They prescribed a drug (yes another drug for me) called Prilosec which seems to be really helping, and so yesterday I stopped walking like a primate (bent over) and began proudly walking fully upright again, like a homo sapien.

We heard back from the stem cell team at MGH. Due to the good results of the current chemo, they are starting to lay out plans for my transplant and have assigned a tentative date of 10/19 for hospital admittance with the actual transplant starting on 10/27. These dates may change, but for now it appears they want to get us into their schedule. There is a one week prep needed prior to transplant where they break down my immune system via a combination of intense chemo and radiation (and if that does not work, they force me to watch "High School Musical" over and over until every white blood cell has left my body). Then on Day 8, they conduct the transplant, a relatively uneventful 3 hour event. Thereafter, it takes about 2 - 3 weeks for the stem cells to attach to my bone marrow and if all goes well, I leave the hospital about 5 - 6 weeks after I was originally admitted (so in my case this would be early December).

We brought Mai and Tal in for Tal's first day of pre-school today. Tal was very excited and we had previously been asking him if "he was ready". In the car he remembered this, so he kept chanting "I ready, I ready" with his big smile. At school, he blended right in and within the first 15 minutes, he was playing with a train set, using their toy tools and pooping in his diaper... we have few worries about him feeling right at home there. Mai was a very good big sister and wanted to show Tal around, and we heard that she "checked in on him" a couple of times during their day. It was really nice to see them both settling in and enjoying the playtime and the school. We want nothing more than a happy, stable environment for them this year, as things are going to soon be turned upside down in our household as I move forward with my next couple of rounds.

Ha continues to amaze me with her ability to juggle 10 different activities at a time, never missing a beat, while still maintaining a positive attitude. Conveniently, we both seem to hit our low points at different times, so we feed off of each other well and tend to bring each other back easily, whether it is with a simple kiss, a reassurance or just an extended hand. I would not recommend this situation for any marriage, but while Ha and I have always been close, this sudden turn in our lives has brought us even closer... something we both need and are thankful for. When in pain, there is nothing better than having your true love next to you.

More news when we have it...

Ron

Saturday, September 12, 2009

Progress

Yesterday was quite a roller coaster ride. Due to my continued stomach pain, I slept just a few hours on Thursday night and by Friday morning the pain was even more intense. I contacted Effi (my doctor) and he confirmed this is probably not a side effect of the chemo and asked that we come in for a ct-scan asap. This justifiably worried us as it meant that he was considering the possibility that despite the chemo, the cancer cells were continuing to grow and were the cause of the pain. Additionally, via blood tests earlier in the week, they determined there might be some complications with my liver. None of this was good news. As the day progressed, my pain continued to get worse. I had a ct-scan at about 4pm and Effi was paged to view the results immediately. The waiting was agonizing as we were fearing the worst. At 6pm, we received the call and to our surprise, Effi announced "good news". Not only have the cancer cells not grown, but most of the cancer that was found just 2 weeks ago was completely gone! For a disease that is usually not chemo sensitive and there is no proven source of treatment, this was stunning news. For now, it appears that the EPOCH chemo was the correct choice of treatment and is working after just one cycle. A heartfelt thank you to Effi Hochberg!

Ha and I are almost completely overwhelmed by these highs and lows. Yesterday was a true test, but it turned out to be a really positive day, and we'll take it. With the cancer shrinking and a potential donor in place, we are feeling pretty lucky. Unfortunately, the stomach pain continues and they are not sure what is causing it, so we'll need to address separately, but for now it does not seem to be disease related. I plan to rest up over the weekend and eat as much as possible (I have lost about 15 pounds!). Looking forward to better days ahead...

Friday, September 11, 2009

Donor match

We received the good news yesterday that they have found an exact match for me through the national bone marrow donor registry... a 10 out of 10! They had originally screened the entire database for donors with a 6 out of 10 marker match and found 4 potentials. Typically, once you have a match on the initial 6 markers, there is a strong likelihood that you will have a full match for all 10 markers. I have read about people who had found hundreds of potential matches though, so my initial 4 seemed like a pretty small pool, but as my doctor stated early on, 4 is better than none, and as it turned out, that was all we needed. So, with a donor in place, the next major hurdle is getting me into remission, which may (or may not) be easy. Histiocytic sarcoma is aggressive and generally chemo-resistant, but others have had success, so we are hopeful that we can get there.

