This is dedicated to Sue.

Through my father's illness, I have had the chance to meet amazing people. As my father and I waited for the doctor, I saw this lady and her husband that looked extremely familiar. I knew who she was because I was following her blog for some time. I hesitated to say introduce myself because I was a bit intimidated. When my dad's name was called, we walked through the hall and I happen to see her again in a room. At that moment, I said to myself 'what the heck,' and decided to introduce myself. And I am so happy that I did. We briefly introduced ourselves and decided to keep in touch. Sue and her husband are the most wonderful and nicest people I've ever meet. I felt an instant emotional connection with them. Throughout the months, we've stayed in touch through email and phone calls. We even met up at the ASH talk, and that was the last time I saw her.

Sue passed away in her sleep this morning at her home.

Sue had a hard time with her myeloma, even though she had a transplant. During her last days, I sensed her bravery and her strength to accept what was about to come. I can honestly say, she is one of the strongest women I know. She gave me a bigger reason to walk in my school's Relay For Life and the MMRF Walk/Run this coming April. I will walk in memory of her and all those who lost their battles to myeloma, and in honor of those who are survivors of myeloma.

Please support me on Sunday, April 25th, 2010 as I help raise money for MMRF. Any donation is welcomed, it does not matter if its $1 or $100 or whatever the amount. It is all about the thought, drive, and commitment we have to finding a cure.

Here are some pictures from past relays:

Last year's Relay for Life Committee


My team at the 2008 Relay for Life.

it's been a while..

It's been a while since I last blogged. School has been super busy. I've been having midterms since the second week of school. I will be graduating in less than 4 months! I am a bit conflicted, such that I am excited but scared at the same time. There are many times where I want to stay for a fifth year just to pull my grades up and study abroad, but there is something that is pulling me back. I feel like I need to get out there and take care of my parents. I want to be able to find a job and just provide for them instead of the other way around. It will make me feel so good to be able to help them financially, even if it's a 100 bucks a month. For all they've done and given up for me, this is the least I can do. If i stay in school for another year, I won't be able to do that and I will not be able to experience the joy of supporting them. BUT to be honest, as much as i love my parents, I am not looking forward to moving home! Just thinking of that drives me crazy! Is that bad?

As for my dad, not much has happened since I last wrote, which is a very good thing! I love consistency, I don't do well with change. He had a bmb 3 weeks ago and his result is 3-4% plasma cells. YAY!! His m-spike remains constant for now. The doctor is concerned that his bone marrow maybe full of plasma cells that was preventing his blood counts from recovering but thankfully that is not the case. His myeloma seems to be ok, but his platelets are still recovering. He continues to visit his NP every week to have his blood counts checked. He continues to get regular platelet transfusions and once in awhile rbc transfusions. My dad's hemoglobin has always been low so its not that concerning to me, but his platelets were never the problem before the transplant. The doctor is planning on treating his platelets and then start him on a maintenance therapy. My dad was on Rev/Dex for 8 months before his m-spike started to rise, so I don't know if they will use Rev/Dex again for Thailomid/Dex. We will focus on boosting up his platelets for now. I will have more information about the platelets treatment soon, so i will update that later. My dad's transplant coordinator says platelets are the last to come back and for some people it may take up to a year for them to recover. I really hope his platelets will recover very soon.

I am grateful for everything that has happened. My dad remains active, he takes walks almost everyday and goes grocery shopping. He also drives him and my mom to his NP appointments. My parents are getting pretty independent in terms of going to his appointments. When i can't take my dad to his "important" appointments with his doctor, my sister takes him, and I usually regulate over the phone. My dad also stopped taking his oxycodone (pain med) completely! He used to take it around the clock, but now he's off! I hope everything continues to go well.

