Wednesday, August 22, 2007
hey there fever. stay away!
The drama side of the weekend is that the "negative" culture result we received on Saturday was a bit premature. Those cultures did end up being positive after all. As a precaution, and because fellows like to cover their butt and order everything under the sun, on Sunday Joe had a CT of the chest, abdomen and pelvis. Nothing remarkable was found, except some improvement in Joe's lungs compared to the previous chest CT. An ultrasound of the neck was also ordered and performed on Monday. We're still not quite sure why it was ordered, but it gave Joe another excuse to visit the radiology department. Within five minutes of being in the waiting area, Joe had about ten people go and greet him. I'm sure the other patients were wondering what kind of celebrity was sitting before them! Again, nothing remarkable was found.
On Monday, Joe was also taken off of Daptomycin and started on Linezolid. Because Joe's WBC is so low, Linezolid seemed a better choice. Each day since the discovery of the bacteria, Joe has woken up with a fever. The fever generally lasts a few hours and then Joe is afebrile until the next morning. This morning was the first time that Joe woke up without a fever. Woohooo! Also, 21 hours after yesterdays culture, it was still negative. This is a good sign, and the huge smile that Joe's dad was sportin' all day is proof of that. So now, chemo could start as soon as tomorrow. For real this time.
Just like Joe's first round of induction chemotherapy, Joe will be getting cytarabine (Ara-C) and daunorubicin. The last round was a "7+3" regimen. Joe received cytarabine continuously for seven days (7). For the first three days Joe also received daunorubicin, the fifteen minute infusion that looks like cherry kool-aid (+3). This round will be shorter, a "5+2" regimen. So five continuous days of Ara-C, and daunarubicin the first two days.
Other interesting news. Joe's fingers have been peeling for a couple weeks now. It was very similar to when Joe started getting GVHD. Interestingly enough, some final results from Joe's last bone marrow biopsy showed that Joe still now has 5% donor in his marrow. So the peeling is definitely from GVHD. Now since the donor has survived all the post-transplant chemo Joe has had so far...how neat would be if it survived this next round as well, and blossomed! Nothing's impossible right? Something to think about. What is even more interesting and strange is that Joe's marrow went on to show 25% male. So what was the other 70%? It was x0. That is, a single x chromosome. We have no idea what this means...except that it does NOT mean that Joe has Turner Syndrome. Very strange.
Joe has remained CMV negative for several weeks now. Yay! He has had 115 platelet transfusions and 32 units of blood since May 21. His appetite isn't too bad. And yes, he is thinking about new paint colors for his room, ordering new furniture, building an addition, and requesting that the room be named in his honor!
Jim and Jesse completed the Marrow Trek! Read their last Blog entry if you haven't already. They are truly amazing guys. THANK YOU Jim and Jesse for being such amazing friends!!!!!
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Thank you 1st Uncle & Auntie, 2nd Uncle, and Albert for visiting!!!!! Joe was so happy to see each one of you.
Thank you to Uncle and Auntie Tzeng and LeeAnn for your visit. It was really nice to catch up with you.
Thank you Phyllis, Auntie & Uncle R.C. Lin, & Auntie Tzeng for the cards. They always brighten Joe's day.
Yoohoo, HANNAH (banana) HAPPY HAPPY 4th birthday!!!!!!
And congratulations to Sheena (Mareena) on being an Aunt!
Sunday, May 06, 2007
Day +117
Thursday, Joe and I went back to the hospital for his third round of Cidofovir. If Joe is CMV negative on Monday, then we party! If he is still positive, then there is talk of giving him Ganciclovir and Cidofovir. There is a hope that the two together might effectively take care of the CMV.
