Sunday, December 8, 2013

The Good, the bad, and the balding

I'm going to be honest, I've been avoiding blogging for the last few months for a number of reasons.

To begin with, I've been working the kind of hours that would make you, gentle reader, fuss at me with ferocity. It is a very busy time of year in my industry and my work ethic refuses to allow me to leave coworkers in the lurch. I'm not being forced to work the hours that I'm working by my bosses. I'm working the extra hours from the comfort of my home, through a virtual desktop which is much nicer than being chained to a desk, lest you get the wrong idea, and doing it of my own volition. There are deadlines to be met and I don't want to be the one holding things up.

Since my steroid taper has hit a certain level, I have been experiencing a constant state of fatigue. Not cancer fatigue, or chemo fatigue. The kind of fatigue I'm living through is related to the fact that my adrenal glands went dormant shortly after I went on high-dose steroids in July. The steroids were synthetically producing the hormones that the adrenal glands would have been, and so those sweet glands went into hibernation. Then they got lazy and stopped doing anything altogether. Once I tapered down to about 15 mg of prednisone per day, I noticed that my hair was thinning and that I was beginning to put on weight.

The last time I was on high-dose steroids for GvHD of the liver and lungs, my face went cushingoid (think moon pie) and my weight sky-rocketed 64 pounds in a very short period of time. This time, no puffy face and my weight remained stable until the prednisone slowly tapered from 60 mg per day to 15mg daily. It's like a switch went off. By the time my taper reached 10 mg per day, I managed to gain 17 pounds and most of my hair fell out. This is because the steroids aren't producing enough hormones to sustain what my body needs and my adrenal glands are still dormant. I look like I'm going through chemo again. In fact, several people have approached me with worry over whether the chemo is working. I still haven't figured out how to distill the answer as to why I appear as I do into a single sentence. I'm not going through chemo. My adrenal glands are being giant turds.

Now let me work my way back from my most recent visit to MDA.

Last week, I had a CT scan of my chest to get a better understanding of why the GvHD in my lungs hasn't resolved to a degree that makes the pulmonary specialist and my transplant doctor happy. I also had another pulmonary function test (PFT). The last 3 PFTs showed my lung capacity at 55%. That's not good. It should have been improving, even if only by a very little each time. No dice. When I saw my transplant doctor the week before this, she remarked that we'd be doing a lung biopsy if there wasn't significant improvement. Her thinking was that there may have been something other than GvHD of the lungs involved. Imagine my delight at the thought of getting to live through another lung biopsy. They are not fun and you cough your way through the entire event, even though you're under anesthesia. You cough so much, that you often wake yourself up during the event, which is why the anesthesiologist is on standby with more sleepy-time juice.

I got to see my most recent CT scan next to the one taken in July, while I was in the hospital with lung GvHD and pneumonia. There is improvement. You can still see areas of what are known as ground-glass opacity in my lungs. This refers to areas where pneumonia is still present. It's not as bad as it was, but there's still pneumonia in both lungs. There are also still infiltrates, and I am not surprised given my inability to breathe.

Before I go any further, I should mention that my transplant doctor instructed me to start taking the stairs up to my second floor office at work. Now that Chris and I work for the same company, he makes sure that I'm doing it. I'm out of breath by the time I reach the second floor landing, but I don't need my rescue inhaler anymore. I should also probably admit to bumping up my breathing treatments to twice a day.

When I was first given the nebulizer, I was instructed to have treatments twice a day. I did while I was at home recuperating. Once I went back to work, it became impossible and I was given permission to cut back to once a day. After my third PFT came back unchanged, I rearranged my daily schedule so that I could bump back up to 2 a day. Don't ask me how, but every day is a pain in the butt as a result of it.

No complaints, and here's why: my latest PFT showed that my lung capacity is up to 67%. This is nowhere near normal. A healthy person's capacity falls somewhere between 85-100%. I will never ever reach 85% again in my lifetime. Too much scar tissue in my lungs. I'm aiming for as high as I can get.

I'm hoping that once my transplant doctor gets the results, the lung biopsy falls off the table. As for my pulmonary team, they told me to keep doing what I'm doing and they'll see me in 3 months. Big smiley face there.

Here's the bit that I haven't really wanted to write about. 3 days before my birthday in October, Chris and I met with the reproductive endocrinologist recently hired by MDA. She specializes in cancer patients and their fertility. I have had my fertility tested twice before. After my first transplant, I was still able to produce eggs. After my second transplant, the tests proved inconclusive. It has been the very worst emotional roller coaster you could possibly imagine. Having had cancer 4 times, not to mention 3 different varieties of cancer, was nothing compared to this emotionally.

I'd had a special blood test done the month before. It takes about 3 weeks to process and has to be sent off for interpretation. I cheated before the meeting and looked up the results. The protein they were looking for was immeasurable in my sample. I knew what this meant. The day of the meeting, I also had another transvaginal ultrasound. It took close to 20 minutes for the technician to locate my right ovary. Can you see where all this is headed?

Upon meeting with the very kind doctor, I was told that there was not a single egg follicle left in either ovary. I cannot have children naturally. She did reassure me that I could carry a pregnancy using a donor egg fertilized by Chris. First, I have to kick the lung GvHD to the curb and get off of all of the drugs working to suppress my out of control immune system. This won't happen overnight. At best, maybe sometime late next year we can begin investigating options. Also, Louisiana doesn't have a donor egg program, so I would have to go to Houston to have it done. I've been advised to shop around for fertility clinics since prices and practices vary widely. We've also looked into private and public adoption. The cost of IVF using a donor egg runs roughly the same as private adoption. And trust me when I say donor eggs are not free.

