No, I am not talking about starting a line of bizarre shoes! Today is the urine collection day - you know, the one I hate. The good news is that Kelly and Marilyn made a surprise visit last night, and I'm just getting ready to go over their house to spend the day knitting and watching some scary movies (my favorites).
Now, how many people do YOU know who would allow you to keep your pee in their refrigerator? Yeah, I thought so - not many, if any, right? Well, it's not like you can't identify it - the container is a huge, pumpkin-colored plastic thing that absolutely cannot be confused with anything else.
So after a great day with them, I'll collect my toys (and pee), go home and continue until first thing tomorrow morning. Then, it's off for the special delivery.
Just in case you're wondering WHY this collection takes place, the doctors are looking for a protein that can start spilling into your urine - which can cause kidney problems (definitely not a good thing). So far, mine has been absent of this protein - called the Bence Jones Protein. Normally the results would be ready along with my bloodwork on March 2, but I'm told there's not enough time to get the results back; so will have to wait (again) for a call back from my doctor when he gets the results. Will keep you posted!
Really not much more to say about today - I think you already know how I feel (sigh).
Feb 27, 2011
Feb 25, 2011
Blood and Snow
February 25, 2011: Woke up this morning to beautiful, white, sticking on the ground snow. I love the snow. Everything is so quiet, peaceful and beautiful. Have an appointment today for bloodwork to be followed up on March 2. Enjoyed the quiet ride to Hematology Oncology via Foothill. Such wide open spaces, horses, cows and a couple of donkeys. My kind of ride. Of course, Adam Lambert playing in the background "For Your Entertainment". As usual, the blood draw never is an easy one for me. Lucky if I walk away from there with less than three pokes. Guess my veins have gone into hiding. Finally, though, they got what they needed. Usually don't go in on Fridays for bloodwork, as I need to give a 24 hour urine sample as well. Office is not open on the weekend, so have to wait until Sunday to begin. Will transport "the goods" on Monday morning. Funny, but I HATE that part most of all - don't know why, can't explain it. But collecting urine all day long, to me, is more invasive than the needle.
Feb 23, 2011
Survey Says
February 11, 2011: Had an MRI today - actually was called a Myeloma Bone Survey. Took about 2 hours - all I can say is that I'm glad I'm not claustrophobic. Listened to some great classical music, and took myself away mentally. For some reason, whenever I have a CT Scan or MRI, I always seem to cry. Don't know if it's fear, worry, hating the process, or I'm just praying so hard to God for good news that tears flow. Still working on the whys of that one. Worst part will be the waiting. The purpose of this MRI is to determine whether or not I have any lesions on my bones. Have bloodwork and 24 hour urine testing on February 25, and will meet with my doctor again on March 2. Again, waiting.
February 17, 2011: Got word from my doctor that the MRI showed NO (yeah!!!) bone lesions. Praise the Lord - thank you, thank you. So, like I do with every result of every blood test, I made all the phone calls to the long list of friends and family who are my support system and want to "know everything". We are all breathing a sign of relief. More to come on March 2. My doctor and I did discuss briefly on January 31, a stem cell transplant - autologous (meaning my own, not someone else's) stem cells. A lot of information for one day, so we agreed to discuss more at our March 2nd meeting - after seeing what the bloodwork looks like.
In the meantime, phone calls are being made and received by nearly all my loved ones (I say nearly - well, that's a whole different chapter).
Of course, the hardest people to tell the news to was Erik (my almost 30 year old son), and my sister, Kay. Normally, I ask her to relay the information to her two daughters, Renee and Stephanie; but this time, I asked her not to say anything. I'm on FaceBook, and some of my friends were sending me good thoughts and prayers - my great nieces are on FaceBook, and I didn't want Renee and Stephanie to find anything out from their kids, so I had to make the dreaded call to them. Renee is my first-born niece and first God-daughter. Telling her tore my heart out. She just turned 40 last October, and I made a surprise visit to Arizona. Shocked the hell out of her - but that was a good shock. This one is not. Then, there's Stephanie. I swear to God, if I didn't know any better, she could be my daughter. We are alike in so many ways. I think I'd rather have 12 root canals at one setting than tell her this news. Guess that just comes from wanting to protect your loved ones, I suppose.
