Wow, time flies. Realized that I haven't posted anything since June - where has the time gone? By now you all know that the "Fowler Collection" day is one of the most dreaded - told my husband last night I'd rather have a Bone Marrow Biopsy - crazy, huh? Can't explain it, it just is.
I returned from my Arizona trip; having had a wonderful time visiting with my family, and knowing that my sister is recovering very well from her heart attack which occurred when I was on my cruise. Yes, God is good!
Has been a busy couple of months, however. Have had a few visitors - my life-long friend, Tude and her daughter Kelly visited for awhile, not long enough. Tude left, and Kelly stayed (love that young lady). She ended up taking the train home, something she has been wanting to do. I love the train, the sound is soothing to me, the gentle rocking lulls me to sleep. After Tude and Kelly left, my nephew, Justin and niece, Alyssa came for a visit - their first to Oregon. Oh, my God - what a ride that was, a wonderful ride. Must admit I was worried that a 13 year old boy and a 16 year old girl wouldn't want to spend an entire week with their 60 year old Auntie, and younger, but not that much younger Uncle; but they did - and even they said the time went by so fast. That's a good sign, I think, don't you? I was scared they would want to leave after the first day!
We laughed, we talked, we painted, we talked, we went fishing, we talked, we went on a most amazing jet boat ride on the Rogue River and to dinner, Western style, we talked. Get the picture here? We talked until my voice was hoarse. My goodness, up until 3, 4, 5 o'clock in the morning for a week. I'm lucky to be alive after that, but I'd do it again in a heartbeat! Very sad to see them go home, but Tuck and I purchased a 26 foot trailer, and we are taking a little jaunt leaving on September 13 to go to Arizona for my niece, Stephanie's 40th birthday. Sorry, Steph - now everyone knows how old you are. But we'll get to see everyone again, can't wait. Will be going there for Christmas this year, stopping to pick up our son, Erik in California along the way. This will be the first time in over 8 years that we all will be together for Christmas. Ah, yes, FAMILY.
My cousin, Vanessa from Los Angeles is arriving this Saturday, and will be staying until September 10. I'm so looking forward to her visit; haven't seen her in a couple of years. Good thing I've been taking my Melatonin to get some good rest because I know we, too, will be up until the wee hours of the morning talking, talking and talking some more.
On a sadder note, our best friends, K&M moved to San Diego, so their monthly visits to Oregon won't be happening. Miss them terribly already, more than words can say, actually. Talking on the phone, or emailing doesn't quite cut it, but it was a necessary move. They are selling their home in San Jose - have purchased a gorgeous home in San Diego which they will move into this month. For my birthday, they gave me two trips to visit them - no other gift could have been better. Miss my knitting/horror movie partner!!
So, I never did tell you the results of my last blood work/24 hour urine testing. Numbers were even lower than the last time. My doctor doesn't quite know what to make of it - all I know is that I'm so grateful, I thank the Lord every day I'm given. I see this as extra time, because just a few short months ago, my numbers were looking as though I would be in treatment within the next six months. Whew.
I was recently told that I have changed since finding out my cancer was advancing. I'm really not sure how to respond to that - I know I am the same core person I've always been, the same thoughts, the same feelings, the same values....what has changed, I think, is my insistence on surrounding myself with positive people, keeping negativity at bay, and keeping my stress levels down as much as possible. (That, by the way, hasn't been going so well.) Stress, I believe, is a killer of a lot of things. But as for ME, I'm still the same me, only I have cancer now. And as most of my friends and family know, my motto is and has been for a very long time, "It is what it is, til it isn't". There you have it. I'm me.......with cancer.
I read something the other day that had a tremendous impact on me, you know, the ones that sort of make you suck in your breath, but you don't really know why? It goes like this:
"You can only hurt so much before you're numb, bend so much before you break, forgive so much before you hate, ignore so much before you walk away." I don't know who wrote it, but it must have been someone in quite a bit of pain. I know that pain. Perhaps that's why it struck me so deeply. It may be because I've been so close to becoming that, or that I'm working on moving past it. I choose the latter, I have to....I don't like the alternative.