We have time to make the decisions that need to be made. In the meantime, I'm very happy with the reproductive endocrinologist and the game plan she will have in place once I make a decision.

So there you have it. Chris still owes you patient readers part 2 of our meeting with sweet Dana, my donor, and Hung, her husband. He's been busy getting acclimated to his new job, so you may need to prompt him through the comments section.

I'm tired, because of my slowly waking adrenal glands, and consumed with doing everything I can to stay awake during the day. I know there will come a point sometime next year when this is behind me and I get to move on to the next portion of my life when I will forget the harder days and look forward to posting more about the things I now welcome as normal.

Monday, November 18, 2013

Sorry for the delay

Sorry for the delay everyone.  I promise Part 2 is on the way.  I have recently started a new job and lots of things are in flux at the moment.

Sunday, October 20, 2013

Rafu write-up

Here's a link to a write-up the A3M event we were so lucky to be a part of.

In case you don't want to click through, a copy of the actual piece runs below.


A3M introduces marrow transplant recipients at annual gala.
Ann Gregory (right), accompanied by her husband, Chris, was introduced to her bone marrow donor, Dana Lau, and her husband, Hung.
Ann Gregory (right), accompanied by her husband, Chris, was introduced to her bone marrow donor, Dana Lau, and her husband, Hung.
By J.K. YAMAMOTO, Rafu Staff Writer
When someone says, “You’re a lifesaver,” it’s usually a figure of speech. But when special guests said it at Asians for Miracle Marrow Matches’ (A3M) annual fundraising gala on Saturday at the Hyatt Regency Downtown Los Angeles, they really meant it.
Emcee Denise Dador from ABC7 Eyewitness News.
Emcee Denise Dador from ABC7 Eyewitness News.
A3M is dedicated to finding bone marrow donors for Asian American patients with leukemia and other life-threatening blood diseases. A tissue match between donor and patient is needed for a successful transplant, and the best chance of finding a match is among family members or people of the same ethnic/racial background.
“There’s a lot of things that have changed since the inception of A3M 22 years ago … Back in 1991 there were literally no Asians in the marrow registry,” said A3M Director Shin Ito. “If you were of Asian descent and you had leukemia and you needed a marrow transplant, you pretty much had no chance.
“Now flash-forward to 2013. There are over 750,000 donors of Asian Pacific Islander descent in the marrow registry. That’s wonderful … but at the same time there are still far too many patients that unfortunately just don’t make it, so that’s why we still need to do what we’re doing …
“Every year, 12,000 patients need a marrow transplant … 70 percent of them need to search the marrow registry because they don’t have a sibling match. A3M is able to do 600 drives a year … Over 15,000 donors register at A3m drives every year. Last year 59 donors who registered at A3M drives donated their marrow or blood stem cells to give patients a second chance … When I first joined A3M six years ago, there were only 25 people who registered at A3M drives and donated their marrow or blood stem cells.”
A3M has a tradition of introducing patients to their donors during its annual gala, and this year was no exception.
The patient was Ann Gregory, who is of English/Irish descent on her father’s side and Vietnamese/Chinese on her mother’s side. She was diagnosed in 2007 with acute lymphoblastic leukemia (ALL). In the absence of a suitable marrow donor, she had an umbilical cord blood transplant after a legal and media battle with her insurance company, which initially called the procedure experimental and refused to cover it.
“I managed to stay in recovery for 13 months before a relapse … It bought me enough time for a donor to be found, and I’m just so grateful,” said Gregory, who was accompanied by her husband, Chris.
The donor was Dana Lau, who registered 16 years ago during a marrow drive for 3-year-old Alana Dung in Hawaii. Lau was not a match for Alana, who later passed away, but 10 years later had another chance to save a life when she was identified as a near-match for Gregory.
“We weren’t a perfect match on the human leukocyte antigen (HLA) front, but she was perfect enough to save my life,” Gregory said. “I just want her to know that she helped facilitate a miracle and I’ll be forever grateful for her selflessness.”
“The Hawaii Bone Marrow Registry team was so helpful and supportive in trying to accommodate my busy life of being a teacher, wife and mother … I remember the love and sometimes protective support of my family and close friends,” said Lau, who was accompanied by her husband, Hung.
Although donors have the option to decline, Lau said, “Ultimately, one thought guided me: How could I not help to save someone else’s life?”
The two couples embraced on stage. Gregory told Lau, “You made this possible. Five years later I’m standing here because of you. I have a lot more years with my best friend, the love of my life.”
Lau said she was thankful for the opportunity and asked Gregory and her husband to “live your days and your lives to the fullest.”
Noting that mixed ancestry makes it harder to find a donor, Gregory told the audience, “That’s why it’s so important for organizations like A3M and all the other ones out there (to be) running drives and registering people of mixed heritage, and I’m just so grateful that they exist.”
Emcee Denise Dador, health specialist for ABC7 Eyewitness News, said, “I’ve met patients before they’ve had their transplants, before they found their match. The sadness, the desperation that you feel when you talk to them … I know how difficult and critical it is to find a match for many.”
She also noted that in one case, a donor’s husband refused to let her go through with the procedure because he feared, incorrectly, that it would affect her ability to have children. Dador stressed the importance of clearing up misconceptions about marrow transplants.
Dador has been honored by the National Marrow Donor Program for helping to promote A3M’s mission.
From left: Bone marrow recipients William Ko, Jenny Hirata, Celine DeGuzman, Seung Hong, David Bao, Kaili Nguyen and Nancy Sakakura.
From left: Bone marrow recipients William Ko, Jenny Hirata, Celine DeGuzman, Seung Hong, David Bao, Kaili Nguyen and Nancy Sakakura.
Seven Stories
Another success story is Nancy Sakakura, a wife and mother who was diagnosed with myelodysplastic syndrome (MDS) in 2002. Already registered as a donor with A3M, she instead became the focus patient of a massive donor recruitment campaign. While her condition deteriorated, two people were identified as matching donors, but both turned out to be unavailable. Finally, a 23-year-old from Japan donated marrow that was successfully transplanted in 2006
Dr. Ryotaro Nakamura of CIty of Hope has worked with A3M patients.
Dr. Ryotaro Nakamura of CIty of Hope has worked with A3M patients.
“Being sick with a serious illness is something that most people don’t think about,” Sakakura remarked. “When it happens, it’s surreal. There are emotional hurdles as well as financial and logistical challenges. Many families go through extreme financial hardship trying to save a family member, some declare bankruptcy, some divorce, some relocate with no new jobs lined up in order to seek treatment, some people simply give up …