On April 10-11 I will participate in my school's Relay for Life. This is my 3th time doing this, and the past 2 times has been more meaningful because of my dad and all the other myeloma patients I've met along the way. Last year, I was part of the survivor's committee but it was also the same date for the Multiple Myeloma Research Foundation's walk-a-ton (MMRF walk), so I did not sign up for the committee this year. I would take this chance to ask you to support me in the 24 hour relay to symbolize cancer never sleeps. The amount doesn't matter, its really the thought that counts. Please click to donate. Also, on April 24th, I will be walking/running in the 5k MMRF walk to raise money for myeloma research. This walk means so much to me, and it would mean a lot if you support me in this walk to raise money for research and to fight against myeloma. I don't have the link yet, but I will post it later when I get my team together. The MMRF race is really important to be because I feel like this is one of the ways I can help fight myeloma. I feel bad that the two events are so close together, I don't mean to bombard everyone with donations. :)

Lastly, I want to take this chance to wish Phil Brabb the best of luck with his upcoming transplant and birth of his new baby girl. I know it is a very stressful process but I know you and your family will be able to get through it. I've been following his blog for awhile now and he is a great inspiration to myeloma patients and caregivers. He is a great example of how patients and caregivers should face myeloma. Additionally, prayers to Sue and her family. I read that Sue is not feeling well, and I hope she will feel better and stronger.

Take care and keep warm!

Eyes

This past weekend my dad went to the optometrist to have his eyes checked. His eyes have been bothering him for awhile now, but we agreed to have it checked out after recovering from aSCT. He complained of blurry vision and the halo effect when he was exposed to lights. I was really scared because I instantly thought of glaucoma.

I think it is very important to have annual eye exams (or even more frequent) especially when you're on dexamethasone. Although dex has a great affect on myeloma cells, it also increases the eye pressure, which can causes cataracts and glaucoma. Cataracts is pretty normal as we age and it can usually be successfully treated with surgery, but glaucoma can result in permanent vision lost. There are no successful ways in treating glaucoma. There are eyedrops and surgery to slow down the progression of glaucoma, but there is no way to "fix" it. Also, symptoms of glaucoma usually become apparent when it is advanced, such as tunnel vision (lost of peripheral vision). It is hard to know if you have it since only an eye doctor can check the ocular pressure.

Please add an opthomalogist or optometrist to your fighting team!

grateful

My dad received his stem cells back a week and half ago. Everything went well, except for the DMSO smell (stem cell preservative). I will never eat corn chowder again! We will wait for his cells to engraft and hope that it will help bounce back his platelets and rbcs. Couple of days ago, my parents went to the NP again. His m-protein results from a week ago remained the same. YAY! He also got some platelets and rbc.

Overall, my dad is doing well, he remains active! I love how he cooked and cared for me during my winter break. It feels extremely good to feel like a kid again. :) I love how he stole my Christmas present (a snuggie) from bf! I love how he made a big deal out of dinner whenever my bf came to visit. I love how he made the most delicious food because he feels that I am deprived of food at school. I love how he lectured me about having a irregular sleeping cycle. I love how he didn't understand that I am a college student and I do not have the luxury to sleep whenever I want. I love how he forced to eat lunch. Man, I feel like I am in high school again! I LOVE HIM! :)

And as for me, this is my second week back to school and it's already kicking my behind. I planned to attend the lymphoma and leukemia ASH recap conference, and I have company this year! Last year I went alone and it was pretty intimidating, especially since I went alone but nonetheless I had a great time.



Almost every year of college, thalidomide, is mentioned in at least one of my classes. Did you know they are studying the treatment of crohn’s disease (i think it's crohn's disease) with thalidomide? In developmental nutrition, the professor showed extensive pictures of birth deficits due to thalidomide. It seemed that thalidomide affected different disciples in different ways, but it all comes down to the 1960s newborns. In many European countries and Canada, many pregnant women used thalidomide for nausea and sleeping aid. Babies were born with shorten/disfigured limbs, so it was soon banned in the drug market.

It is pretty amazing how thalidomide changed the treatment of myeloma. Because of it, we have Revlimid and soon Actomid (pomilidomide) available. I believe things happen for a reason, we may experience set backs but in the end...everything will ok. We may not see it, but know somehow someway it will be alright. I know positive thinking maybe hard at times, especially when all you see is darkness. Who am I kidding, I am the most pessimistic person out there! In all honesty, I have gained so much from my dad's diagnosis, of course, I would prefer it not to happen, but I have to make sense of it in one way or another. It is what it is.