Thank you for all of your awesome comments, emails and facebook birthday greetings yesterday! Late last night I wrote this before heading to bed:
So many great friends! The bond between fellow myeloma survivors, their families and caregivers can be amazing! When my head hits the pillow 10 minutes from now, I will rest easy knowing so many are sending me their positive energy. I never really bought-into all of that, but I’m telling you–thanks to your kind notes–I feel as good as I can remember. Thank you all for that!
Notes continue to flood my in-boxes. I’m speechless–and that doesn’t happen very often!
But enough about me! Today I wanted to share another Patient Snapshot, this time through the eyes of a loving daughter. I first heard from Stephanie last Thanksgiving. She was upset about how difficult things had become for her father, Mark.
Stephanie wrote me a long, heartfelt email, filled with details about Mark’s condition, along with her and her family’s hopes and fears. I asked Stephanie’s permission to share her father’s story with my readers, but at the time she wasn’t sure he would agree.
We have exchanged a number of emails since then. And 12 days ago Stephanie emailed me again:
Guess what!?! I finally talked to my dad about his story from my perspective that I originally had emailed you and let him read it… He said that if you would like to share his story you are more than welcome…
Wonderful! Stephanie forwarded me some family photos and we’re ready to launch. I would like to start by sharing edited excerpts from the first part of the long introductory email Stephanie sent me in November:
I feel like I know you personally, because I have been following your blog ever since my dad, age 50, was diagnosed with Multiple Myeloma in July this year. I also just finished reading your book, Living with Multiple Myeloma, and plan on reading much more. So I thought I should introduce myself and share my story. You are probably getting an overwhelming amount of e-mails right now, but I, too, would like to let you know that you are in my thoughts and prayers… I love hearing your stories and your thoughts and research and log-in everyday to see your blog.
I think I am finally out of the foggy haze that I was in when my dad was first diagnosed and I’m able to talk about it more. It just hit us all like a freight train, with such surprise and shock. So you may be part of my first personal support group! I apologize for the length of my email, but thought if I was going to share my story, it was either all or nothing. So make sure you have some time before you continue on!!
My dad had been in pain for about 10 months, not knowing what was wrong. He was diagnosed with a few different things beforefinally finding out it was cancer. Around January of this year, they thought he had shingles without the rash, then they said it was gout because his uric acid was super-high, and then they sent him to a rheumatoid arthritis specialist. Throughout this process, his pain was popping up randomly. One day his shoulder would be hurting, then it would be his ribs and finally his hip had him limping because the pain was so intense. I know he tried to keep the pain hidden as much as he could, but he is a very active person, mowing lawns for numerous people, always helping someone with a side-job here and there. So as they were getting closer to his diagnosis, the pain was becoming very apparent. He had to admit to himself and others that he wasn’t able to lift something, or that he couldn’t use certain tools, etc.
Let me say though, while he was going through all of this, his mother-in-law, Alice, age 75, was dying of liver cancer. She was diagnosed in September 2011 and my dad and step-mom had been caring for her and helping her as much as possible while she went through Chemo and radiation. What really gets me is the times I remember my dad saying to me, “I don’t know how she is doing this. I wouldn’t ever be able to go through something like that. She is a very tough person.”Obviously no one knows what they can handle until they are tested first-hand. I know just by being the observer, I have become a stronger person and know that when/if I ever have to face something big for myself, I would be able to get through it just by thinking how strong the other people in my life are, as well as thinking about people like you.
My grandma had originally fought cancer 10 or 15 years prior and was in remission, but this time around it was in her liver, lungs, and spreading, called small cell cancer. She put up a good fight, but eventually she passed away on July 2, 2012. What else really gets me was such a good-hearted, generous person. She was probably one of the nicest people I knew; I had never heard her say anything bad my entire life. It just really bothers me when bad things happen to good people like that. I know, stating the obvious… Cancer doesn’t discriminate!
You know the saying “everything happens for a reason?” Well if I didn’t believe that before, I definitely did now. Although I think it is awful that my grandma died of cancer, I really think it helped prepare my dad and step-mom for what was about to happen–and have someone on the other side looking after him.
Three weeks after she died on July 26, my step-mom answered the phone, but they wouldn’t give her any information because they wanted to speak to my dad, who was out mowing the grass and playing soccer with his four year old grandson, just forcing himself through the pain. When the person on the other line heard that, I think he probably fell out of his chair. He said my dad needed to get in the house and in a wheelchair immediately! My dad and step-mom were not expecting that, so when he didn’t think they were going to take him seriously he said “I hate to be the one to tell you this, but it looks like you have cancer.” My dad was told he was not to be walking and that he needed to get to the ER first thing in the morning. So what does my dad do? He says lets go out for ice cream! He calls me and invites me to come. So I met up with them at Dairy Queen and had a nice little snack, clueless as to what was going on. I knew he was limping, but that was it.
The following day, Dad went to the ER and spends the entire day getting scans and tests done. I got a phone call from my step-mom that evening. She told me that they are in the ER, but didn’t give me any specifics. The only thing going through my head was I knew my dad had some scans done a couple of days ago, and I remembered him telling me that he would get his results in two weeks unless it was something serious, then they would call him in immediately. So I felt a little sick and didn’t know what to say or do. I then heard from my grandparents and they asked if I had heard about my dad and said they were going over to the hospital. I told them I would pick them up and take them over. I had just gotten to my friend’s house and I apologized to her for cancelling so suddenly and cried, telling her how scared I was; trying to re-gain my strength to face whatever may be to come.
When I got to my dad’s room they were still insisting that they didn’t have results and that nothing has been confirmed. As I sat on the bed with my dad, I looked over and noticed a sign that says “Oncology.” Oncology??? Isn’t that cancer?? What am I doing on the cancer floor??? Surely this is a mistake! Surely, there has been some misunderstanding. But I couldn’t look them in the eye and ask them about it, because everyone was still grieving over their loss three weeks ago. My dad told me that there was something wrong with his hip and how he wasn’t able to walk on it. I told him maybe it was just something that could be removed and fixed with surgery and then he would be all better. At that point, I thought maybe it could just be a tumor that could be removed and forgotten about. Then I started playing the last year in my head and all the pain my dad had been in, and started thinking ‘What if it’s bone cancer…”
I was touched by the account of Mark’s diagnosis through the eyes of his young daughter. That was a pretty rough month for this family from Ohio, don’t you think? I will follow-up with more pictures and an update about Mark’s condition in the next few days.
Feel good and keep smiling! Pat