Unfortunately, the past few days have been filled with more pain. I am experiencing a side-effect that has caused a burning pain in my stomach and back, and it is not currently clear what is causing this. It is excruciating at times and has also made it very difficult to sleep. Ha has been taking care of me 'round the clock, and not that we are keeping score, but it is very clear that when I am feeling better, I am going to owe her just about anything her little heart desires. Mai has also been incredibly sweet, bringing glases of water to me, sitting with me holding my hand, and drawing lots of art to hang on my bedroom wall. Tal has been helpful in that he always has a big smile for me, whether he is behaving well, or up to no good. The past few nights, he has been getting up in the middle of the night, dragging his blanket down the hall and climbing into bed with us, which has been irresistible these days.

The recovery is going much slower than I anticipated, but it is nice to hear from all of you and hopefully I will be on the mend in the coming days.

Ron

Tuesday, September 8, 2009

Side effects

My apologies if my response time has slowed over the past few days, but the side effects of the chemo have gotten the best of me. It has been nice to be home, but I have been experiencing much pain and discomfort and so I have been trying to focus on resolution so I can quickly get back to normal. Saturday night, Ha (my new nurse) gave me a shot that is supposed to counter the effects of low blood counts, and the doctors warned me that it might cause some pain in the subsequent days. You learn quickly that when the doctors actually tell you there may be pain, it is best to move directly into the fetal position and prepare for the worst. This shot apparently pulls bone marrow from your bones (not sure if I understand this fully) and therefore causes significant bone pain. They were right and it hurts. Additionally, the chemo has had a strong negative effect on my stomach and so they have placed me on a BRAT diet (bananas, rice etc...) which only adds to my happiness. So, no more delicious food for a few days until everything settles. Our house is filled with homemade brownies, cookies etc... so a simple act like walking through the kitchen has created a new challenge.

The weather has been beautiful though and it has been nice sitting out in the backyard with Ha, Mai and Tal. We sent Mai off to her first day back at school today and Tal starts his pre-school program next Tuesday. We rented and watched the Wizard of Oz over the weekend and Mai loved it but announced she did not want to watch it again until she was at least five (too scary). Tal simply stated "no like". I think we'll stick to Tom & Jerry and Elmo for the immediate future. Speak to you all soon.

Ron

Sunday, September 6, 2009

Everthing shines

... more brightly with Ron home.

H

Home Sweet Home

I arrived home yesterday to an army of kids and dogs, and spent a blissful day doing absolutely nothing but sitting out in our backyard, playing with Ha and the kids, blowing bubbles and eating lots of good food. I do not have too much to report regarding my hospital stay. For 5 days, I felt like a cross between a pin cushion, a scientific experiment and just simply a guy laying in pain, but as expressed... all a minor inconvenience if I can look back on this and understand it was all part of my cure. To take off the edge, my days were filled with lots of CNN, Marx Brothers movies and family visits, and I can proudly say, I am now fully versed on the Jaycee Dugard case, Obama's health plan and the California wildfires.

I am not one who embraces drugs, and in my adult years (sans college!), I barely take an aspirin unless really needed, but I have lost track of the amount of drugs I have been given in just the last 5 days alone. I tried to keep track of everything during the first day or two, but after receiving multiple drugs to counter the effects of the chemo, and then more drugs to counter the effects of those drugs, I just gave up and let the doctors do their thing. It is such an unusual situation to feel badly from my treatment and not from my disease, but that is exactly what I have experienced.

I stayed on the floor where they conduct extended chemo regimens as well all Bone Marrow Transplants, so I had an opportunity to speak with a number of patients at different stages of their treatment. I had rotating roommates throughout my stay and 2 of my 3 roommates were in their early 20s with extensive disease. It was humbling to understand that while I feel quite young to be exposed to and to experience this type of life challenge, there are many others who are younger and are faced with even greater challenges.