“A3M was really there for me during my journey … A3M helped channel the array of emotions into positive energy keeping us focused on finding that one special donor.”
Sakakura introduced other patients who owe their lives to A3M:
• William Ko was diagnosed with chronic myelogenous leukemia (CML) at age 33. Roselle Espiritu was found to be a match and the transplant was done in 1994. Ko, who also survived a mild heart attack last year, has sons who are 20 and 23 years old.
• Jenny Hirata was diagnosed with acute myelogenous leukemia (AML) at age 9. After chemotherapy and blood and platelet transfusions, the cancer returned. Cynthia Yamaguchi, who registered at a Krafty Delights craft fair, was found to be a match and the transplant took place in 1993. Hirata now performs with a taiko group and is pursuing a master’s degree in speech therapy at CSU Northridge.
“When I was in the hospital or even when I was at school and having kids stare at me, my one wish was to have a normal life,” she said. “I can say that I’m living that right now and I have been for a while. I have my donor Cynthia to thank for that and I also have A3M to thank … Having all of these booths at different events really does save lives.”
• Seung Hong was diagnosed with CML in 1999. A donor was found through A3M, but the man had a medical condition that did not allow him to undergo the procedure. After his condition progressed to AML, another match was found and the transplant was done in 2000. As a result, he was able to celebrate his 60thbirthday, walk down the aisle with his daughter, and spend time with his four grandchildren.
• Celine DeGuzman was found to be suffering from aplastic anemia when she was only 8 months old. Luckily, she found a donor in Hawaii in less than six months. Thirteen years later, she is attending junior high school and wants to become a nurse. She met her donor for the first time at an A3M event.
• Christine Pechera was given only a month to live when she was diagnosed with cancer. After enduring high-dose chemotherapy, full-body radiation and a bone marrow transplant, she suffered a relapse and had to find another donor. Eleven years after her diagnosis, she is happily married and graduating from Pepperdine University with a master’s degree. She also was introduced to her donor at an A3M event. Due to an auto accident, she was unable to attend this year’s gala.
• David Bao, a husband and father, was diagnosed with ALL in 2009 and underwent chemotherapy. He found a match through the Tzu Chi Registry and had his transplant that same year. Last month, he was able to meet his donor in Taiwan.
“The trip out there took 31 hours … I had an opportunity to talk to my donor for about 20 minutes … It was truly worth it. She’s an angel,” he said.
• Kaili Nguyen was diagnosed with MDS at age 3. After several cycles of chemotherapy, she found a match through A3M. She suffered a relapse a few months after the transplant, and the doctor gave her more of the donor’s stem cells. Three years later, she is a second-grader who wants to be a pediatrician. She and her donor recently took a trip to San Francisco.
Sakakura also introduced “gifted, amazing, committed doctors” from City of Hope who have treated A3M patients: Auayporn Nademanee, Ryotaro Nakamura, Pablo Parker and Chatchada Karanes.
“I really respect and honor those people who … donate what they have,” Nakamura said. “Without those cells from all these donors, we are no use, actually … You are the ones that keep us moving forward.”
From left: Gene Kanamori,  event co-chair; representing the Dale M. Inouye Foundation, Shannon Kitani (for Harvey Kitani), Randy Kiehm, Scott Mibu and Cathie Tani; A3M Director Shin Ito.
From left: Gene Kanamori, event co-chair; representing the Dale M. Inouye Foundation, Shannon Kitani (for Harvey Kitani), Randy Kiehm, Scott Mibu and Cathie Tani; A3M Director Shin Ito.
Remembering Dale
The Human Spirit Award was presented to the founders of the Dale M. Inouye (DMI) Foundation: Randy Kiehm, Harvey Kitani (represented by his wife, Shannon), Scott Mibu and Cathie Tani. Established in memory of Dale Inouye, who died of leukemia in 2008 at the age of 9, the foundation raises funds for cancer care and cancer research through a youth basketball tournament and a golf tournament, and collaborates with A3M in conducting donor registration drives.
Krissy Kobata is both an A3M volunteer and a patient.
Krissy Kobata is both an A3M volunteer and a patient.
Kiehm, an educator and coach with the L.A. Unified School District, said, “Dale lived his life with uncommon courage, determination, inner strength and fighting spirit … He went to school, played basketball, baseball, golf, he performed hula, he was a Boy Scout … he liked visiting Hawaii. And he did all these things with an uncommon zest and enthusiasm, passion and appreciation
“I for one truly believe that Dale’s life and his passing were meant to inspire others. Julianne Inouye, Dale’s mom, would tell a story that got me thinking and led me to believe this. She would say at some point in Dale’s life he became aware of his fate and he had this conversation with his mom. He asked his mom to not forget him, and he asked his mom to not let others forget him.
“I thought, what if … he was thinking how his life could inspire others to better appreciate life or to be more courageous in their life, how his life could inspire others to join the fight against cancer? … He inspired me to do these things. If you think it’s a far-fetched idea because he was just a kid … I simply say that Dale was probably in a place that none of us have ever been before, and maybe in that place he had a clarity that none of us has ever had.”
Tani, an LAUSD educator and longtime friend and UCLA classmate of Dale’s mother, said that during the basketball tournament, held at Cal State Dominguez Hills in August for boys and girls in grades 4 through 8, one player from each grade level receives the Dale Inouye Inner Strength Award. “That player is nominated by his coaches and selected by a committee for a player who demonstrates the kind of life qualities that Dale shared with us, his perseverance, his gratitude to life and his love for his family and friends.”
Krissy Kobata, who is both an A3M volunteer and a patient, closed the program by saying, “There are still patients like me who are looking. My search has been six years … I’m very fortunate that I don’t look sick, I don’t feel sick. My situation is relatively stable for the most part, although you never know what could happen. But of all the people I met throughout the process that I have been diagnosed, all the patients, I’m actually the last one … due to the fact that they couldn’t find donors. It’s a very scary thing.”
She said of A3M, “These people who work day in and day out to try to find people donors — they mean something, and your support means something … Keep spreading the word to friends.”
Other speakers included Gene Kanamori, who co-chaired the event with his wife, Vickie. Entertainment was provided by singer Keiko Kawashima and pianist Scott Nagatani from the Grateful Crane Ensemble. The program also included a silent auction, a marrow donor drive, and a raffle drawing with two round-trip, first-class tickets from American Airlines (represented by Nancy Matsui) as the grand prize.
Photos by J.K. YAMAMOTO/Rafu Shimpo