So, that's how I am today....plus drinking lots of fluids....will deliver the goods tomorrow! Will let you know the results next week.
In the meantime, God Bless.
Sep 1, 2011
Jun 9, 2011
Wishin' & Hopin' & Thinkin' & Prayin'
Been a long while since I shared any information - so here goes. Had bloodwork done again yesterday - the usual feelings just like all the other times, only I am quite exhausted. Hope this doesn't affect anything other than my snippy mood (ha ha).
Have been on a most wonderful yet exhausting journey - won't go into all the details here, as this isn't the forum for that. Spent 16 days on a cruise, leaving Ft. Lauderdale to Bermuda (could live there in a heartbeat); Ireland; Falmouth (was sick, didn't get off the ship); La Havre, France; Dover; Rotterdam; Norway, ending in Copenhagen (loved it there, too). Then on a plane to London, drove to Bristol, back to London for a night, then off to Chicago where I stayed with my friend, Laurie, and had the pleasure of meeting her family whom I've heard of for years. Was wonderful to finally meet them - her sister, Patty, is everything and more than what she shared with me. Spent five days there, then back home to my honey, dogs, and Sydney, my bird, who will be 26 years old in August. Two days home, then off to Arizona for my niece, Alexis' graduation (See, Alexis, you are now in my blog for real, not just referred to!)
Actually was quite fearful that Sydney wouldn't be alive when I returned, as he and Tuck don't have the best of relationships. To be truthful, no one has a good relationship with Sydney but me, Cockatiels are known for that. So, I politely (ok, it wasn't very polite) reminded Tuck that Sydney is the longest male relationship I've had, and if he died of NATURAL causes while I was gone, Tuck would become the longest male relationship I will have (God willing). HOWEVER, if Sydney died because his water didn't get changed, or food replaced, then Sydney would remain the longest male relationship I will have had. I think Tuck understood completely.
Many things happened during my journey, but the ones I'm "wishin' & hopin'" make a difference in my health are: visiting Copenhagen which is known as the healing city (keep your fingers crossed); driving to Bath to see the Roman Baths. Awesome to say the least, and Kelly, "Mom" Pat and I drank from the fountain that filters the water (known for healing). Oh, my God, it tasted like shit (sorry), was warm - and we were lucky they only gave us half a glass, as I'm sure no one would be able to drink a whole one. But I chugged it down, again, "wishin' & hopin'". Off to Westminster Abbey - wasn't aware that the average Joe Blow citizen was able to attend a service there. Got to hear the choir sing, but most amazing of all was the sermon that was given; it was on Extreme Unction - now know as the annointing of the ill. Could not believe that there I was sitting in a most beautiful church, far, far away from home, hearing a sermon to which I could totally relate. Wow, was that meant to be or what?
So, I get my results on June 15, and I am full of hope that my numbers will be the same as they were the last time, if not better.
Oh, when I say "the last time" I think I missed telling you about my last lab results where my numbers were down from the time before. There were a lot of happy tears that day!. Thank the Lord for that one - the longer I can stay away from treatment, the better.
Will definitely let you know what the results are next week - in a funny sort of way, I'm actually looking forward to it; will just keep believing that something good has to come of all my experiences this past month, I know God is listening.
Have been on a most wonderful yet exhausting journey - won't go into all the details here, as this isn't the forum for that. Spent 16 days on a cruise, leaving Ft. Lauderdale to Bermuda (could live there in a heartbeat); Ireland; Falmouth (was sick, didn't get off the ship); La Havre, France; Dover; Rotterdam; Norway, ending in Copenhagen (loved it there, too). Then on a plane to London, drove to Bristol, back to London for a night, then off to Chicago where I stayed with my friend, Laurie, and had the pleasure of meeting her family whom I've heard of for years. Was wonderful to finally meet them - her sister, Patty, is everything and more than what she shared with me. Spent five days there, then back home to my honey, dogs, and Sydney, my bird, who will be 26 years old in August. Two days home, then off to Arizona for my niece, Alexis' graduation (See, Alexis, you are now in my blog for real, not just referred to!)