Thursday, we knew would be a long day. The whole Cidofovir process takes 6 hours. (Joe also got platelets again, but that was relatively quick.)In the past, we usually went home around 2 or 3 in the afternoon. But last week was the Week of Waiting; we went home at 7pm. Still, we are blessed that Joe is able to go home. (Dear Baby Livi and her mom have been living at the hospital since her transplant two months ago.) Not only that, but we were blessed by a visit from our dear friend Sheena. You might remember that when Joe was admitted to the hospital shortly after being diagnosed, Sheena let me stay at her place many nights so that I wouldn't be as far from the hospital. Sheena started attending our church and fellowship the same time that Joe and I did. In the past four years she has become such a good friend. Unfortunately for us, she is finishing up dental school and leaving Pittsburgh this week. We're going to miss her so much!!!!!! Sheena has such a huge heart, and she is also just about as silly as I am. Actually, she may even be sillier. In any case, she made our long day at the hospital on Thursday feel much shorter. Thanks Sheena!!!!
Since Thursday, we have had a bit of a break from the hospital. Unfortunately, also since Thursday, Joe's rash has become increasingly worse. On Saturday, after a call to the doctor, Joe was put back on Cellcept - the immunosuppresant that was stopped when we first learned Joe's graft had dropped. This whole treatment process is so crazy. Lower the steroids and immunosuppresants and the GVHD starts to flare. Increase the meds and Joe's CMV becomes positive again.
When Joe starts to scratch he always gets a lecture from me...or a little slap on the wrist. This time around though, he is getting pretty smart. Joe will seemingly vanish into thin air, and the house will become very quiet. Then he will emerge again, looking a bit sheepish and with some patches of especially red skin. Very suspicious...
Our friend Sha invited me to go to the symphony with her on Saturday evening. I almost declined. I'm not with Joe all the time. But I am with him most of the time. Up until last night, all of my excursions were either during the day or they were only a very short distance from home. What can I say? I'm an overprotective wife. But Joe convinced me that he would be fine and that I should get out of the house - not only for my own sanity, but so that nice friends like Sha still love us once Joe is well enough to be out and about! Well, I had a wonderful time with Sha. It was a really fun night of music. Plus, I got to see my Uncle Kao. When I got home in the evening, I reenacted the whole experience for Joe. I'm not sure that the conductor or the musicians would appreciate my impressions, but Joe seemed to get a kick out of it. :)
We go back to the hospital in the morning. I'll keep everyone updated. Speaking of updates, check marrowtrek.org sometime this week. Jim & Jesse should be putting up an update on their progress soon!
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ANNOUNCEMENT
If you look at our links to the left, you will see that one of the girls in our prayers is named Kailee Wells. She is only ten years old and has already had two bone marrow transplants. Six years ago, her parents had an idea for a "Thanks Mom" bone marrow campaign. Since then they have been able to work with the NMDP to run a national bone marrow drive each year in honor of Mother's day. There are drives being held all over the country with a goal of 20,000 new registrants. You can also register online for free while funding lasts. The event runs from May 7-21. You can learn more here. Please, please, please SPREAD THE WORD!
~~~
Thank you Sha for the lovely card that you sent!!!!
Thank you Indiana Mom & Dad and Monroeville Mom & Dad for visiting us this weekend and bringing food!
Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.
~Matthew 18:19-20
Thursday, April 26, 2007
Day + 106
Joe is doing very well. Monday's blood draw showed that he is now CMV negative. YAY!!!!!!! This means just one more dose of Cidofovir, which will take place next week. The down side is that Joe's WBC is still very low (yup, he had another filgrastim injection). Yesterday, Joe had bone marrow biopsy #7 to ensure that everything is as it should be in his marrow. We are praying hard that the results are good. Joe has been feeling a bit better each day now so it only makes sense that everything else follows. Amazingly enough, Joe had his biopsy without any morphine. Is he brave? Is he crazy? Is he stupid? Maybe a bit of all three? I don't know. But the fortunate thing is that the nurse practitioner who did the biopsy did a wonderful job. Out of the six different people who have had the privilege of doing a bone marrow biopsy on Joe, she ranked in the top two...oh, but one of the six was eliminated from the ranking since morphine was involved. :)
Another thing is that the Mepron (the yellow paint stuff) and Joe's stomach just were not agreeing. Joe has lost a lot of sleep in the last couple weeks because the Mepron has caused a lot of discomfort and rumbling and such. So...Joe is going back to the monthly Pentamidine. We are trusting that the techs who administer it are fully aware of the proper methods now. Please pray that this is true!
