Happy Father's Day!!

Wow, it has been very very long since I last posted. I tend to start posts but never complete them, so I have several incomplete blogs that are just sitting there.

Where do I start? I graduated from college last June! My dad was so close to missing it. A week or two before my graduation, he got pneumonia and spent almost a week in the hospital. I was extremely devastated! College was definitely not a walk in the park for me, in fact, it was the hardest experience of my life. Our family has been through so much, I just desperately wanted my parents to watch me walk across the stage. I wanted them to be proud of me and witness one of my life accomplishments. Thankfully, he was discharged a few days before and got the clear to attend. Soon after graduation, I moved home and started a new job. It's almost been 10 months since I first started! I work in Breast Oncology as a clinical research coordinator and I enjoy every minute of it. I feel so blessed to have this amazing opportunity. I seriously have the BEST colleagues anyone can hope for. They are very understanding of my situation and allow me to take time off to attend my dad's appts whenever I need.

Now about my amazing and inspirational father! I had to look back on where I left off... so here it goes. Right after transplant he continued to receive platelet transfusion weekly for a month or two, and finally reached 30 before they gave him the OK to stop. When he hit 50, everyone was so excited and that is when he got his vaccinations. Itt took about 8 months! The nurses nicknamed him the platelet man! As of last month, his platelets hit 100!! It took 20 months post transplant and open heart surgery to hit 100. Besides platelets, his hemoglobin is over 12, the best it's ever been since diagnosis.

My first post ever was about the possibility of relapsing from transplant only 3 months later. To be honest, one of the reasons why I am reluctant to update is that I was afraid that I would jinx his results. For some reason, I feel incline to write about it because I know reading other people's stories helped me immensely. In short, his m-spike remained stable ranging from 0.2 to 0.4 and now 0.6. In fact, we just got back from his appointment with his hem/onc, and for the last two months his m spike was 0.6. I was extremely nervous because last month's m-spike was 0.6 and it's the highest since transplant. My dad's myeloma labs do fluctuate, so I am still hoping and praying it will fluctuate downwards. His doctor did not seem worried, he is actually pretty pleased with my dad's progress and told me not to be so nervous next time (easier said than done). He said there are 3 types of patients after transplant, people who achieved complete remission, people who had great response and the disease becomes slow growing, and people who do not respond to transplant at all. He said my dad is the second type, in which, his disease is stable and slow growing. We all know that he will need to be treated someday, but he said it can be in 3 months, 6 months, or even years. I asked about my dad's treatment options in the event that he does need treatment, and he said there are many options and even newer drugs (pom and carf) on their way to FDA approval. I think that is the most important to myeloma patients, having treatment options and responding to them. He also added that if he hits 3 years treatment free, he would feel comfortable with doing another auto SCT. Even though I am not thrilled and scared that his m-spike is 0.6, we came out feeling ok. I pray that my dad's m-spike will stay the same or, even better, DECREASE. I hope he hits at least 3 years treatment free, so his doctor feels comfortable with another transplant.

Did you notice I said open heart surgery? Yes, my dad underwent a mitral valve repair 11 weeks ago!!! I don't know if I mentioned in the previous posts but my dad had a pretty severe case of mitral regurgitation. My family and his medicine team decided that the best time to undergo this surgery is now since his myeloma is fairly stable and in general good health. At the time of surgery, his platelets were only 75. Keep in mind that any big surgical intervention requires platelets of at least 100, but his surgeon felt comfortable with the surgery. Before surgery, we were not sure whether he was getting a repair or replacement. In some cases, it is difficult to know whether a repair or replacement is appropriate. Again, we are extremely blessed to have amazing doctors. Blood products were reserved and ready if he needed it, and of course, he did. He was in the hospital for a total of 5 days, 24 hours in the cardiac ICU and the rest in a regular cardiac floor. PRETTY AMAZING HUH? His cardiologist said his recovery was one the smoothest and fastest case he has seen.

I am grateful for everyday with my dad and family. I am grateful that my dad is able to live a "normal" life for so long and continue to do so. I am grateful for WONDERFUL DOCTORS.

Lastly, HAPPY BIRTHDAYS DAY, DADDY! AND to all the fathers out there.

P.S. I apologize for a lengthy post!

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.

catch up #2

HAPPY HOLIDAYS!



Update on finals, needless to say, I did horrible. I worked so hard for the past year to pick up my grades but this quarter just destroyed all my hard work and hours of studying. I was really disappointed. I know my future will not depend on 3 digits, but really it does. Graduate school is going to judge me base on my numbers and with not so hot numbers will get me into nowhere. There are so many different aspects to consider and I just feel overwhelm sometimes.