Actually was quite fearful that Sydney wouldn't be alive when I returned, as he and Tuck don't have the best of relationships. To be truthful, no one has a good relationship with Sydney but me, Cockatiels are known for that. So, I politely (ok, it wasn't very polite) reminded Tuck that Sydney is the longest male relationship I've had, and if he died of NATURAL causes while I was gone, Tuck would become the longest male relationship I will have (God willing). HOWEVER, if Sydney died because his water didn't get changed, or food replaced, then Sydney would remain the longest male relationship I will have had. I think Tuck understood completely.
Many things happened during my journey, but the ones I'm "wishin' & hopin'" make a difference in my health are: visiting Copenhagen which is known as the healing city (keep your fingers crossed); driving to Bath to see the Roman Baths. Awesome to say the least, and Kelly, "Mom" Pat and I drank from the fountain that filters the water (known for healing). Oh, my God, it tasted like shit (sorry), was warm - and we were lucky they only gave us half a glass, as I'm sure no one would be able to drink a whole one. But I chugged it down, again, "wishin' & hopin'". Off to Westminster Abbey - wasn't aware that the average Joe Blow citizen was able to attend a service there. Got to hear the choir sing, but most amazing of all was the sermon that was given; it was on Extreme Unction - now know as the annointing of the ill. Could not believe that there I was sitting in a most beautiful church, far, far away from home, hearing a sermon to which I could totally relate. Wow, was that meant to be or what?
So, I get my results on June 15, and I am full of hope that my numbers will be the same as they were the last time, if not better.
Oh, when I say "the last time" I think I missed telling you about my last lab results where my numbers were down from the time before. There were a lot of happy tears that day!. Thank the Lord for that one - the longer I can stay away from treatment, the better.
Will definitely let you know what the results are next week - in a funny sort of way, I'm actually looking forward to it; will just keep believing that something good has to come of all my experiences this past month, I know God is listening.
Apr 10, 2011
Poked Again
No, not THAT kind of poke - get your minds out of the gutter! Bloodwork and my favorite....24 hour urine test....were done Wednesay, April 6. I get the results on Wednesday, April 13. Will, of course, let you know the results. Must say I am a little "freaked" about getting results now. Guess I got a little complacent over the past year with having such stable numbers. We all get that way, even in relationships. Watch out for that everyone...because when there is a change, it can shock the hell out of you. Don't take anything for granted.
The only good thing about having those tests was that my dear friend from Chicago was here visiting me. Laurie Rogers, yes, Laurie Rogers - haven't seen her in 9 years. My God, I am so tired. She arrived Friday, April 1 and that first night we stayed up until 3am. Didn't sleep in very long (either of us) continued talking the next day, ALL DAY, and went to bed at 5am. Won't bore you with the gory details, but by the end of the week, we both looked like shit, bags under our eyes, me - I damn near have lost my voice from talking - but I'd do it again in a heartbeat! What a fantastic time.
Poor Tuck, though. He can't fathom how two women who can spend hours on the phone could possibly have anything to say in person. Laurie and I just looked at each other and laughed. The only reason we went to bed was because of sheer exhaustion...we could have talked 24/7. Before she got here, we were talking on the phone for about an hour, when Tuck called from an Indian Casino which is about an hour and a half away from here, to let me know he was on his way home. When he got home, Laurie and I were still talking. He laughed and said "You're STILL on the phone with Laurie? What the hell will you talk about when she gets here?" Poor guy - spent most of the time in his man cave watching golf and playing on his computer, because is was non-stop chatting. Now he knows first hand the indepth conversations that women can carry on.
She left Saturday morning - and I didn't get out of bed until 10:30. On top of that, took a two-hour nap in the afternoon.