Sunday, October 13, 2013

Reunification - Part 1

Last week, Ann and I travelled to Los Angeles at the invitation of Asians for Miracle Marrow Matches (A3M) to meet Ann's donor at a gala event.

In the last post I said that this feels more like an ending of sorts.  But, apart from that rather vague  description exactly where does one start in describing, let alone summing up the finale to what has been the most life changing episode in our lives?

To avoid breaking with tradition, I'll start with last Friday.  We boarded a flight  from Baton Rouge to Houston and then to LA.  Both of us nervous and a little giddy at what was coming up.  We had known about the A3M event for several weeks and had avoided saying anything about it on the blog, because anything can happen.

Exhibit one to this is Ann's latest bout with GVHD and pneumonia which landed her in the hospital.  Right after that was the "5 Year" visit, the one where you're supposed to get the "golden handshake"; the one where the doctor says, "you look great" and "thanks for coming in", or most importantly "you survived / beat the odds /  are cured" or some combination of words that equates to those sentiments.  Ergo, posting that we were poised to take a "victory lap" with so many plates spinning seemed like tempting fate.

So last Friday, we boarded a flight from Baton Rouge to Los Angeles by way of Houston.  The trip was anticlimactic to say the least.  Modern air travel is only palatable because of the mass adoption of the smart phone and audio and video compression algorithms.  5 fours later and 2 hours ahead of what time we were used to, we arrived at LAX.

We were collected at baggage claim by Ahn Nguyen and her husband Ted (from A3M).  As it turns out they were there not just to meet us but also to prevent us from accidentally bumping into Ann's donor and family who were flying the same airline from a different destintion and only about 10 minutes behind us.  We were clueless as to the subterfuge, and just ready get our bags, and go.  Ann was suffering the effects of jet-lag at this point much worse than I was. So after a great dinner and a brief tour of the city, we checked into out hotel room and almost collapsed.  

The next day, the big event was scheduled for the evening, which left us most of the day to mess around.  We did a little walking around downtown LA before Ann started worrying about her breathing.  That sent us back to the hotel, but not before seeing most of downtown LA barricaded off by private security and teamsters who were there apparently to shoot a Kia Soul commercial.  The film crews, cameras and Mercedes fitted out with steady cams were neat to look at - the day glow safety orange so much.  

Once back at the hotel we started getting ready for the big night. 

Remember what it felt like to go out on a first date?  Or junior Prom?  Yeah - that picture just about sums it up.  Nervous was the secret word of the day.  Ann and I had joked several times about what would happen if we met her donor and she didn't like us.  All joking aside, meeting Ann's donor wasn't just a very real possibility.  In a matter of about three hours, it was a certainty.  Don't think the thought of breaking my leg and having to go to the hospital didn't occur to me - it did.

Before we could flee, and spare the world from what unwholesome despicable people we were, Anh turned up at our room and ushered us down to the silent auction A3M was holding.

We arrived and ran into Nancy Sakakura!  Long time readers of the blog will recognize Nancy as one of the people who comments most frequently and our history and friendship goes all the way back to the darkest days of 2007.  Nancy was the 1st patient I ever reached to out who responded.  She gave Ann and me such hope that the odds could be beaten, bone marrow transplants could be survived and life could begin to "look" normal once again.  Nancy and her blog about her transplant at City of Hope gave us a road map of what treatment, transplant, engraftment and recovery would look like.  I will be forever grateful to her for taking the time to share with us, because without her friendship everything would have been so much darker.