Most of you all know that I have an extremely bizarre sense of humor - I mean, REALLY bizarre. Some get it, some don't. Right now my husband, Tuck, is not getting it. Then again, maybe he is, as he just informed me the other day that he is in Stage I of Denial! Laughed my ass off at that one. But he didn't laugh when after I got the phone call to schedule the Myeloma Bone Survey, I said "survey says" - you know, like Richard Dawson on Family Feud? Everyone else I said that to has laughed - Tuck still hasn't. I'm working on him, though. All in the perspective - in May of this year, he will be cancer free five years! Yep, I was his caregiver when he went through his chemo and radiation for Stage IV base of the tongue cancer (like Michael Douglas). He didn't have very good odds at even surviving the treatment, let alone the first year! Interesting now how the table has turned - he will be on the "other side" of this demon now. My counselor had mentioned once that each person - the one who has cancer, and the caregiver, goes through their own personal hell. Guess we're about to find out what each other felt.
As of today (that is my mantra) there is no cure for MM - and I know that it has jumped to the top of the R&D list. I have a cousin who is a nurse, and she says "they" are THIS close to finding one. Right now, it seems as though the stem cell transplant is the procedure that can "buy time" before treatment begins. Let's pray!
February 17, 2011: Got word from my doctor that the MRI showed NO (yeah!!!) bone lesions. Praise the Lord - thank you, thank you. So, like I do with every result of every blood test, I made all the phone calls to the long list of friends and family who are my support system and want to "know everything". We are all breathing a sign of relief. More to come on March 2. My doctor and I did discuss briefly on January 31, a stem cell transplant - autologous (meaning my own, not someone else's) stem cells. A lot of information for one day, so we agreed to discuss more at our March 2nd meeting - after seeing what the bloodwork looks like.
In the meantime, phone calls are being made and received by nearly all my loved ones (I say nearly - well, that's a whole different chapter).
Of course, the hardest people to tell the news to was Erik (my almost 30 year old son), and my sister, Kay. Normally, I ask her to relay the information to her two daughters, Renee and Stephanie; but this time, I asked her not to say anything. I'm on FaceBook, and some of my friends were sending me good thoughts and prayers - my great nieces are on FaceBook, and I didn't want Renee and Stephanie to find anything out from their kids, so I had to make the dreaded call to them. Renee is my first-born niece and first God-daughter. Telling her tore my heart out. She just turned 40 last October, and I made a surprise visit to Arizona. Shocked the hell out of her - but that was a good shock. This one is not. Then, there's Stephanie. I swear to God, if I didn't know any better, she could be my daughter. We are alike in so many ways. I think I'd rather have 12 root canals at one setting than tell her this news. Guess that just comes from wanting to protect your loved ones, I suppose.
Most of you all know that I have an extremely bizarre sense of humor - I mean, REALLY bizarre. Some get it, some don't. Right now my husband, Tuck, is not getting it. Then again, maybe he is, as he just informed me the other day that he is in Stage I of Denial! Laughed my ass off at that one. But he didn't laugh when after I got the phone call to schedule the Myeloma Bone Survey, I said "survey says" - you know, like Richard Dawson on Family Feud? Everyone else I said that to has laughed - Tuck still hasn't. I'm working on him, though. All in the perspective - in May of this year, he will be cancer free five years! Yep, I was his caregiver when he went through his chemo and radiation for Stage IV base of the tongue cancer (like Michael Douglas). He didn't have very good odds at even surviving the treatment, let alone the first year! Interesting now how the table has turned - he will be on the "other side" of this demon now. My counselor had mentioned once that each person - the one who has cancer, and the caregiver, goes through their own personal hell. Guess we're about to find out what each other felt.
As of today (that is my mantra) there is no cure for MM - and I know that it has jumped to the top of the R&D list. I have a cousin who is a nurse, and she says "they" are THIS close to finding one. Right now, it seems as though the stem cell transplant is the procedure that can "buy time" before treatment begins. Let's pray!