~~~
Thank you Sheena for bringing us food. It was all so yummy. You better be eating well too!!!!!
Praise the Lord, O my soul, and forget not all his benefits - who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's.
~Psalm 103:2-4
Thursday, April 19, 2007
One Hundred Days!
Joe had another dose of Cidofovir today. As of this past Monday he is still CMV positive, but that was expected. We're hoping next week, and each following one will be a CMV negative week! While Joe was hooked up to his IV pole, I decided to trek downstairs where there was a blood drive and get punctured with a giant needle. It was the least I could do after all Joe has been through. I felt really good afterwards, and then a couple hours later I felt like I had been run over by a truck. I gained even more respect than ever for Joe and all the other people we pray for each day. One pint of blood had me all woozy, and here Joe's counts have been low for months and months, and he has been poked with so many needles, big and small. Overall, I had a really positive experience and am really anxious to donate more regularly. Speaking of Joe's low counts, he did need another shot of filgrastim today. Fortunately, those needles are really tiny. Let's go counts, think UP!
Today is a monumental day for another reason. Jim and Jesse made their way down to the Mexican border today and will officially begin the Marrow Trek tomorrow. We are really excited about what they are doing, and so blessed by their energy and spirit. You can track their progress by clicking here. They will also be keeping a blog which they will update each time they encounter a computer! Please keep Jim and Jesse, and their beautiful dogs Whistler and Scooter in your prayers. Also a gigantic thank you to the people who have made pledges or donations to Marrow Trek so far. The support that has poured in for CLLF and Dana-Farber has been overwhelming. We are so amazed and encouraged by the generosity of both friends and strangers. Thank you.
Now for those curious minds who don't read Chinese, and saw my dad's comment the other day...Essentially, he was teasing me for writing such a lengthy blog and using a well known Chinese saying to equate my post to the cloths that were once used to bind the feet of women in China - long and smelly. Thanks dad, I love you too! :P
~~~
Thank you Cousin Lilly, Ben, Kristin, Alex, Lauren, and 1st Auntie & Uncle for the postcard!!!!! (Bet you didn't know that I just started teaching myself how to play ukulele and learning a song that mentions the humuhumu-nukunuku-a-pua‘a. I laugh every time I get to that word. So the postcard was perfect!)
Thank you Gordon & Julie for the food. It was so sweet of you. We appreciate it so much!
Thank you Nancy for sending such great photos. I can't stop looking at them. They are great.
Wait for the Lord; be strong and take heart and wait for the Lord
~Psalm 27:14
Tuesday, April 17, 2007
Ten ways YOU can help.
1. Pray. So many of you have been praying for us, and I cannot emphasize enough how much that has meant to us. I firmly believe that each of your prayers, happy vibes, and virtual hugs have kept us strong on days when we should have been weak, helped with the overall smoothness of Joe’s recovery process, and have all around enveloped us with the best of warm fuzzies. I would also challenge you to add one or two other people to your prayer list from our links to the left. Or go to Asians for Miracle Marrow Matches and pray for the patients there. There are too many people who are battling these awful cancers, and each one of them could benefit from the power of prayer.
2. Spread the Word. It is all about spreading awareness. We knew virtually nothing about bone marrow failure, blood cancers, and bone marrow transplants before our journey began. Now that we have been forced to come face to face with the awfulness of MDS, it has challenged us to arm ourselves with information so that we are able to educate others and promote awareness. Go out there and spread the word. Tell people about this list! Getting information directly from a human being can be much more effective than getting information from a flyer.
3. Register to be a Donor. If you are in good health and are between the ages of 18-60, you can register to be a donor. Registration is simple and doesn’t hurt. Just fill in some forms and swab your cheeks. Most people will never be called, but if you are – honey, you’ve won the lottery. What can be more fulfilling than an opportunity to save a life and be an answer to prayer. Click here to get started.