I am home for 2 weeks and then will be returning to MGH for another 5 day stay on 9/21. I am experiencing some side effects from the chemo... mostly body aches, stomach pains etc... but my appetite is strong (that will never go away) and I am really looking forward to getting back to semi-normal for a couple of weeks. Thanks again for all of your emails, calls, delicious food and warm support. You guys are all giving us strength.

Ron

Friday, September 4, 2009

Just twelve more hours

Ron is scheduled to come home tomorrow morning and we all can't wait.

It was a hard week, but it went by quickly. Before the start of his chemotherapy on Monday, the doctors took a scan of Ron's abdomen so they could measure the efficacy of the treatments he was about to receive. Tuesday we saw the results, which showed that the remaining mass had grown in the few weeks since his debulking operation on August 13th. Dr. Hochberg described the rate of growth as aggressive, but noted that he had seen even more rapid growth. Ron will return to MGH for a second cycle of chemo in 10-14 days, and then we'll look at another scan to measure progress. We hope the chemo will do its job and shrink the tumors at least 50% to make possible the stem cell transplant.

Ron continues to be my hero, enduring the constant needles, endless cocktails of intravenous drugs, uncomfortable side effects, and institutional baked meat dinners in the shape of a hockey puck. He sets our bar for courage, compassion, and spirit.

H

Tuesday, September 1, 2009

Finding Chemo

I checked in to Mass General yesterday morning expecting a quick ct-scan and then the start of my chemo. Things moved slowly though and after check in, a little introduction by the nurses and the installation of my pic line (for my IV), it was already about 4pm and still no scan or start of chemo. The scan finally happened at 6pm and my chemo did not start until midnight. If you have ever been woken up at midnight by 2 strangers explaining "your chemo is about to begin", you will fully understand... it was not a fun night.

I am receiving EPOCH which is a combination of 4 drugs via IV, plus a steroid taken as a pill. The plan is to receive a 96 hour constant drip, as there is active cancer currently growing in my body. Because doctors do not know if cancer cells grow with greater speed when you sleep or when you are awake, the plan is to provide a constant drip to cover all cycles. This seems to make sense to me, and if it works, the two 5 day hospital stays, while uncomfortable, will just be viewed as minor inconveniences. Although someone commented to me that I should have requested the chemo be provided in a suite at the Ritz Carlton, as it would probably be cheaper than the hospital stay and would save my insurance company some money.

Ha has been a tireless supporter, visiting me daily, sharing "romantic" dinners with me bedside, and making sure that every nurse on this floor knows exactly who I am and what I mean to her. She has been my rock. Mai packed a yoyo in my care package today so I can practice and play with her when I get home. Along with bike riding and piano playing, yoyo-ing has emerged as a new passion for her and she is quite competitive. Tal has discovered the joys of Mickey and Minnie, and when I called to wish them goodnight last night, he was "too busy" watching his movie, so perhaps I will have better luck tonight.

So the fight goes on, and while I occasionally do have very low points, I am thankful for the care I am receiving at Mass General (a great hospital), and the strong support I am receiving from family and friends. Thanks to you all. -Ron

Friday, August 28, 2009

Appreciation

After a couple of quiet days at home, yesterday was full of activity. As Ha mentioned, we heard from Dr. Chen, the transplant specialist at Mass General, and learned that none of my three siblings were a match. However, they have found 4 potential good donor matches through the national database, and have reached out to them for further testing. It was explained to us that success rates from a non-sibling donor match are nearly as good as a sibling match, but the primary challenge is that with non-siblings, you need to have greater flexibility to accommodate their schedules, and sometimes, they are not as committed to following through as a sibling may be. It was a huge relief to learn that 3 of the 4 donors had replied back within a matter of days to agree to further testing.

Lately, I have found that any bad news (or potential bad news) just makes me numb, but I find that the good news, or the acts of kindness that we are experiencing, bring about the most emotion. I have tried to live a mostly self-sufficient life, but I find myself in this situation with no choice but to accept help and support from everyone and anyone. It is sometimes an uncomfortable position for me to find myself in, but ironically, I also feel an overwhelming sense of appreciation for the kindness and generosity of others. If we are able to find an anonymous match, I wonder if the donor truly understands how much they are giving. The stakes are so high.