Laughter is the best medicine, especially when shared with loved ones! I treasure you all, you know.
The only good thing about having those tests was that my dear friend from Chicago was here visiting me. Laurie Rogers, yes, Laurie Rogers - haven't seen her in 9 years. My God, I am so tired. She arrived Friday, April 1 and that first night we stayed up until 3am. Didn't sleep in very long (either of us) continued talking the next day, ALL DAY, and went to bed at 5am. Won't bore you with the gory details, but by the end of the week, we both looked like shit, bags under our eyes, me - I damn near have lost my voice from talking - but I'd do it again in a heartbeat! What a fantastic time.
Poor Tuck, though. He can't fathom how two women who can spend hours on the phone could possibly have anything to say in person. Laurie and I just looked at each other and laughed. The only reason we went to bed was because of sheer exhaustion...we could have talked 24/7. Before she got here, we were talking on the phone for about an hour, when Tuck called from an Indian Casino which is about an hour and a half away from here, to let me know he was on his way home. When he got home, Laurie and I were still talking. He laughed and said "You're STILL on the phone with Laurie? What the hell will you talk about when she gets here?" Poor guy - spent most of the time in his man cave watching golf and playing on his computer, because is was non-stop chatting. Now he knows first hand the indepth conversations that women can carry on.
She left Saturday morning - and I didn't get out of bed until 10:30. On top of that, took a two-hour nap in the afternoon.
Laughter is the best medicine, especially when shared with loved ones! I treasure you all, you know.
Stem Cell Transplant Consultation
OK, here we go. Pretty heavy meeting on March 31. Quite a bit of information, all of it necessary to know in order to make an informed decision when the time comes. You may remember that my oncologist referred me to this doctor to get a second opinion as to whether treatment is necessary now, or continue "watchful waiting" or if a stem cell transplant should be done now. Glad to report (glad? Overjoyed is more like it) that Dr. Maziarz from the Oregon Health Science University is in agreement with Dr. Hehn, my oncologist, it's not necessary at this time. More good news is that I am young and healthy (don't laugh, in the Cancer world as far as stem cell transplants are concerned, 60 is young (75 is "old"), and even though I have MM, I am not displaying kidney function problems, and I have no bone lesions. That makes me a good candidate for the transplant.
The ugly news is that the treatment for MM prior to stem cell transplantation is between 9 and 12 months. Wow, go figure .... me, I get the cancer where treatment is a year; others, 6 weeks (LOL) In no way am I diminishing the hell cancer patients go through with the six week treatment - lived it with Tuck; was just kinda hoping that if I had to get cancer, one that gets "cured" in six weeks would have been nice.
Dr. Maziarz has done over 2,500 transplants and he's only 58 years old. He shared that he has been doing this for 30 years - if you're going to put your life in the hands of doctors, mine are the ones to go with, for sure. Am I scared? You bet I am - but like I said in a little note on FaceBook, they're gonna have to take me kicking and screaming!
The doctor shared with me two types of Staging methods - one I can't pronounce (should just look it up online, but I'm not gonna bore you with those details) and the other is the new and improved International method of staging. The new and improved version sucks....I'm at Stage II with that one, but Stage I on the older version. Guess which one I pick?? Ha Ha, no brainer. Dr. Maziarz also told me that he treats the individual, not numbers -- he has a patient who is at Stage III and is still NOT in treatment. He did have a bone lesion in his shoulder, which was radiated, is now gone. However, this man is not displaying any other symptoms, either.
The concern for me is that I am having symptoms, and my numbers are "creeping up". Time will tell, I suppose - it's the waiting that kills me, just like everyone else waiting for anything, I'm sure.
So, bottom line - Dr. Maziarz is now part of my cancer "team" and when Dr. Hehn does bloodwork, bone marrow biopsies, whatever; he will be relaying all the results to Dr. Maziarz, and the two of them will decide what's next for me and when. I am in good hands.