4. Pregnant? Make plans to donate cord blood. If you have already decided to make arrangements for personal storage, that is a personal decision and totally cool. If not, then the umbilical cord and placenta are commonly tossed after birth. Consider making arrangements to donate the blood. It could help save a life! If you will be giving birth in a hospital that is not affiliated with a cord blood bank (for example, Pittsburgh does not have a cord blood bank yet) you may call Cryobanks International, and visit their site for more information. The number is 1-800-869-8608. They accept donations from all over the U.S. You must register between the 28th and 35th week of your pregnancy. You can find more information here.
5. Donate blood and platelets. Patients with cancer often have to have multiple blood and platelet transfusions throughout the course of their battle. Donating blood and/or platelets is a wonderful way of helping to make sure they get the transfusions necessary. Look up your local blood bank or Red Cross for more information.
6. Support a charity.
Marrow Trek – Thursday, April 19, 2007 is Joe’s Day 100! Friday, April 20, 2007, Joe’s college roommate Jim and another college friend Jesse will be starting a 3,000 mile hike over 4 months. The purpose of their trip is to raise money for the Dana-Farber Cancer Institute and Cammy Lee Leukemia Foundation (CLLF), and raise awareness and sign up donors for the National Marrow Donor Program (NMDP). Amazingly enough, the pledges have already exceeded their goal of $15,000. However, Jim always hoped that the goal was a conservative amount. You can still donate. And you can be sure that every penny of your hard earned, tax-deductible donation will go straight to Dana-Farber Cancer Institute or CLLF. Visit the site for updates on their progress.
Aplastic Anemia & MDS International Foundation, Inc. – AA&MDSIF is a wonderful group that provides support to patients and does research related to treating and curing bone marrow diseases. The bravery bracelets that some of you have are from AAMDS!
Leukemia & Lymphoma Society – This is another group that funds education, research, and support. You may recall that our friend Louis ran a marathon to help raise money for the Leukemia & Lymphoma Society.
7. Knit, crochet, or sew. I know that there are many people out there who are crafty. Here are two organizations that are dedicated to turning craftiness into charity. Check out the pages for more information.
Project Linus - providing security through blankets.
Head Huggers - providing hats for those who have lost their hair due to chemotherapy or other medical situations.
8. Shop through iGive.com – For all you shoppers out there, you can shop at many of your favorite online stores through iGive.com. Go shopping, and a percentage of your purchase will go to the charity that you designate. CLLF, AA&MDSIF , and The Leukemia & Lymphoma Foundation are all charities that you can choose from.
9. Use GoodSearch.com to Surf the Web – Love to surf the web? If you use GoodSearch.com as your search engine, money will go to your designated cause. I know that you can choose AA&MDSIF as a charity.
10. Contact your congressperson. This message was in the most recent AA&MDSIF e-bulletin.
Dear Friend, On March 6, 2007, Representatives Jim McGovern (D-MA) and
Mary Bono (R-CA) introduced H.Con.Res. 81, the Bipartisan Bone Marrow Disease
Resolution, to encourage the federal government to fund research and engage in
public health initiatives that give patients greater access to more treatment
options and, ultimately, cures for bone marrow diseases.The Aplastic Anemia & MDS International Foundation played a key role in drafting, presenting, and securing the introduction of this resolution before Congress.
Now it’s your turn to help!
For this resolution to pass, we need to have a broad level of support from individual Members of Congress. Now is the time to contact your U.S. Representative to urge them to cosponsor H.Con.Res. 81. If you do not know who your Representative is, or need contact information, please access [the U.S. House of Representatives site] and enter your zip code under the heading "Find Your Representative."
For your convenience, we have attached a sample script that you can use when you contact your Member of Congress.
Members of Congress do not cosponsor these types of resolutions unless they hear from their constituents. Spread the word and contact your elected Representative today!
