Happy Easter .....

Just a short note to wish you all a
HAPPY EASTER
We had a great dinner at Mom's and Kevin and Ashley joined us.
At our prayer......
I gave thanks for having food on the table, family surrounding us and gave thanks that we are where we are meant to be and asked to be blessed with strength and courage for us all.

Still Pluggin' Along :)

Today's Friday and I feel even better than I did yesterday, so all systems are a "go"! Feeling as bad as I did, is again a HUGE reminder that we need to be thankful for our health and our good days. I do thank The Universe every day for being allowed to live to fight the good fight, but when you get as sick as I was, it brings it all back into even MORE perspective and focus. Being human, we do tend to "take things for granted", so we need little nudges or reminders that we all do have an expiration date, so again, be thankful to the Universe for all that we have and all that we are. Have a GREAT Easter holiday with family and friends, and know that you all are in my prayers. I really couldn't do this without you :)

WHEW>>>> I'm Back!

Well howdy howdy howdy! I've got good news and OK news ..... Sorry I have been gone so long, but I honestly did NOTHING for almost a week. Actually, couldn't do ANYTHING for almost a week. Once upon a time....in a far-away land (fever world), I started to run a temp of 103 and it fluctuated between that and 99. for a week no matter how much ibuprofen I took. Long story short, it turns out I had a massive Urinary Tract Infection...the 2nd one in a month (but the first one was nothing like this one)...and it truly kicked my ass. I was so weak from both the fevers and the infection that I had to rest walking from my bedroom to the kitchen! Everything was a struggle. I cannot believe that a UTI could knock you so down and out. Also being on my 1st week of chemo lowered my resistance too so they must have gotten together to create the "perfect storm" in my body. On friday, Mom drove me to see Dr. Nair and he did the blood and urine tests and then sent me to the infusion room to hang a bag of IV antibiotics to jump start this thing and get the show on the road. I thought it would start working pretty quickly being IV but I didn't feel near human until a few days ago....Tues....and that was only operating at about 70% at best. Walking to get the paper in the morning was a BIG DEAL. I really am in awe of how awful a UTI can make you feel. At my friday visit, Dr. Nair told me to hold off on the chemo and not take it until I saw him today. So today, my regular monthly visit, he re-tested the urine and I STILL have a UTI so he switched my antibiotic but I do re-start my chemo tonite. The urine has improved from what it was, but there is still bacteria in there. What stubborn little f*cks they must be! Bloodwork a little low in a few areas, but that's due to the infection, so I go back for bloodwork in 2 weeks and in the meantime I start on a sulfa based antibiotic tonite and hope it knocks it right out this time.
I have what I think is GREAT NEWS regarding my Multiple Myeloma though! On my visit to the oncologist that March 3 when he gave me the news of the return of my MM, it kinda threw me for a loop that day because I had been coming back with ZERO MM cells ever since my transplant. Some of that visit is a blur after telling me it was back and I remember him saying that he had received my bloodwork back and that he was sorry to tell me that we were "going down the relapse road", so he was going to start me back on my prior chemo regime to get a handle on it. Usually I ask alot of questions, but that day I was just so blown away I couldn't form a question! So in between that day and the day I went back for my UTI IV meds, I had time to formulate questions to ask him and one of my questions was to explain what the numbers REALLY mean. There is a normal range, just like any bloodwork has, so I wanted an explanation of what my numbers meant and what it really means as far as what was goin on inside my body. He explained that to be in a full blown relapse, the numbers must be 25% OVER the highest end of the normal range. I am only 5% OVER the normal range, so he does not consider me in a full blown relapse right now. My numbers mean that, yes, the MM has returned HOWEVER we caught it so early and the numbers are so low, that he is NOT worried about me and thinks that this round of chemo just might do the trick. So the plan is to stay on this about 9 mos to a year, and then a bone marrow biopsy to see where we really are and if there has been any damage. So needless to say I am thrilled with this news of my numbers being so low and not considered unmanageable! YAY! Not too thrilled about going back on the chemo, but hey, if that's all I have to do, I'll manage all the little crappy side effects. I'm just hoping the fatigue doesn't hit me as hard as last time, but then again, if it does, I can manage that too and I have to stay on top of the weight thing, so next grocery shopping list will include lots of ice cream, whipped cream and fudge sauce and any other fattening thing I can think of! That's it for now.....good to be back :)

Chemo Day 5.....