OK, so this is a good place to draw Part 1 to a close.  Next update we have the event and meeting two of the most genuine and precious people in the world.

Tuesday, October 8, 2013

Special Update Coming

Chris here -

It has been a long time since I blogged and I must apologize for my protracted absence.  I am really excited that we will be able to share some really important news with you soon.  I don't mean to tease but there are a few "i"s to dot and "t"s to cross before it goes out.

Lets just say that it is the end of one part of our journey and the beginning of something new and beautiful.  I have been searching for something profound to say, and a bit enigmatic at the same time.  I think its best if I leave it to someone wittier than me by far...

 “Out of the unreal shadows of the night comes back the real life that we had known”  - Oscar Wilde

Saturday, August 31, 2013

Another 2 weeks

Another 2 weeks has passed and so has another marathon session at MD Anderson. On Wednesday, I saw my transplant doctor. I'm still improving and it's still happening at a glacial pace. Dr. K. said that my lungs sound clear, which means that the insidious crackle in my breathing is resolving and gas is moving around inside my lungs. She also told me to stop my breathing treatments.

On Thursday, I had a host of tests to check my lungs: X-rays, full pulmonary function test, 6 minute walk. My X-ray looked like someone had smeared vaseline across the lower lobes of both lungs. That's residual pneumonia and I've been told that although I don't have symptoms, the pneumonia can linger in my lungs for more than 6 months. I also got to see the results of my latest CT scan. My endocrinologist showed me the pockets of pneumonia versus the active Graft versus Host Disease in the lung tissue. The GvHD is diffusely spread throughout both lungs and looks likes scattered swabs.

As for the lung tests, it was a mixed bag. My lung volume is 55%. It does make being active difficult and I move much more slowly than I'd like. As for the 6 minute walk, I had to wear a monitor that measured my heart rate and oxygen level while I walked between 2 lines at a normal pace for 6 minutes. I managed to successfully complete the test within the range allowed for healthy people.

Thursday was also pulmonary specialist and endocrinologist day. The pulmonary team also said that my lungs sounded clear and that I need to keep doing the breathing treatments. Pulmonary trumps transplant on this issue. I don't have any obstructions in my lungs, but I do have restrictions. My lungs cannot inflate to full capacity. This is likely due to a combination of scar tissue and stiffening of lung tissue. I have to see them again in 3 months and repeat the pulmonary function tests.

My endocrinologist is pleased that I've managed to keep my glucose in check through diet alone. This means no extra meds to control it or a need to test my glucose or give myself insulin so long as I can continue to control things. My cholesterol is slightly elevated: 215. High normal is 200. This is not unexpected even though I take a prescription to control my cholesterol. My near-vegetarian mother has always had high cholesterol, even on medication. I'm genetically predisposed.

There is a caveat. My healthy cholesterol is twice as high as a normal healthy person's. Dr. J. told me that this is like hitting a genetic jackpot. I'll take it. He also explained that the number is factored into your overall cholesterol metric and it is skewing my overall number high. Long story short, I'm in good shape. No changes to my meds and I'm to continue eating a healthy diet and continue exercising.

That's the other thing. I tend to pop awake between 4 and 5 in the morning. After several mornings of this, I decided to try walking on the treadmill since I wasn't doing anything else. It's been a week, and I'm walking 40 minutes each morning and averaging 1.5 miles. It's really self preservation. I'm trying to hold off steroid weight and improve or at the very least, maintain my lung function.

I'll leave you all with a few last things. What most people don't realize is that every time a transplant survivor contracts a respiratory infection, pneumonia, or lung GvHD, scar tissue develops in the lungs. It doesn't go away. It happens with each new infection. Steroids, immunosuppressants, and scar tissue leave me open to catching whatever bug is circulating and so I have to be extra careful around crowds. My lungs will never achieve 100% function again.

So, please keep in mind that there are people that you will come into contact with on a regular basis who may not look actively sick, or they may not be acting in a way that you perceive to be ill, but they are the very most susceptible individuals. If you're sick, or have come into contact with a sick person, or have a sick child, employ the 3 foot rule. Get vaccinated if you're healthy enough to, especially with flu season right around the corner. Remember, people tell me I don't look sick, but another respiratory infection means I'm right back in the hospital and this begins all over again.

Saturday, August 17, 2013

2 Week Update

I had a 2 week follow-up with Dr. K. concerning the lung GvHD and as far as she's concerned, things are headed in the right direction. She said my lungs sound better, which is a very good thing.

 I am suffering from side effects from steroids, which is not such a good thing. I have tremors in my extremities, skin thinning, and if I stand for too long, my entire body shakes. The good news in all of this is that I've managed to restrain the ravenous urge to eat everything in sight that comes with high-dose oral steroids. If I can't stand it, I'll have a piece of fruit or a bottle of water. It's a poor substitute for the extra-large deep dish pizza I want to inhale in one sitting, but it will do for now. My skin is so thin you can see my veins and if I'm not careful, a light tap will leave a bruise.

I'm also not sleeping. Steroids wreck your adrenal glands. I've spent the better part of a month existing on 3 to 4 hours of nonconsecutive sleep per night. I'm so jittery during the day that I can't nap. I've been working with both my MDA and my local team to figure it out. Ativan gets me 3 hours of sleep if I'm lucky. My local prescribed 15 mg of restoril. It gave me 3 hours just like the Ativan. He bumped it up to 30 mg and ironically, it gave me 2 hours of sleep before I popped wide awake for the rest of the day. Nice, right? I can't take ambien because it leaves me feeling sick and disoriented the following day. Benadryl left me drowsy, jittery, and awake. ZzzQuil gave me a whopping 4 hours of nonconsecutive sleep.