Sincerely,Sherrie Van Vliet
Acting Executive Director Click here for Script
If you have read this far, THANK YOU. I know for a fact that many of you have been doing your part to help as much as you can. How can we begin to thank you? I want you to know that every time we hear that someone has helped in some way, Joe and I literally jump up and down with joy. It is important that we make every effort to turn something negative into a giant positive for others. We are grateful for each one of you who is helping us with that effort!
You are the light of the world. A city on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before men, that they may see your good deeds and praise your Father in heaven.
~Matthew 5:14
Monday, March 05, 2007
Hallelujah! Generous contribution!
Haha! Of course, that whole preceding paragraph was completely fabricated (e.g. LIES). Just wanted to show you what we might achieve collectively with a little elbow grease / ga you / chutzpah. If only life were as easy as above. Do you think Pittsburgh's David L. Lawrence Convention Center was built in a day?! (Apparently the answer to that is "yes"). marrowtrek.org operators (i.e. internet trolls) are eagerly standing by for your generous donations. You say that you don't have one hundred million dollars to spare? Well, we'll gladly take one hundred million pennies.
Now, I went to Stanford and have a medical degree from another prestigious university, so math isn't exactly my strong suit. But let's just suppose that you decide to make a sorta generous donation of $3 per mile of trek. Assuming Jim and Jesse accomplish their trek, your total pledge is less than $10,000! If you think about it, that's mere pennies a day for the next 50 years or so: you can share this gift of giving with your grandchildren and probably your grandchildren's grandchildren. I know that it's quite difficult to part with hard earned moulah. Take me for instance. Do you think it's easy sitting around all day collecting disability checks?! Heck no! (I'll let you in on a little secret to being rich like me- I am easily a thousand-aire. All you have to do is contract a life-threatening bone marrow cancer and undergo intense chemo treatments followed by a bone marrow transplant and the inherent 6-12 months of follow up and lifetime check-ups. Piece of cake!) Getting back to the topic at hand, enter the beauty of second mortgages and home equity lines of credit! Free money! No really, I'm not saying you have to or even should bankrupt yourself to contribute to this cause but maybe the kids could go without that 10th Wii-Box-PS5 gaming console brought to you by the MicroSonyTendo conglomerate. I say, let's you and I bring back a wooden toys movement. Better yet, homemade wooden toys.
Incidentally, if W.H. Gates or perhaps M. Jordan or O. Winfrey happen upon this blog and are really bored cleaning the trophy case with $1000 bills or lining their rare Sumatran white-tailed endangered hamster cages with Benjamins, please pinch us off a little sump'n sump'n. I'm sure y'all have a couple mil stuck in the lint trap of your dryers.
Okay... as you can see steroids is good stuff! Seriously, please check out marrowtrek.org. There's not much to the website right now, but since it's early, we are trying to get the word out about this. My people are in contact with people who might know Katie Couric and Stone Phillips as of this writing. In my last blog entry, I so casually slipped in that Jim and Jesse are trekking 3,100 miles over four months. If you really stop to think about this, that's 3,100 freakin' miles over four months! They did this sorta thing once, which makes them manly men. But to do it again takes some degree of brain damage. So if my urgings don't make you feel compelled to contribute, do it for these two poor souls... Man, if I can just get every one of my friends and acquaintances to contribute a grand total of just a single dollar, our project wouldn't even get off the ground since I've counted about 5 friends, and that's including Karen. But you, you can really make a difference.
Alright, I promise not to bombard you too much about the Marrow Trek (at least, not until it gets closer to "go" time). A little update on me... the hemorrhagic cystitis issue is improving, meaning I run around the house pantsless only about once an hour instead of two or three. The skin rash I've had from graft-versus-host disease has gotten a little worse as they have been decreasing my immunosuppression in the name of more effectively treating the CMV. Bloodwork for CMV was drawn again today and I should know the results by tomorrow. We're all praying really hard that it's finally going to be negative. Otherwise, I'll have to switch to a different IV drug which has to be monitored even more carefully.