Actually I've only taken it 4 days, as I take it before bed, so that's just 4 doses so far. I was on this same med, same dosage, for 14 months prior to my BMT with relatively few side effects. Lots of fatigue......really thirsty.....appetite change which made me lose weight and taste buds changed but I could handle all of that. I woke up this morning really thirsty and downed 1/2 a bottled water right away. Just guzzled it. My morning coffee tasted weird.....my starbucks frappacino which I love, tasted watered down and I put it back. I also woke up with 3 blisters on my lower lip with a 4th one starting . I put blistex on it to keep it moist with plans to call Dr. Nair tomorrow. Reason I didn't call him today is I was on the computer all day as my laptops been acting weird (real slow) and that's before this worm thing! And I didn't know it was gonna take all dang day to fix it! Problem is Revlamid DOES NOT cause blisters but neutropenia does (which you get from chemo when the chemo makes you blood cell count too low. And now....on top of that....I felt a little weird about 15 minutes ago, so I took my temp and it was 103! No adult should run a fever that high. So I took 600 mg of Ibuprofen (can't take aspirin as I am already on coumadin and I don't want to bleed out.) I feel myself being weird right now (feverish) so wanted to get this entry in before I go to sleep or something bad happens. I'll call doc tomorrow so I just hope I get thru the nite ok and it's not my kidneys or something else. Not calling Mom or my sis, because what would they be able to do and it would just make them worry. And if I call Dr. answering servide, he'll tell me to go straight to the hospital, which I'll probably end up doing tomorrow anyway, if I don't stop the fever. I'd rather sleep in my bed tonite. I'll take my temp again in about an hour to see if the ibuprofen kicked in, but somethin is causing the temp, so sort of infection I presume or it may just be the low white blood cells. Will find out one way or another tomorrow. SHIT SHIT SHIT>>>>>>I am sooooooo sick of this shit. Only 4 days and all these symptoms already? Love you guys....and good nite.

4th Dose of Chemo Tonite......

It's been 3 nites that I have taken the Revlamid an Coumadin and this Friday will be when I add the Dex. So far, in 3 days I have noticed a slight change in my taste buds, a slight numbness in my lips and the thought of food kinda skeeves me out! How I could tell about the taste buds as that I am addicted to Starbucks Vanilla Frappacino, the kind you can buy at the grocery store. You can also but it at Starbucks, but I usually just pick it up when doing my regular grocery shopping. I opened one up today and took about 3 sips and thought " they must have messed up this batch as it tastes watered down. So I opened another and WAA LAAAAAAAAAAA......watered down too. I remember the first time around I stopped buying Starbucks because they tasted gross and switched to just water (saved me money! LOL) as water seemed to be the only thing that quenched my thirst and believe me I drank gallons!! At lease lost of water helps with flushing out kidneys etc. so I really didn't miss the Frappacino. Yesterday I noticed a slight tingly felling in upper and lower lips, so we'll see where that leads us. And lastly, I had planned to make a pasta dish tonite for dinner, but when I got the ingredients out it was just gross. No other way to describe it. So I put those back and thought...."what can I eat that's bland, plain and simple. So I toasted a bagel and put some peanut butter on it, and here it sits, but I promise I'll gag it down if I have to, as I'm up to 106 lbs. and I'll be damned (if I can help it) to get back to a lowly 93 lbs. So all of this happening on just 3 days of chemo has me concerned, but I'll see where it takes me. Meanwhile....Let's Eat and Cheers.......

Chemo Arrived Today.....