As a leukemia patient, I used to get a compounded prescription for a nausea medicine called ABH. It contains Ativan, Benadryl, and haldol. Would knock me out every time, so they started giving it to me the first time I had to be on steroids to help with sleep. Chris suggested it to Dr. K., and given that I was on the verge of a psychotic episode due to lack of sleep and out of control mood swings due to steroids, she was willing to try it. I slept for 7 hours after taking one. Dr. K. also wrote a prescription for Lunesta. My insurance company wants everyone to jump through flaming hoops while singing the Star Spangled Banner backward before approving it, so I can't report on its effectiveness since I can't get my hot little hands on it just yet.

Needless to say, my overall mood is improved thanks to a few days of near normal sleep.

I have another appointment next week. It's an annual that had to be deferred since I was in the hospital in July. The following week I'll follow-up on the lung GvHD with Dr. K. and the pulmonary specialist, as well as my endocrinologist who's currently monitoring me for steroid induced diabetes. I've managed to control my diet well enough that it hasn't become an issue. I did become diabetic the last time I was on steroids and so they are being cautious. I'll also see my head and neck surgeon for a check-up on the whole squamous cell carcinoma of the tongue thing. I was supposed the see her the same week I ended up hospitalized and so that 3 month follow up was also deferred.

I'll update as things occur. For now, my breathing continues to improve. I haven't needed supplemental oxygen in almost 2 weeks. I still get tired easily, but it is improving. And people still tell me that I don't look sick. Go figure.

Friday, August 2, 2013

In this skin

In this skin of mine, at a glance, you'd never guess that I'm chronically ill.

Friends, doctors, nurses, and strangers all say the same thing, "You don't look sick."

What does being sick look like?

When the chronic graft versus host disease began to slowly flare up in my lungs back in June, I didn't look any different to friends and coworkers. Unless you knew what to look for. My office is on the second floor of the building and I would take the stairs every day. One day I started panting once I reached the top landing. And then it became a daily occurrence. I couldn't catch my breath to make small talk with passing coworkers, so I'd wave hello and head to my cubicle. People who'd encounter me at the top of the stairs would joke that it looked like I'd just run a sprint.

Of course I hadn't. My lungs were filling with infiltrates and scar tissue caused by graft versus host disease and compounded by Bronchiolitis Oblibertans Organizing Pneumonia (BOOP for short). It's not something that you can see without the aid of a CT scan.

Then I started losing my voice. And then came the constant coughing. Friends at work who know my history began to get worried. I was finally looking sick.

I'd informed my transplant doctor at MD Anderson back in June as soon as I realized something was wrong. She put me back on inhaled steroids hoping that it had been caught early enough to take care of the problem. 2 weeks later and I was getting worse. I could barely speak above a whisper and the coughing started to sound like a goose in distress. My lungs weren't expanding sufficiently.

I had a follow-up at MDA on 7/10/13. Silly me, I thought I'd get a prescription for high-dose steroids like I did the last time lung GvHD struck in 2010 and be on my way. Lucky for me my transplant doctor is at the top of her game and saw what I couldn't. On top of the lung GvHD and BOOP she suspected a tertiary infection in the lungs and had me admitted to the hospital for tests.

She was right to do it and I am grateful. Bacterial pneumonia managed to take advantage of the ripe situation in my lungs and settled right in.

I began high-dose steroids to deal with the GvHD and BOOP. Because the doctors couldn't know what bacteria had taken up residence in my lungs until cultures were grown, they threw several antibiotics into the mix. After 7 days of trying to cultivate growth, the pathologist only managed to get H Influenza to grow. (This is a bacteria and not the virus responsible for causing flu.)

After 3 days in the hospital, I started needing supplemental oxygen most of the time. I couldn't keep my oxygen saturation level above 90 on my own. Breathing treatments began 4 times a day in the hopes of expanding my airways and clearing out the mucous in my lungs making breathing so much harder on top of everything.

By day 7 I was resigned to being in the hospital indefinitely, and that's when my transplant doctor decided to let me go home with a host of equipment.

I currently have 11 tanks of oxygen in my living room. There's a catalytic converter for when I want to save the tanks for when I need to leave the house. There's an enormous tank of emergency oxygen in my bedroom, just in case. I have my very own nebulizer now and do breathing treatments daily.

Chris bought a pulse-oxmeter so we could monitor my levels throughout the day.

I'm also back up to 26 pills a day. Immunosuppressants, oral steroids, anti-virals, anti-fungals, topical steroid creams and lotions, cholesterol meds, a huge host of antibiotics, multiple steroid inhalers, and sleeping pills. Some are for prophylaxis because the steroids and immunnosuppressants leave me open to easily catching infections.

I also need to see my local oncologist weekly to monitor my blood-work. Many of the drugs I'm on are hard on the liver and kidneys and so toxicity can be an issue.

This past Wednesday I had a follow-up at MDA to gauge the efficacy of the regimen I'm on. The crackling sound in my lungs is improving, which is a step in the right direction. My doctor says that I'm slowly improving. I'll take what I can get. I've still needed supplemental oxygen off and on, which is not so great, but I'm working on it.