The ugly news is that the treatment for MM prior to stem cell transplantation is between 9 and 12 months. Wow, go figure .... me, I get the cancer where treatment is a year; others, 6 weeks (LOL) In no way am I diminishing the hell cancer patients go through with the six week treatment - lived it with Tuck; was just kinda hoping that if I had to get cancer, one that gets "cured" in six weeks would have been nice.
Dr. Maziarz has done over 2,500 transplants and he's only 58 years old. He shared that he has been doing this for 30 years - if you're going to put your life in the hands of doctors, mine are the ones to go with, for sure. Am I scared? You bet I am - but like I said in a little note on FaceBook, they're gonna have to take me kicking and screaming!
The doctor shared with me two types of Staging methods - one I can't pronounce (should just look it up online, but I'm not gonna bore you with those details) and the other is the new and improved International method of staging. The new and improved version sucks....I'm at Stage II with that one, but Stage I on the older version. Guess which one I pick?? Ha Ha, no brainer. Dr. Maziarz also told me that he treats the individual, not numbers -- he has a patient who is at Stage III and is still NOT in treatment. He did have a bone lesion in his shoulder, which was radiated, is now gone. However, this man is not displaying any other symptoms, either.
The concern for me is that I am having symptoms, and my numbers are "creeping up". Time will tell, I suppose - it's the waiting that kills me, just like everyone else waiting for anything, I'm sure.
So, bottom line - Dr. Maziarz is now part of my cancer "team" and when Dr. Hehn does bloodwork, bone marrow biopsies, whatever; he will be relaying all the results to Dr. Maziarz, and the two of them will decide what's next for me and when. I am in good hands.
Mar 26, 2011
Beauty and the Beast
Most of you know that my favorite music is classical. Always has been, from the time I was little. One of my favorites is Beethoven's Moonlight Sonata. I had a friend in high school who was a fantastic pianist. We had choir together, and during our lunch hour, he taught me how to play all but the last 2 bars of this piece. All by sight, because I can't read a note of music. But I felt wonderful sitting at Mom's piano playing this masterpiece - sounded great - just like I knew what I was doing....until you realized that the music stopped before it was over - then I sat there looking quite idiotic not being able to finish.
OK, that's the beauty part - here comes the beast. I got a call from OHSU (Oregon Health Science University) which is where I will be staying for a month for the stem cell transplant. The registration person called me so that I can "get in their system". When she put me on "hold", as happens to everyone all the time, right -- you don't have to guess what music was playing -- I think you already know. Yep, Moonlight Sonata. So here I am, listening to one of the most beautiful pieces of music ever written, waiting to be put into a system of a place that is going to bring me near death before getting somewhat better. Is that what irony is? In any case, I'm all registered. Whoopeee!
The doctor from Portland (OHSU) will be in Medford on March 31st and I have an appointment with him that day. I've not been given the time yet, but expect to hear something the first part of the week. Must say that I'm in a surreal kind of place...going through the motions...but feeling like it's happening to someone else, not me, right?? NOT ME.
Will let you know what the doctor suggests, whether doing a transplant would be something he thinks we should do now, or undergo the treatment beforehand. If it was up to me, I think I'd go for the transplant now; there's something about being poisoned with three different drugs for 6-9 months that just doesn't sound very appealing.
Sorry this isn't as funny or "chipper" as some of my other blog entries, but I promised myself that if I was going to blog, I was gonna blog the truth the whole truth and nothing but the truth, so help me God. Oh, wait, I'm not on trial........am I?
OK, that's the beauty part - here comes the beast. I got a call from OHSU (Oregon Health Science University) which is where I will be staying for a month for the stem cell transplant. The registration person called me so that I can "get in their system". When she put me on "hold", as happens to everyone all the time, right -- you don't have to guess what music was playing -- I think you already know. Yep, Moonlight Sonata. So here I am, listening to one of the most beautiful pieces of music ever written, waiting to be put into a system of a place that is going to bring me near death before getting somewhat better. Is that what irony is? In any case, I'm all registered. Whoopeee!