After the first post, I thought of abandoning this whole blogging business. I was a bit hesitant to publish the post because I didn't think it would matter. However, I read all the comments that were left on my first post, it reassured me that starting this blog was not a mistake. A specific blogger really influenced my decision. I caught up with his blog today and it really touched me, Thank you. I agree that our meeting was not a mistake.



Finally updates on my dad, since the last posts we had two appointments already. The first appointment was the long anticipated one, it was the appt following news about the relapse. The m-spike remained 0.6 (same as the one I received lab reports from, they were taken a week apart). We will do another SPEP next Tuesday. During that appt, the dr and NP discussed a number of things. The NP was the one who told my dad about the m-spike and I think my dad took it pretty well. He also went over what the plan is next, and the dr came in after to talk to us. The Dr. said my dad will not benefit from another transplant in the future since it didn't help much this time. He also suggested that my dad should enter a clinical trial, Rev, Carfizamib, and Dex.

This appointment was one of the most touching and memorable for me. I never showed any fear and weakness at any dr appt with my dad, but for once I did. I told the dr. that I was scared. He told me he can't fight this alone and he needs my dad and I to fight with him. He reassured me that he will take good care of my dad and things will be ok. He saw it in my eyes that I was about to cry, he quickly told me to go out of the room and to give him a hug so I will not cry in front of my dad (we didn't go out of the room, he hugged me right there but thankfully I didn't cry). He also told me that I can't show my fear and never to cry in front of my dad (yes, this was all happening in front of my dad but he can't understand us. Sometimes being oblivious can be a good thing). From that moment on, I knew we were in good hands.


The second appt, which was last Friday, our nurse NP was sick so we had another dr who we met when we had our transplant. He was a nice man but not as personable and encouraging as my dad’s regular doc. He told us that my dad is not yet eligible for the clinical trial because his m-protein and platelets were too low for the study. Hence, next Tuesday my dad will get a stem cell boost, he will get the rest of his stem cells reinfused since a second transplant will not be beneficial. Also, my dad's stem cell collection was really little. He collected about 3.94 million altogether, which is only enough for one, but he was given half of it back during the transplant so we have the other half stored. My dad's regular dr and the dr we were seeing that day agreed to give him the rest of the cells back to build his bone marrow for the trial (to get his platelets up). My dad also got the regular flu and H1N1 flu shots. On our way out, I saw a lady that I meet at one of the support group meetings. They were waiting for our dr. who was on hospital duty (we also have the same dr). We have been in contact with each other for the past couple of months and we've built quite a friendship, despite the age difference. Her dad also had an aSCT this year, only a month before my dad. We supported each other through emails. We introduced our fathers to each other and they talked, it was really cute. Her father was the first mm patient my dad met who he can communicate with. 


catch up

I apologize for the abruptness of the last post. I was really stressed out and scared, but I am a lot calmer now. I thought maybe I this might be a good time to catch up on my dad's experience.

As mentioned, my dad was diagnosed last April. He was at stage 3. He never liked the doctors so prior to his bout with pneumonia, he never went to the doctors. We suspect that he had MM for a while. His hospitalization with pneumonia was last Feb and from there everything was a blur. Many tests were done and next thing we know, he was diagnosed with MM. Two months later, he was admitted for endocarditis, and while he was in the hospital he had his first BMB. His bmb showed 80% plasma content. After his month stay, his o/h started him on 10mg of Revlimid and low dose Dex (started low due to prior infections) and the Rev increased to 25mg over the next months. Rev/dex worked very well, brought him to almost a complete remission. His o/h started talking about a aSTC but he was responding so well to the Rev/dex we pushed it back.


A little introduction:
When my dad was diagnosed he was 57. He has always been healthy and active. We immigrated here in 1992, we have a typical immigrant story, except for MM. My parents worked their way up from having very little to making something out of themselves. It was really hard for them to adjust to a whole different life and country, and now they have to adjust to the diagnosis. My dad has amazing doctors and nurses, we are so thankful for all they have done.

So a little about me, I am currently finishing up my last year of undergrad, majoring in Neurobiology, Phyisiology, and Behavior, with a minor in Nutrition. I can't wait to graduate and move back home to spend time with my family, though I also really like living on my own. It is hard to fully enjoy being on my own when my heart is at home with my family, especially my dad's. My dad's diagnosis has influenced me a lot in many ways. After I graduate, my dad's transplant doctor offered me a research position in MM. I have always wanted to start a blog that documented my father's experience with MM, but I was a bit hesitant. I don't share much of what I go through with my friends because I don't think they would understand and I definitely don't want them to feel bad for my family and me. Sometimes I feel like I can't share my thoughts and feelings and it just builds in me. I thought maybe this would be a good chance for me to express how I feel and my perspective on my dad's myeloma experience. I guess I exploded in my last post because everything was getting so heavy.