Well, what do ya know? All the hoops I jumped through a few days ago, paid off, as UPS delivered my chemo (Revlamid) around noon today. I must confess I had a bit of an anxiety attack again after the Rev was delivered....didn't last for too long, but felt my heart starting to race and a little shortness of breath. I also had to run to the pharmacy here, as my doctor called in 2 prescriptions I have to take with the chemo.....I needed to pick up my coumadin (blood thinner) and dexamethasone (a steriod that gives the chemo a little extra boost), so I could start the whole regime over again tonight. This merry-go-round sucks. The horses on it are ugly. I don't like it.

Feeling Better.....

Part of the problem yesterday, is I was dead ass tired, and didn't even realize it. Either I was tired first, which made me feel the way I did, OR feeling those emotions made me tired. Which is it.... Chicken or egg? All I know is, I got settled into bed to watch some TV before going to sleep, and the next thing I know, I wake up and the TV's going and the show I was watching was something I had taped (I have a Tivo type of recorder) and I have no recollection of what it was about at all! Usually I'll watch a few hours of TV before turning off the lights and calling it a day, but last night? I have no idea! After watching a recorded show, I'll delete it, but this morning the show was still there, so I must have almost passed out the minute my my head touched the pillow. Feel rested today and none of the ugly feelings are there......maybe a titch of anxiety and frustration around the "getting the chemo crap" straightened out, but other than that, all's well. Thank you all for EVERYTHING.

Today I am.....

Today I am:
1. Sad
2. Stressed
3. Frustrated
4. Anxious

All 4 of these emotions I cannot afford.

Long Day.....

Full of hassle day.....trompin through the maze of paperwork to get my meds.....can't get started on chemo till we jump through all the hoops they make you jump through. Was on the phone for over 4 hours today talkin to this person and that person. You have to be your own advocate and make all these calls yourself and then re- call these people to make sure they follow through (do the job they get paid to do). Not A GOOD DAY....had a headache when I got through with the calls.

Tomorrows.....

When we say "tomorrow" I don't think we know what a powerful word it is. Tomorrow, of course, means the day after today and we usually use it in the context of "I will be doing (fill in the blank) tomorrow" or "we are going to (fill in the blank) tomorrow". We always assume that there really will be a tomorrow, don't we? But how do your know? How do you really know that tomorrow will ever come? Of course, up to this point, tomorrow has always come, so we take it for granted, and rightfully so as "tomorrow" hasn't not come through for us yet! One of the greatest old show tunes of all time is from the stage play ANNIE, which it titled "Tomorrow" (it's only a day away)......got ya singin didn't I? hee hee I'm sure it was written because tomorrow hold soooooooo much promise!! Tomorrow we can do the things we didn't get to do today. Tomorrow gives us an automatic "do-over" if you need to make amends or correct a wrong. Tomorrow holds the key to turning life around. Tomorrow can make us feel anxious (ie job interview tomorrow).....Tomorrow can make us
feel happy (meeting with the "girls" for coffee or a drink).......I don't think there is another word that can take the place of or be substituted for the word tomorrow.....at least not one I can think of in my vocabulary. And for me, tomorrow may be the day they find something to really help in finding a cure for Multiple Myeloma. So my fervent wish would be to have the ability to string a whole bunch of "tomorrows" together and live long enough by stringing all those "tomorrows" together so I will have time. I just need time. My faith is strong, my attitude and outlook positive....all the things I can control I will, all in the most graceful encouraging and hopeful way I can.....I just need a bunch of tomorrows, because I cannot control the passage of time.....I just need a bunch of tomorrows.

The Inevitable.....