Today we have an appointment with a specialist at Dana Farber who will be reviewing our case and providing a second opinion. He has some experience with Histiocytic Sarcoma, and we met with him last year as well. My guess is that he will agree with our current plan, but it should be a worthwhile visit to learn if he has any different ideas to present.

I am feeing better today and eating everything in sight so I should be in pretty good shape for round 2 at MGH on Monday. Yesterday, I walked with Mai while she took "the longest bike ride ever", so I feel like I am making some progress on the exercise front. Tal (with training wheels) followed behind with Ha's Dad, pedaling as fast he could, determined to catch up. Looking forward to more of the same this weekend.

Ron

Thursday, August 27, 2009

Grace

Today was a harder day, physically and emotionally. Abdominal pains kept Ron's activity low, but he was able to get out for a short walk alongside Mai on her bike.

We received two pieces of important news from the transplant center. The first was that none of Ron's three siblings were a match for him. This was a blow, but our doctor assured us that well-matched non-related donors have nearly the same success rate. The second was that there were four potentially positive matches found through the national donor database. We would not know the names of these donors, where they are located, or whether their contact information is even up to date (donors stay in the database for up to 10 years). Our doctors would have no contact with these potential donors, and contact could only be made through the database. We were told earlier that a great advantage of a sibling match would be accessibility; that Steve or Angel or Billy would show up when needed, knowing exactly what's at stake.

What would an unrelated, nameless donor do? Would they come in promptly to be confirmed as matches? Would they be on vacation? Would they decide they can no longer fulfill the commitment? Would they understand how desperately our family needs Ron? We called back the transplant center to pepper the donor coordinator with these questions and she graciously looked into the computer to tell us that yes, three of the four donors already scheduled appointments to be confirmed. Ron and I both burst into tears.

We've lived with this discovery of Ron's relapse and what it might mean for our family for almost three weeks now. We've shed a lot of tears. The fear and sadness doesn't hurt us like it used to. Instead, it's the incomprehensible grace and generosity that moves us beyond words. What I wouldn't give to thank these strangers myself. Thank you, thank you, thank you, for this precious chance to keep our family well.

Tuesday, August 25, 2009

Eating

Food has never tasted so good.  I had the staples removed from my incision yesterday by my very capable surgical oncologist, Cristina Ferrone, and she expressed that everything was healing well and gave me the go ahead to gradually start working all foods back into my diet.  Ha's Mom has been cooking up a storm and food has never tasted better.  I have lost 7 pounds since my surgery, so they have advised that I try to be careful, but to eat as much as possible, so I can try and gain back some weight prior to my next round of treatments.

I was feeling much better today so we took Mai and Tal to Whites Pond for a swim, and then headed to the Food Project to do our weekly pick-up of organic veggies in Lincoln.  We were able to pick our own raspberries and cherry tomatoes and as usual, ate more than we picked.  Tal alone probably ate about 20 tomatoes and had seeds dripping down his shirt as we left, which was pretty incriminating.

I am still taking percocet but trying to slow down the dosages.  It has been 12 days since my surgery and I am amazed at how long this recovery has taken.  One step at a time I suppose as I need to head back to MGH on Monday for 5 days of chemo.  Yesterday, I discovered a new Histiocytic Sarcoma case in Florida.  In June, a 28 year old soccer coach was admitted to a hospital with terrible stomach pains and after a few weeks of tests diagnosed him with HS.  I believe his disease was found in an advanced stage and I have sent him an email and hope to speak with him in the coming days.  As far as I can tell, there are now 3 other ongoing cases in the US (besides my own case), and most likely there are others that are just not documented.

Off to eat some more food....

Monday, August 24, 2009

Sunday

Sunday was a very nice day. Alan, Stacie, Tedi and Jamie visited in the early afternoon and Steve, Julie, Ben & Jordan visited later in the day. Julie had just picked up Jordan from camp on Saturday. Steve had just picked up Ben from camp earlier in the day Sunday, and they are now all driving up to Bowdoin today to see Ben off to his first year of college, so it was one of the only opportunities to see all four of them together for a while. Lots of funny stories from the summer and it was a reminder of what a great time of life it is for both of them. They have grown into smart, funny, and confident young men.