There are side effects to all of the drugs, the most prominent of which being that I shake uncontrollably from the steroids. That, and I can't sleep for more that 3 or 4 hours at a time without a sleeping pill because of the oral steroids. It makes for interesting days. Also, there's the constant driving need to eat everything in sight. Steroids. My glucose level is up, too, which may mean temporary diabetes due to steroids. It happened the last time and I won't be surprised if it happens again.

I'll go back to MDA to get re-evaluated in 2 weeks and also see the endocrinologist about the whole diabetes thing. If I can stay off supplemental oxygen for that long, my doctor will let me return to work.

In the meantime, I'm laying low and doing my best not to setback recovery. And if you should happen to run into me on one of my rare outings out of the house, remember, I'm doing my best not to look like a sick person. Feel free to ask me how I am, but please don't tell me that I don't look like anything's wrong. Unless you have x-ray vision you'd never guess my lungs look like someone dumped 2 boxes of cotton swabs in each one.

Sunday, July 14, 2013


I'm without my computer, so this will be short. Dr. K. admitted me to the hospital Wednesday after my clinic visit. It was in order to expedite the tests I needed done on my lungs. I'm really lucky that she persuaded me to do it when I balked.

I'm experiencing a resurgence of lung GvHD which is manifesting as bronchial obliterans organizing pneumonia. The pulmonary specialist who scoped my lungs also did a lung wash and found 3 distinct strains of bacteria that didn't belong. They're trying to grow the cultures in order to identify the strains. This means I also have bacterial pneumonia. I cannot recommend it.

I'm getting lots of antibiotics and steroids to treat this. I'm also getting supplemental oxygen because I can't maintain a normal level of oxygen saturation. Breathing treatments started a few days ago and seem to be helping. I can't say when I'll be released from the hospital, but I can say the rounding physicians feel that the prognosis is good.

I'll feel much better when I finally manage to walk to the bathroom, 6 ft away, and back without wanting to pass out.

Sunday, July 7, 2013

When it's your lungs

A lot of people believe that once you have a bone marrow transplant, your major health issues will be resolved. No more cancer means no more problems. These people are horribly misinformed.

I'm currently struggling with graft versus host disease of the lungs. Again. Things have been gradually getting worse. I've begun to feel a familiar pressure in my abdomen on the upper right side, just under my rib cage. It's similar to the feeling I had when graft versus host disease began to affect my liver.

I emailed my transplant team about my inability to breathe on Thursday. On Friday, Chris and I began playing phone tag with my various nurses and PAs. My transplant doctor was out of the country. My local oncologist was out of town. The doctor covering for him would be out of the office over the weekend.

Fortunately, my transplant doctor's PA is a champ. Long story short, I narrowly avoided being put on a daily dose of 120mg of prednisone by the doctor covering for my transplant doctor. He's never treated me and so he's not familiar with my history involving steroids. I'm hyper-sensitive. It can be a problem. My PA managed to get through to Dr. K. who will see me when she returns to clinic on Wednesday. I will have tests. Experience tells me that there will be chest x-rays and CT scans. I will probably need lung and liver biopsies. I'm not thrilled by the prospect of 2 more surgeries, but I understand that the specialists need to see what's going on in my body.

I just want to be able to breathe again. Scratch that. I want to be able to walk and talk and breathe without feeling like I've run a marathon after taking 20 steps.

I probably won't be up to blogging on Wednesday, but I will update throughout the day on twitter.

Monday, June 10, 2013

A little more of that

Last Wednesday marked yet another three-month follow-up visit at MD Anderson. This time around I had my patient loyalty card punched in the stemcell clinic. It should have been a routine visit full of all the routine things you get to do post bone marrow transplant. Mostly, it was.

My blood counts were excellent, with nearly everything in the very normal range. 

My breathing, however, is not so good. Ever since my initial diagnosis of GvHD in the lungs, I've had a small amount of trouble breathing. High humidity makes it hard to breathe. Allergies make it hard to breath. Extremes in temperature equal breathing torture. Up until a few weeks ago, it was a small thing that I'd grown used to. Roughly three weeks ago, I noticed that climbing stairs would leave me winded. I thought it had something to do with the humidity. When the breathlessness started occurring on a regular basis after climbing the stairs at work, I realized that the GvHD in my lungs was trying to make a comeback. The very last thing I want is a little more of that.

My lungs are filled with scar tissue from the last time I had GvHD there. It gets better, but it doesn't go away. I had a routine pulmonary function test in March. It was almost normal, which is a very long way from the 50% lung capacity I was lurching around with in 2010.

Dr. K. ordered a PFT for me after I saw her Wednesday. I got the results a few hours later while I was on the road home. Diminished lung function. GvHD. I was told to resume the steroid inhaler I set aside three months ago.

If I'm lucky, the GvHD will respond and I will have shown an improvement by my next visit with Dr. K. in September. The last thing I want to do is go back on high-dose oral steroids. It's likely what will happen, though. 

I'm also displaying signs of chronic GvHD on my hands. All of my fingertips are torn and cracking. No amount of moisturizer helps. 

My next visit to MDA is scheduled for July. Go figure, it's another three-month follow-up. The Head and Neck center own my dance card that day.

Tuesday, April 16, 2013

Where things stand

Where do I begin? It's been over 4 months since the last post and during that time I've been trying to fly below the radar. My tongue has healed, although it is still numb along the side from which the tumor was removed. I can't taste anything on that side, which makes meals an adventure in blandness and texture. I've been reassured that my ability to taste will return in time.