The doctor from Portland (OHSU) will be in Medford on March 31st and I have an appointment with him that day. I've not been given the time yet, but expect to hear something the first part of the week. Must say that I'm in a surreal kind of place...going through the motions...but feeling like it's happening to someone else, not me, right?? NOT ME.
Will let you know what the doctor suggests, whether doing a transplant would be something he thinks we should do now, or undergo the treatment beforehand. If it was up to me, I think I'd go for the transplant now; there's something about being poisoned with three different drugs for 6-9 months that just doesn't sound very appealing.
Sorry this isn't as funny or "chipper" as some of my other blog entries, but I promised myself that if I was going to blog, I was gonna blog the truth the whole truth and nothing but the truth, so help me God. Oh, wait, I'm not on trial........am I?
TMI
No, not too much information...Terrible Myeloma Information. My God, what a nightmare. I've been reading other people's blogs who have MM and are already in treatment. Some have had a stem cell transplant and have already relapsed. This sucks. The treatment for MM consists of Chemo, Thalidomide and steroids - just read quite a bit of information (the best site I've seen so far) at http://www.netdoctor.co.uk/ but wow, the stuff is overwhelming to say the least.
We're talking six to nine MONTHS of treatment, not the usual six weeks of chemo and radiation. Geez, I don't even know what to say about that - my stomach is churning, flipping over like on a roller coaster ride, only not fun!
Well, we Americans laugh at British humor and how "tell-it-like-it-is" they seem to be. This website is no different. Check it out if you want -- it will sure give you an idea of what's in store for me.
Obvious I'm having a shitty day today, huh? Oh, well - tomorrow may be better.
We're talking six to nine MONTHS of treatment, not the usual six weeks of chemo and radiation. Geez, I don't even know what to say about that - my stomach is churning, flipping over like on a roller coaster ride, only not fun!
Well, we Americans laugh at British humor and how "tell-it-like-it-is" they seem to be. This website is no different. Check it out if you want -- it will sure give you an idea of what's in store for me.
Obvious I'm having a shitty day today, huh? Oh, well - tomorrow may be better.
Mar 12, 2011
Things You Cannot Recover
A friend sent me an email the other day that had these five things that cannot be recovered in life.
1. The Stone.....after it's thrown
2. The Word.....after it's been said
3. The Occasion.....after it's missed
4. The Time.....after it's gone, and
5. The Person.....after they die
Here's how the above touched me - how about you?
1. Let he who is without sin cast the first stone.
2. Choose your words wisely. Remember that even
if you apologize for your hurtful words, the effects
can last a lifetime.
3. Don't save stuff for a "special occasion" ... TODAY
is that special occasion!
4. No one promised you a tomorrow. Live life to the fullest
each day and be the best you can be - it's your choice.
5. Tell your friends and family that you love them, waiting
until it's too late wil leave you with regrets that will damage
your soul and spirit.
1. The Stone.....after it's thrown
2. The Word.....after it's been said
3. The Occasion.....after it's missed
4. The Time.....after it's gone, and
5. The Person.....after they die
Here's how the above touched me - how about you?
1. Let he who is without sin cast the first stone.
2. Choose your words wisely. Remember that even
if you apologize for your hurtful words, the effects
can last a lifetime.
3. Don't save stuff for a "special occasion" ... TODAY
is that special occasion!
4. No one promised you a tomorrow. Live life to the fullest
each day and be the best you can be - it's your choice.
5. Tell your friends and family that you love them, waiting
until it's too late wil leave you with regrets that will damage
your soul and spirit.
Mar 7, 2011
What Cancer Cannot Do
I'm not sure who wrote this poem, so I can't give any credit to him or her. When Tuck was going through his chemo and radiation, I gave him a necklace which had this inscribed on it. He wears it every day.
WHAT CANCER CANNOT DO
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the spirit.