That's it.
Joe
Sunday, March 04, 2007
Marrow Trek
I'm blogging this time to implore you to support a good (no, dare I say great) cause. One of my best friends from college, Jim Schoettler, called me a few weeks ago to obtain my input on a "project" he was working on. Knowing Jim, I was pretty sure this project involved snots and a dartboard, but I was mildly shocked and quite touched when he revealed his heart and his motivation to raise awareness about bone marrow transplants and the need for bone marrow donors. I enthusiastically jumped on board his project as well. Jim, of his own volition, contacted the Dana Farber Cancer Institute for sponsorship. I also put him in touch with the Cammy Lee Leukemia Foundation (who helped me with several bone marrow drives). This summer, Jim and another close friend of his, Jesse, from our college days (both experienced expert hikers) are planning a 4 month 3,100 mile trek across the Continental Divide Trail spanning the Mexican border to the Canadian border. They are asking for pledges (monetary and otherwise) for their trek with all proceeds going to support the above organizations. We are also currently working on getting more big organizations/corporations for sponsorship. With any luck, Jim and Jesse will be donning jumpsuits a la NASCAR style on their journey! ("Shake and bake") I know you're thinking that mountain goats and lizards and such may not really appreciate Tide or Marlboro or Coors Light logos. In fact, Jim and Jesse may inadvertently be walking targets for horny moose, but that is neither here nor there... All joking aside, Jim has set up a website, marrowtrek.org or marrowtrek.com, where you can find out more details and follow their progress. Incidentally, Jim is a great photographer (check out jdschoettler.com), so you may enjoy some amazing pictures along the way.
If you look carefully at the website, I am on the "executive" committee (aka CEO, aka the Big Kahuna, aka the Face of cancer). Bio available shortly... Actually, I think my official title is "peon". Checks, of course, can be made payable to "The Joseph Lin Personal Fund". Just kidding! (Note: the preceding was a JOKE). The donation process is laid out easily on the website. Within a week or so, a comically gigantic needle will be sent to you. All you have to do is stick it in the meaty part of your thigh... Again, just kidding. Just check out the website.
Recently, besides me, another close friend of Jim's has had an urgent need for a bone marrow transplant and is now still currently looking for a donor. While I have been extremely fortunate to find my donor and be transplanted within six months, many people out there have had to search for years or have died in the search process. There is something like a 1 in 20,000 chance that a patient finds a perfect match and the odds are even worse for minorities and mixed races. I think I've said this before, but only one person has ever found a match through their own bone marrow drive efforts. The numbers of people registered in the National Marrow Donor Program (NMDP) are unacceptably low. So, please please please consider contributing to this cause, if not monetarily to help support organizations like CLLF and Dana Farber to fund drives and research, then to motivate yourself and others to be put on the registry. I obviously have been a beneficiary of such efforts of other people, and I would be remiss, especially as a doctor myself, not to encourage this.
Jim and I were roommates for three years at Stanford. He's a straight up good guy so I can vouch for him. His mother, our treasurer on this endeavor, was the former Lieutenant Governor and Treasurer of Colorado for goodness sake, so you can be sure the money is going to the right place. Jim's a free spirit and one of the brightest people I know. When he commits himself to hiking over 3000 miles and helping good causes along the way, you can be sure he'll do it. And Jesse, even though I don't know him quite as well, I know he is cut from the same mold. In fact, these guys have done similar hikes before. If you look up "Colorado mountain man" in the dictionary, well, you'd find a definition of a male who hails from the Western region of the Unites States where there are many areas comprised of impressive natural elevations above the earth's surface. No, of course, you would see a picture of Jim as the definition. He's ruggedly handsome, physically fit, and maybe even available. I tell you, if I were a woman (wait a sec...), I'd probably marry him on the spot.
Whoa, I'm totally getting sidetracked here... In all seriousness, please check out marrowtrek.org. And don't just check it out, make it your home.
It would rock my world.
Joe
