Thursday, December 24, 2009

catch up #2


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. 

Wednesday, December 9, 2009

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.

Sunday, December 6, 2009

My father was diagnosed with MM last April after a case of penumonia and endocarditis. Hes gone through several treatments: Rev/Dex (which worked wonders for him but only lasted 8 months), Vel/Dex (helped a bit but only lasted 3 months), D-PACE (preparation for the SCT) and a aSCT this Sept. I will include details later, as I am studying for finals right now. However I can't seem to concentrate and this is why...

A month after the SCT (10/27) to be exact, the doctor ordered tests to check his myeloma status. A week later, my parents go the new that he is in CR (only a very faint band was detected on his SPEP). Last week, I accompanied my father to his first appointment with his transplant dr who is now his regular hem/onc. He delivered GREAT news, he confirmed that my father was in CR. YAY! ALL SMILES! Not... A week later (which was this past Thursday), I received his labs via email from his nurse (labs drawn the previous week, the day of the dr's appointment). I was crushed, I was stunned, I was speechless, I was devastated. It said his Paraprotein is 0.6 g/dl. I panicked. I scanned over the labs for another 700 times. I emailed his nurse to make sure paraprotein was his m-spike (except I knew that it was). I wanted to cry. WHY!??! HOW?!??! he was just in CR a month ago!!! I emailed his dr but his dr was away at the ASH conference and won't be back till this week, but he did respond to me. He reviewed his labs and the one from 10/27 and said "he may be relapsing, but I can't do anything until I return."

This whole weekend, which I should have been studying, I cried and scared. How can this be? All that hard working and suffering, and this is all? I am counting the days until his next appointment, this Friday, but i feel like it's a decade away, not to mention the hell week. The hardest part is yet to be confronted... you see... I haven't told my parents about it yet. I want to see what they have to say on Friday before breaking the news. My dad is still recovering (it's only post-almost 3 months transplant), and is doing quiet well, but now this... I am scared.. I pray that he will continue to fight this ugly thing, I pray that he will not give up.

I know this is an abrupt post, but I needed to let out my thoughts and feelings. I feel trapped, I feel like no one understands, I feel helpless, but most of all I am scared and lost. I have always been the strong one in my family but I feel like I am so weak right now. And did i forget to mention. I just turned 21 last nov.? This is way too grown up for me, I should be out partying, but I am far from that. I have been beside my father since his diagnosis, accompanied him to all his appointments, researched extensively on EVERYTHING, and supported him through all his ups and downs. You see, the hardest part of this is, he does not speech English, I am his bridge between him and his doctors, and I wouldn't have it any other way.

My dad is a great man and the most unselfish person in the world... please let all this negativity stop...please let the sun shine.