I knew from the "get go" that the nature of Multiple Myeloma is to relapse. They told me this on day #1, and with the great promise of having a Bone Marrow Transplant, the odds of returning were at least farther away then having no BMT done at all. HA..... I say to that! I've always been one to beat the odds in many situations, but in this particular thing I wanted to beat the odds ON THE OTHER END>>> ie, having to GO LONGER before relapse, not sooner than the 1-3 years it was "supposed" to give me. So now all I'm left with right now, is an active cancer and I must find my way along this long and tortouous road to make peace and embrace the Cancer Monster. When you're little you hide under the covers when you "see" a monster, but what do you do when you see a monster when you are an adult? And it REALLY IS a monster? Well, I suppose I could hide under the covers. Tempting. But in reality I'll at least have to come out and pee and get something to drink, so then EEEEEEEEEEEEEEEEK......there's the monster again. SO the only thing left to do is face the monster and make peace with the monster as it will literally be with me the rest of my life. So what I'm currently working on is shaking hands with the monster although clearly making sure he/she understands I am still a mighty foe to deal with, but also let it know that it doesn't scare me. No hiding under the covers for me. Battles and going to war, which is really what I'm doing just reminds me of how strong I must be to fight. You don't really comprehend how very strong you are until you have to prove it. Now, I'm not gonna lie.....the feeling of being vulnerable is beyond words, but then so is my determination and stubborness to beat this. I have too many things to do yet, to allow this monster to scare me and force me under the covers. Besides, I can't stand the dog hair on the covers! LOL

Bone Survey Results.....

Mom and I went to pick up my Bone Survey Results and then spend a little time shopping for a few things at Bealls. (I thought of you Patty :) I needed a few little things like a little rug at the doorway between my garage and laundry room, the kind that won't skid on you as it will go on top of tile, to cut down on the crap that gets tracked into the house on your shoes. My house is mainly tile, and I swear, I just don't know how the tile gets so dirty and full of leaves, etc since it's only me and the dogs living here. I'm gonna blame it on the dogs! LOL I read the Bone Survey results and what I can see, it's good news in that there are more no active lesions/tumors forming. Of course the results were compared to a prior Bone Scan and there were mentions here and there of worsening when compared to prior scans, with more degenerative changes noted and a worsening of the compression fracture in the lumbar area from the tumor that was created from my first bout of cancer, BUT to quote..."the rest of the bones show no evidence of abnormal lytic lesions (tumors) to suggest the metastasis of myeloma". So YAY.......at least I will not have to receive radiation and can go straight (do not pass go....hee hee) to just getting on with the chemotherapy, and see where this takes us. Still waiting to receive the call from my Chronic Disease Fund's Pharmacy to see when I can expect the chemo to get here and start making a schedule for taking it. It's 3 weeks on and 1 week off I remember, but due to chemo brain, I'll need a remedial course in the taking of the coumadin and dex as I can't remember if I still took those on my week off or not. Oh well, please keep the prayers coming and I'll keep you up to date when I know what's up and I will be writing lots more as there's tons of stuff swirling around in this brain of mine......

Here We Go Again.....

Today I went to have my bone survey done, which is basically a set of x-rays of my entire body so they can see if there are any places in which the Multiple Myeloma Cells have decided to gather and have a "tumor growing Party". Just being there brought back a flood of memories, and I'm thinkin to myself....."shit.....here we go again". The same routines, repeat themselves like an old black and white movie that flutters. I feel like wearing one of those sandwich board signs that says "I HAVE CANCER SO I KNOW THE DRILL"! LOL
The same things happen.....being escorted down a hall by an X-ray Tech telling me to remove my clothes and jewelry, how to put the gown on (that's always a helpful reminder though as there are so many friggin strings and openings, if you don't get it right your Bum or Hoo-Ha will be flashing down the hall. LOL Here's the key for your locker to put your personal items in and be sure to lock it and bring the key with you and when we're done, please remove the gown and place it in the laundry basket when you have your clothes back on. During the body scan it's "Don't Move"....."Hold your Breathe"...."Now Breathe". All of the awkward body positions you have to get into to get the correct angle. The coldness and sterile look of the room. The back breaking hard table you have to lay on and when your bones stick out at your hips, due to no body fat, well, it's not too comfortable. Good thing though is it doesn't last long, as it's over pretty quick but they did have to repeat the upper body head & cervical as I had forgotten to remove my teeny upper ear piercing so I guess I messed up the x-rays from the metal. I forgot the little earring in there so OOOOOOOOOOPS....sorry bout that! My Mom came over a bit after I got home with her adorable new little puppy Abby, so we visited for awhile and then I finished the shredding of old bank papers and other info that is part of my spring fling cleaning process. It's funny that a few of my friends have emailed me and said OMG why are you still cleaning and doing all that hard work after just getting such crappy news? I would love to sound like Martha Stewart and say that's just what you do during spring cleaning, and yes.....that's part of it, but I think the bigger part is the compulsion to not leave a big fat mess that family will have to sort through when I get sick or die. I'd rather leave a clean house with everything in order, with important papers all together and labeled for "easy reading". Guess that's it for now......I will be going to the X-ray facility tomorrow to pick up the results and see what they have to say. My usual MO is to pick up any kind of results and read them myself, so I know what's going on NOW. I get quite impatient about waiting for lab or test results, and again, being an "informed consumer" gives me some time to digest what the results are so when I go to see Dr. Nair (which won't be for about 2 weeks), I'll know what if any questions I need answered. I am supposed to hear from the Pharmacy that dispenses my chemotherapy sometime this week to set up a delivery day, so these results are important to know right away as you can't be on chemo and have radiation at the same time, so IF there are any tumors growing they would want to ZAP them first and then begin chemo. So, fingers crossed there are no Tumor Parties going on so I can go straight to the chemo. Sheesh....never thought those words would come out of my mouth.......ready to get started on Chemotherapy!!! See how the world of Cancer is so topsy turvy, convoluted and crazy?

