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.
It took me a while to find your blog but I am glad I did. That's a heavy emotional burden to carry while trying to go to school. Our oldest daughter, age 22, dropped out of her teacher credentialing program when Sue was being treated for myeloma. Our other daughter, age 21, stayed in school. She's in her fourth year.
ReplyDeleteIt's important for our daughters to understand that they are not responsible for what happens to their mother. Neither are you responsible for what happens to your father. That doesn't mean you don't care.
We will join you in praying for your father. We will pray for you too.
George and Sue
I am a very close friend of George and Sue, and have been going through this journey with them. It was not by accident that you met them in S.F. the other day. We will also pray for your father, your mother, and especially you, as you go through all the appointments with your father.
ReplyDeleteCindy
I'm so glad you recognized my mom in the hospital! I can relate in being the kid...but not, it would be a heavy burden to be the only bridge of communication. I am so shocked, awed, impressed, inspired that you've been sticking with school. I took a break from grad school and now it's kind of a struggle figuring out how to get back into it, or what route I'm going to take. Sending lots of prayers. You'll do great on finals! What kinds of classes?
ReplyDeleteI can identify with your distraction. Last May when my mom was diagnosed I thought that I would just defer emotionally dealing with it until after finals week. I spent hours studying, or so I thought, but I never got anything done. I found and I think you may agree that writing really helps to organize thoughts and put them into perspective.
ReplyDeleteI am praying for you and your family. For your dad’s health and for your education. Also for your mom, I know one of the difficult things for me has been watching my dad deal with my mom’s medical problems.
My Oh My MM's Youngest Daughter
Hi,
ReplyDeleteHang in there. Know that your meeting Sue and George in person was a Divine appointment meant to strengthen both them and you. Although in your quiet moments you may be scared, tired and lonely meeting them was God's way of letting you know that you are not alone.
Peace,
Sheri Snively
This is really strange for me reading this as i recently started a blog to help me put down my thoughts on my dads diagnosis and relapse, i just came across your blog now and can understand exactly how you feel. Its painful watching someone you love go through this..but i admire your strength and i pray that you will get through this. X
ReplyDeletehttp://dadsmyeloma.blogspot.com
The same thing with CR then relapse & right back into treatment happened to me. Complete Remission at Day 100 (June 09), but some "activity" in August, then again in September, and I found myself back in chemo, a V-R-D regimen. I begged off December b/c of our move to another state, but resume again next week. YUK. I was sorta feeling normal, I don't want to go back to chemo. But I know I must.
ReplyDeleteGood luck to you, you sound very driven and grounded. What God has thrown at you is making you a 21-year-old who appreciates life and the people in your life way more than those partying kids. It will take them years to fully understand what you already know about life!
hi,
ReplyDeleteParam this side from India.
..I m basically a fashion photographer and these days working in local hospitals as medical social worker.. i hope u will not mind if some stranger wud like to share his experience.
I was in my school's final year and my GrandMother got suffered some brain disease. She used to gimme pocket money and also made special dishes for me when she was perfect.. but nw she was in ICU. I was very much attached to her and always bunked my tution classes and sports matches at the time of her visiting hours. I used to participate in our school's dramatic society and we wr rehearsaling for one play with me as one of lead character.
At final day when we hav to perform on stage, just before 30 minutes, I got a call from my uncle that come to hospital, its urgent. It was tough for me to go to my group and say that i m leaving, as everybdy was so excited about play and performance. However my heart said that u shud go to hospital. I talked to my principle and teachers and left for hospital. That was my life's 1st responsible decision. I come to know that GM has went into coma and they need somebody who can stay for 24 hours in hospital. i decided to break school for the time being and thus talked to my parents. For few weeks i lived a total responsible life and that experience has changed my power of taking decisions. My GM died after 3 months. I participated in every part of funeral. I took decision to drop that year in school. hence i learnt to decide by myself under available elements.
we are not responsible for everything happening in this universe but these things are the moments of awareness and it really helps to grow us as more independent and take-charge persons.
You are really a daring and proactive girl and we hope u will make things allright.
Our best wishes are with u, always.
paraM.
Hi there. I just came accross your blog and read your story. I am thinking about writting a blog for my own father, age 56. Im 25 years old, and am going through the same situation you are. My dad was diagnosed last january 2009. Him and my mom lived in Brazil at the time for my fathers job, me, my brother and sister live in Virginia. its been a battle, a painful bumpy road since. I feel your pain, fromthe heart as I was just hugging my father two nights ago as he was layig in his bed begging for mercy ad crying of pain. Makes you question yourself, why? why is this happening to us? It was very hardto accept his condition, but i have found strength andlove from family, friends, and especially from God. I will start a blogg soon and talk about the year and half journey so far... he is still waiting to be able to have a transplant...
ReplyDeleteStay strong and positive and know that this too shall pass...
Stephanie Couldrey