It was also great to see Jamie and Tedi, as they have really grown. They spent most of the visit entertaining Mai and Tal, and we are already negotiating rates with Stacie for future babysitting. A highlight of the day was receiving a card from Alan signed by Peter Wolf (of the J Geils Band). Peter Wolf is one of Alan's clients, and Alan secured a "well wishes" card from Peter himself. I am convinced Alan told him I was a 9-year-old boy in the hospital to prompt him to write the card. It was a really nice gesture; Alan, you are a good friend. If anyone is interested in "one-upping" Alan, a card from Bruce Springsteen or James Taylor would really make me feel great!

I am just starting to re-enter the world of eating. I have been surprised at how long it has taken for me to get back to regular eating, but after a week of applesauce, bananas and soup, I am glad to be slowly working regular food back into my diet. Mai and Tal have been a big help with my recovery. Tal makes me laugh with his little tricks and performances, and Mai has become my new nurse. As part of our daily routine, she takes me for "walks" around the house, encouraging me to exercise my way back to health. She is extremely caring and devoted. As we near the end of our walks, we always end up in the kitchen where she sits down and directs me to continue doing laps around our island while she takes a break. A chip off the old block I suppose, so I don't say a word and just keep walkin'.

Ron

Saturday, August 22, 2009

Unnecessary lengths

Had I known Ron would go so far as to get cancer just to leverage a TV in the bedroom, I'd have given in earlier.

H

Slow recovery

My apologies as I have been out of commission for the past couple of days. My recovery seemed to be going well and I think the excitement and relief of leaving the hospital gave me a temporary, and much needed, boost. However, the past two days have been filled with really bad stomach pains (gastritis) and so I have been resigned to upping my pain meds and taking tons of Tums. I must admit, after seeing more than 1,000+ television commercials for Tums in my lifetime and never once trying one, I have a new-found respect for those little pills. They have helped eliminate pain that rivaled anything I experienced in the hospital. Today, I am starting to feel better and am hopefully back on the road to recovery.

Ha's parents have stayed with us this week and have been tirelessly watching Mai and Tal 'round the clock. Their help has been invaluable... cooking, cleaning, babysitting, doing whatever is needed. My Mom came by on Thursday with a big sour cream/apple cake that is not lasting long, and my office sent a huge bouquet from Edible Arrangements with all types of chocolate-covered fruit... we are not lacking food here at home. Ha continues with our room reorganization project and moved Tal's crib back into what will soon be a spectacular "kids suite" in our back family room. Mai and Tal will be living in more luxurious accommodations than Mama and Dada, but I suppose they will let us visit from time to time. Also, I finally got my big TV in the bedroom. This has been a long standing battle between me and Ha. She feared a lifetime of waking to CNN blaring at 3am, and I just wanted a big TV with a "sleep" mode to allow me to catch a little news or a movie in bed. Well, Ha finally gave in and delivered a TV on Thursday and I am trying to maintain restraint in regards to late night trash TV. I have not broken it to her yet, but one of my ulterior motives is to be able to watch Three Stooges CDs in bed with the kids on the weekend (every Mom's worst nightmare)! But one step at a time....

As far as medical stuff... Effi got back to us with a schedule for the next steps. I will be recuperating at home until Sunday 8/30 and then on Monday 8/31, I will head back to Mass General for a five-day stay to receive EPOCH chemo which is primarily used for patients with Hodgkins disease that experience relapse. EPOCH was also used with my friend in Maryland, Mark Lightfoot, who is one of the only other Histiocytic Sarcoma patients currently being treated in the US, and he has had good results. Mark has been both an inspiration and a good friend to me. After being diagnosed with Histiocytic Sarcoma in May 08, Mark received a stem cell transplant in October 08 and is now well and back at work.

That is all for now. Thank you for your continued well wishes. More to come.

Ron

Wednesday, August 19, 2009

Back home

I wanted to get a quick note out here to thank everyone for what has been truly overwhelming support. I arrived home from Mass General yesterday and was so relieved to leave the hospital behind me. Two or three days flat on your back is fine, but after six days, I was really anxious to get home to my own bed, and to be surrounded by Ha, Mai, Tal (and three frantic, but devoted dogs, of course).