Wow....Don't know how to tell you this....

Yesterday was my 10 month Bone Marrow Transplant Anniversary. As you read in my last post I was feeling quite nervous about the "pee test" I had done and had an appt with Dr. Nair last Thursday, March 12th, to go over the results of my urine test. The reason you have a urine test is that MM cells get secreted into the urine so it is a "first line" tell, if your cancer has returned. If any MM cells are found in the urine, they then take blood for a very intensive scrutinized blood test to see what and how many cancer cells have returned. Up to this point, as I have reported to you, all systems were a go, thumbs up, atta girl etc etc etc. I even skipped a months visit at the oncologist office because my urine was coming back with ZERO MM cells. I had this deep down, gut feeling that something was wrong. I could feel it in my bones (no pun intended :) I even experienced my first ever anxiety attack the sunday before I had my doctor's appt as I just felt that something I was wrong. I felt like I couldn't breathe, my pulse was sky high, heart beating out of my chest. It was no fun at all and quite scary, as I've never had an anxiety attack before. I just felt it. I knew. Well, Dr. Nair so sadly reported that yes, once again my cancer has returned. I am so sorry ya'll. I am so angry, and hurt and frustrated. I put myself and my family through the whole BMT process and for what? 9 months basically. 9 months of cancer free life. That's it. It was "supposed" to give me about 3-5 years hopefully. At least a couple of years. There are no guarantees with this horrible ugly blood cancer, as I have found out first hand. I have alot more processing and thinking to do about how this situation is effecting my life and of course my family's. I am again, so sorry. I just ask once again, for your prayers and support. I know I'm beginning to be a real pain in the ass, so I appreciate your patience with asking, but without hope and prayers, I don't know where I would be. I don't have much more to say right now, except that I am going back on my old chemotherapy regime of Revlamid, coumadin (the chemo causes blood clots) and dexamethasone (a steriod that helps the chemo work more effectively), and really just go from there. At this point we do not know how bad (or good?) the situation is until we receive the results of the blood work taken and shipped off to the lab. The results will tell us exactly how many cancer cells have returned and how aggressive it is being. I also am scheduled for an entire body bone scan as the last bout of cancer gave me 2 tumors, one in my pelvis and one on my spine that fractured 2 vertebrae, so we need to see if there are any more "hot spots" trying to grow a tumor. I can't let my mind go pretty much past this point right now. I can literally only take ONE MINUTE at a time and handle that time period as best I can. I will post more and keep you informed and once again, prayers please...with a vengeance. Love to you all