These are beautiful words, great ones to try to live by; some days are easier than others. When I read these words, I think of God, who is all good -- then there is this cancer, which is evil. Some days the evil tries to take hold to invade my soul and quench my spirit. Today, the evil did not win!
WHAT CANCER CANNOT DO
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the spirit.
These are beautiful words, great ones to try to live by; some days are easier than others. When I read these words, I think of God, who is all good -- then there is this cancer, which is evil. Some days the evil tries to take hold to invade my soul and quench my spirit. Today, the evil did not win!
Mar 2, 2011
Hurry Up and WAIT
OK - got the results of my bloodwork today. Boy, this is tiring, and I haven't even started anything yet. Numbers are up, not a lot, but up nonetheless. While I love my oncologist, I hate the things he tells me (LOL). He believes if this trend continues - I go back for more testing in six weeks (oh joy, oh bliss), that I probably will be receiving treatment within six months.
The good news is that this gives me time to LOSE more weight because, of course, the type of treatment needed for Multiple Myeloma consists of chemo, thalidomide (you know the drug that caused birth defects and was taken off the market in the 50's), and steroids. Thank God I'm not planning on getting pregnant anytime soon.
The bad news is that the steroids will cause weight GAIN - weight GAIN????? What the fuck...everyone else I know who has ever had cancer, gets skinny with treatment; me, NO - I'll end up looking like a severely inflated balloon, with my face looking like Jerry Lewis' did at the Telethon several years ago when he was unrecognizable! Geez! Shouldn't surprise me, right? Oh well, you can laugh, or you can cry - guess I'll do a little of both. Vanity, thy name IS WOMAN!
Hey, just thought of something - Tuck better be on his best behavior, cuz look out for a woman on steroids - could cause some serious damage - ha ha!
My Doctor tells me that when stem cell transplantation becomes part of the equation, it will take place in Portland over a period of a month or so. The doctor who will be doing the procedure comes down to Medford once a month, usually towards the end of the month, and he is scheduling an appointment for me with him to discuss timing. He just might want to do the procedure before attempting any treatment first - gonna leave that in their capable hands.
Scary either way you look at it. I was told that when they "take you down" with mega doses of chemo for the stem cell transplantation, if they don't give your stem cells back to you, you can kiss your ass goodbye. Guess I better be really nice to the folks who give your stems cells back, huh?
OK, now you know as much as I do. And I promise to keep you posted.
The good news is that this gives me time to LOSE more weight because, of course, the type of treatment needed for Multiple Myeloma consists of chemo, thalidomide (you know the drug that caused birth defects and was taken off the market in the 50's), and steroids. Thank God I'm not planning on getting pregnant anytime soon.
The bad news is that the steroids will cause weight GAIN - weight GAIN????? What the fuck...everyone else I know who has ever had cancer, gets skinny with treatment; me, NO - I'll end up looking like a severely inflated balloon, with my face looking like Jerry Lewis' did at the Telethon several years ago when he was unrecognizable! Geez! Shouldn't surprise me, right? Oh well, you can laugh, or you can cry - guess I'll do a little of both. Vanity, thy name IS WOMAN!
Hey, just thought of something - Tuck better be on his best behavior, cuz look out for a woman on steroids - could cause some serious damage - ha ha!
My Doctor tells me that when stem cell transplantation becomes part of the equation, it will take place in Portland over a period of a month or so. The doctor who will be doing the procedure comes down to Medford once a month, usually towards the end of the month, and he is scheduling an appointment for me with him to discuss timing. He just might want to do the procedure before attempting any treatment first - gonna leave that in their capable hands.
Scary either way you look at it. I was told that when they "take you down" with mega doses of chemo for the stem cell transplantation, if they don't give your stem cells back to you, you can kiss your ass goodbye. Guess I better be really nice to the folks who give your stems cells back, huh?
OK, now you know as much as I do. And I promise to keep you posted.
Feb 27, 2011
The Fowler Collection
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).
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 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?
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