The hospital stay was quite an adventure. Yes, some of the nurses had a much clearer understanding than others, of how important it is to keep the catheter tube perfectly still! And, after a nice, quiet roommate who had gastric bypass surgery, my second roommate was the victim of a multiple stabbing. While a very nice guy, he also required special security as the attackers were still at large. I do not think I ever fully slept with both eyes closed at night, fearing a late night mix up in a very dark room! Friends offered to create a sign for me with a big arrow pointing to the other bed, but despite the lack of a sign, I survived my stay. Thank you to everyone who was able to visit, email or call... it is hard to explain this situation I am in, but without question, it is incredibly helpful to connect with all of you, and your support and positive thoughts are invaluable.

I will write more in the coming days, but just wanted to let you all know I am fine (although in some pain), in good spirits, and ready to take on the next set of challenges. We have a long road ahead of us, but as this blog states, "life is good" and I fully intend to do everything and anything I can to beat this disease.

Many thanks to everyone, with a special thank you to my Sweetie Ha, who has worked tirelessly to keep my spirits high, my pain low, and has been such strong support at a time when I need it most. You are my true love. And, in lieu of gifts or flowers, please consider taking Mai and Tal out for an ice cream or a bike ride. That would truly make me smile. More to come,

Ron

Parole

Ron came home yesterday, paroled from the hospital for two weeks. He's moving slowly, but still smiles easily and looks great to me. It's a lovely peace to have our little family under the same roof again.

This is a short movie the kids made for Ron while he was in the hospital. Mai and I have been talking about how Dada is always in her heart, no matter where he is, and Tal--not quite grasping the subject--proudly proclaimed that Dada is "in my tummy!"

video

Thank you, all, for your love and support. It makes such a difference.

Saturday, August 15, 2009

Day 1, post-surgery

"Pain. Lots of drugs. Great day with my sweetie. Nurse keeps flicking my catheter."
--Ron

My man of few words is on heavy narcotics. Today was spent quietly, getting stronger. Our very capable and kind oncologist, Dr. Hochberg ("Effi"), came to visit and outlined our plan for the weeks and months ahead:

  • 4 days in the hospital, recovering from surgery
  • 10-day recovery at home
  • 5 days of chemo in the hospital
  • 10-14 days of recovery at home
  • 5 days of chemo in the hospital
  • 10-day recovery at home
  • Scan to confirm whether disease is at a level to survive a stem cell transplant
  • Begin stem cell transplant

Ron's siblings each gave blood to determine whether they might be a donor match. Angel, Steve, Billy, we're enormously grateful.

The kids had a great morning in Concord with Nana. They each pushed their own mini shopping carts at Crosby's, no doubt blocking aisles and impeding traffic. Mai went to the library with friends for a special showing of "Hotel for Dogs," which I'm sure we will continue to hear about for days. And this evening, Ong Ngoai and Ba Ngoai arrived from Colorado to lend their help and support for the coming month. We couldn't do it without them.

Hope you all enjoy a wonderful weekend.

Friday, August 14, 2009

Road to wellness


Yesterday morning, Ron returned to Mass General Hospital to begin his road to wellness. The biopsy results confirmed that the mass found around his colon and small intestine was a recurrence of the histiocytic sarcoma diagnosed almost exactly a year ago today. In open surgery, Dr. Ferrone removed as much of the mass as possible, but it was not possible to remove the last 20% attached to arteries in the remaining part of the small intestine. Removing more of the intestine would make it impossible for Ron to digest solid foods.

Ron came out of surgery yesterday evening and is currently recovering in a double room alongside a roommate with a fondness for Jeopardy. His bed is by the window with abundant natural light. I'll join him again today and stay until they kick me out.

Sitting for hours at the hospital watching people come and go—new mothers, elderly friends, entire families sitting in vigil—made me so keenly aware of how important relationships are. Even in difficult times, it's love that we feel. The laughter is love; the fear is love; the pain is love. Your love will keep us strong.