I contracted an upper respiratory infection which required me to go back on inhaled steroids. For those of you who are new to my blog, I'm prone to GvHD of the lungs. It's horrible and fills my lungs with infiltrates and reduces my ability to breathe. It's taken me over a month to recover from a virus that wouldn't have made much of an impact on me pre-cancer.

I saw my transplant doctor in February and she seemed pleased with my progress. I was on track to being able to space my visits with Dr. K. out to six month intervals last year. Since I presented with cancer number 3 (leukemia, PTLD [lymphoma], and now squamous cell carcinoma for those of you keeping count) last December, my leash has been reeled back in and I will continue to see Dr. K. every 3 months. She will continue to monitor my lungs and I will continue to have pulmonary function tests every few months.

Yesterday, I saw Dr. G., my head and neck oncologist at MDA. She spent a good deal of time looking in my mouth and feeling around for any anomalies. She didn't find anything, which is a very good thing. As a matter of course, I will have to see her every 3 months for the time being. She's being cautious and I am grateful for it.

In September, I'll be celebrating the 5 year anniversary of my second bone marrow transplant. It's significant in the same way that turning 18 is significant to a teenager. It signifies that I will have managed to move past a statistical hurdle and that according to published studies, the chance of a recurrence of leukemia has been minimized. This is the time when people will start throwing around the C word--cured.

I get twitchy when people want to pat me on the back for this milestone. Cured isn't a dirty word, it just comes with a lot of baggage for me. I've had cancer 4 times since 2007. 3 distinct types of cancer. I live with Graft versus Host Disease. I'm more comfortable with the term, "No evidence of residual disease."

5 years out means Chris and I can seriously look into starting a family. We've been discussing several options and once we're able to move forward, I'll write more about the process. This leads me to the final bit of information I learned during my check-up yesterday. While discussing the impact that this latest cancer occurrence has on the possibility of adopting children, Dr. G. disclosed that Chris and I were the first patients to bring it up to her. She explained that my most recent event shouldn't be a problem. In fact, by the time I make it 4 years out from the initial diagnosis of squamous cell carcinoma, my doctors will be on the lookout for a different kind of cancer.

I told Dr. G. that we were in luck because squamous cell carcinoma was that other cancer they were looking for.

Are you getting a sense of why I get a little funny about the C word? Lest you think I'm living under a dark cloud concerning my future, let me assure that I'm not. I don't plan on living my life waiting for the other shoe to drop. I'll deal with things when and if they happen and not waste any time worrying about what might be.

Monday, January 21, 2013

Six weeks later

It's been a little over six weeks since I had the partial glossectomy and I'm still dealing with healing. I have survived to tell you that one of the helpful little chestnuts people kept repeating to me from the very beginning of this newest cancer odyssey does not necessarily hold true. The tongue does not heal as quickly as you would believe. Yes, the tongue is a very vascular rascal. That fact should lead to faster healing.

When it's your tongue post glossectomy, all bets are off. Time stands still and misery becomes a near constant companion. I lived on protein shakes and later, applesauce until I was finally able to manage solid food on Christmas day. There is still a small hole on the side of my tongue and I am constantly aware that something's not quite right with the way my tongue feels in my mouth. The sensation will diminish with time, I'm told. I've also been told that the perpetual tenderness on that side will get better the further away from surgery I get.

I saw the head and neck specialist at MDA last Monday. She's very pleased at how well everything looks. I'm even more pleased to report that the final pathology report showed clean margins. It would appear that the clever surgeons got the bugger.

Some of you might remember that I met with genetic counselors before the surgery. They suspected that there was a very tiny possibility that I could carry the genome for Fanconi's anemia. I don't have any of the obvious physical signs that usually accompany the disorder. The reason they kept circling back to it is that I've had leukemia and squamous cell carcinoma and I'm younger than the demographic that usually present with both things. Don't forget that I also presented with a chromosomal abnormality each time I presented with leukemia. Then there was the PTLD. What I'm getting at is that my chromosomes like to get funky and know how to party.

A special kit was procured in order to test me for this newest possible affliction. Because I've had a cord blood transplant and a bone marrow transplant, the only way an original sample of my DNA could be procured was through a skin punch biopsy. I'll spare you the gory details and just tell you that it did not go well. The nurse opted not to put a stitch in the site--I've had multiple skin punch biopsies in the past and the PA always put a stitch in. Instead, I got steri-strips. They fell off the next day, which wasn't supposed to happen. I ended up seeing the internist that was subbing for my regular doctor 2 days later only to be told that nothing could be done and they should have put a stitch in it. No kidding.

I should find out about the test results in a month. If I do carry the gene, then the doctors will have a better idea of what other cancers to monitor me for. It is a never ending adventure where the rides suck.

Because I'm a glutton for wacky tests, I also had a pulmonary function test immediately after the biopsy. I've been on inhaled steroids for almost 3 years because of GvHD of the lungs. It's become a bit of a woobie for me. In the world of transplant survivors, GvHD of the lungs is one of the scarier developments. I remember all too well those horrible early days when taking 5 steps made me want to pass out.

After 3 years of PFTs, I finally managed to secure a normal result. I should be happy about it. In fact, I'm still a bit skittish about it. The pulmonary specialist's PA told me to discontinue the steroids. I've been off for just under a week and I keep waiting for the first signs of breathlessness. I can't help myself. If I start coughing, or get a respiratory infection, then I have to restart the inhaler immediately and call the specialist. I'll have another PFT in March to see if I'm maintaining this new breathing normal. Fingers are firmly crossed.

So there you have it. Work is keeping me incredibly busy and that is a very wonderful thing. Chris is well and the cats continue to run the show. What more could I ask for?