Life Changes
January 31, 2011: Well, this was a day I sure wasn't looking forward to. I guess none of us in the "smoldering" stage of Myeloma want to hear the words "your numbers aren't going in the right direction". Egads, and for nearly 2 years to the day, I had just gotten comfortable with the "smoldering" idea - kinda hot, don't ya think? Yep, smoldering sounds much better than Stage I.
Funny (not ha/ha funny) but two years ago, Kelly was with me when I got the news that my bone marrow biopsy showed I had MM. Talk about shell shocked. She was with me January 31, 2011, too, when I got the Stage I news. Well, actually, she was in the waiting room. I've always been extremely private and choose to have visits/chats with my doctor alone.
Let's start at the beginning, though. Most people aren't even aware they have MM until symptoms begin. As for me, I was taking a medication that had the potential of causing liver problems. So, my doctor suggested blood work every six months. In March of 2003, I had blood work done, and my liver counts were elevated. After further indepth testing, I was diagnosed with MGUS (which I fondly referred to as Gus-Gus, you know, from Cinderella). The actual name is Monoclonal Gammopathy of an Unidentified Significance - whew. Bottom line - they don't know really what it is, there's just stuff there that doesn't belong - how's that for layperson's talk? Thank God for oncologists, cuz this stuff is crazy heavy!
I've done a lot of reading since 2003 about MGUS and Myeloma - most of the information states pretty much the same thing; in most cases, nothing ever happens, in other cases, it can take up to 20 YEARS before developing into active myeloma, and it usually strikes males typically of African descent, and in the age group of between 60-70. Hmmmm - let me think - female, age 53 at MGUS diagnosis and Portuguese. When I get "home" I plan on having a LONG chat with my mother LOL.
I had my first bone marrow biopsy in 2005 - what an experience THAT was. Kelly, Marilyn and Tuck were there for moral support, but were not in the room - thank goodness. I'm sure they all would have passed out at the size of the needle. Good thing I didn't see it. While the doctor is able to numb some areas, they cannot numb the marrow itself. So, all isn't too bad until they "hit bone" - not a pain that can be described, for sure. Suffice it to say, I have an extreme "potty" mouth, but the only thing that came out of my mouth that day and for all future BMB was "Oh, golly". Yes, you heard me, something Shirley Temple would say, right?
Funny (not ha/ha funny) but two years ago, Kelly was with me when I got the news that my bone marrow biopsy showed I had MM. Talk about shell shocked. She was with me January 31, 2011, too, when I got the Stage I news. Well, actually, she was in the waiting room. I've always been extremely private and choose to have visits/chats with my doctor alone.
Let's start at the beginning, though. Most people aren't even aware they have MM until symptoms begin. As for me, I was taking a medication that had the potential of causing liver problems. So, my doctor suggested blood work every six months. In March of 2003, I had blood work done, and my liver counts were elevated. After further indepth testing, I was diagnosed with MGUS (which I fondly referred to as Gus-Gus, you know, from Cinderella). The actual name is Monoclonal Gammopathy of an Unidentified Significance - whew. Bottom line - they don't know really what it is, there's just stuff there that doesn't belong - how's that for layperson's talk? Thank God for oncologists, cuz this stuff is crazy heavy!
I've done a lot of reading since 2003 about MGUS and Myeloma - most of the information states pretty much the same thing; in most cases, nothing ever happens, in other cases, it can take up to 20 YEARS before developing into active myeloma, and it usually strikes males typically of African descent, and in the age group of between 60-70. Hmmmm - let me think - female, age 53 at MGUS diagnosis and Portuguese. When I get "home" I plan on having a LONG chat with my mother LOL.
I had my first bone marrow biopsy in 2005 - what an experience THAT was. Kelly, Marilyn and Tuck were there for moral support, but were not in the room - thank goodness. I'm sure they all would have passed out at the size of the needle. Good thing I didn't see it. While the doctor is able to numb some areas, they cannot numb the marrow itself. So, all isn't too bad until they "hit bone" - not a pain that can be described, for sure. Suffice it to say, I have an extreme "potty" mouth, but the only thing that came out of my mouth that day and for all future BMB was "Oh, golly". Yes, you heard me, something Shirley Temple would say, right?
Subscribe to:
Posts (Atom)