Spring Cleaning.....Outside and Inside

I'm starting to go on my "Spring Cleaning Spree".....in more ways than one. I wanted to start on my bedroom and I mean REALLY go through it all. Closet, desk, dressers, bathroom......ALL OF IT. By the way, why is it always the bigger the room, the more crap winds up in there. My bedroom is huge......about 20 ft x 20 ft., so there's lots of places " to stick stuff". Basically I'm an organized person too, so I'm really a paradox, because it's really an organized mess. For instance, rather than filing away, say my prescription receipts into a file folder or something, I have them in a pile on my desk. That pile is also next to the pile of insurance papers, which is next the the pile of.....well, you get the picture! This spring cleaning is also just not related to the physical. I'm going through an internal spring cleaning as well, and actually, I prefer the physical spring cleaning! I know I have probably addressed this before, but I've had anxiety about my upcoming PEE TEST that I just dropped off at the lab. I go to see my oncologist this next Thursday and for some reason, I'm having anxiety about the upcoming results. It's like I've said before.....the further away I get from my transplant, the reality is, I become closer to relapse. I think my feeling this way may be for a few reasons, as I've tried to process where these feelings are coming from and why (the therapist in me! LOL). Firstly, since I've been home from the transplant (CAN YOU BELIEVE IT WILL BE 10 MONTHS ON MARCH 15th?), I've seen Dr. Nair every month and gotten the good to go, thumbs up on a monthly basis. This time I've "graduated" and only see him every other month, so now it will be 2 months since I've kept tabs on my body, and that may be a source of some anxiety, having had more time not knowing if I'm doing ok. Another source of anxiety is that I am taking antibiotics for a urinary tract infection, which I haven't had since.......well, if you go back to my very first entry, you'll remember that that was one of the tell tell signs I had MM.....UTI's that kept recurring. I didn't go to the doctor for it though, as Dr. Nair had written me a prescription for Levaquin for just this reason, so as soon I was sure I had the telltale signs, I started on them. But that has me a little concerned since I haven't had one in over 2 years. All of this (physical) spring cleaning though, got me to thinking that I also have alot of loose ends to tie up (everyone should do this anyway.....even if you don't have cancer).....like I need to make a will or whatever that other thing is called (thank you CHEMO BRAIN), I need to arrange for others to be able to access my back accounts, make a list of all credit cards and /or pin #s, internet passwords, etc. and not meaning to sound depressed or morbid, but another thing I want to get arranged and paid for is my cremation. When people die, there's enough grieving going on that the last thing you want to do, is make arrangements, as I know that first hand from my dad dying. He made it so much easier for me and Kate because he too had made prior arrangements and all we had to do was make a phone call and everything was taken care of. I thank him for that, and feel that I too, need to do that as well. Please don't think I'm depressed or anything....far from it actually.....I'm just being a good Girl Scout and "being prepared"...or is that the Boy Scout thing? So, I'll start tomorrow with a good cup of coffee and read the paper and then......spring cleaning again.....inside and outside. :)

Wanted to Share This....

I found this tucked away in one of my books (yes, I'm actually starting to do a little bit of spring cleaning......the operative word being little) :) and after reading it again, I thought I would share it with you. I guess this is why I saved it!

When the "storms" of life
gather darkly ahead
I think of these wonderful words
that I once read

And I say to myself
as threatening clouds hover
"Don't fold your wings and run for cover"

But like the eagle
spread wide your wings
and soar far above
the troubles life brings

For the eagle knows
that the higher he flies
the more tranquil and brighter
become the skies

And there is nothing in life
we were ever asked to bear
that we can't soar above
on the wings of a prayer

And in looking back over
the storm you passed through
You'll find you gained strength
and new courage too.

For in facing life's storms
with an eagle's wings
You can fly far above
Earth's small petty things.

I'm REALLY Full of HATE right now....

I really don't use the word "hate". Never really have used it as a regular word in my vocabulary. I'm not saying I have never ever used the word hate, as in "I hate mashed potatoes" (yes....I know....I'm weird) or "I hate watermelon"......(yes.....again...I know I'm weird), so when I think about it, I don't really use the word "hate" very much at all and the only time I can recall using it, is in regards to food items! The last few days though, I have used the word HATE in regards to cancer.....and not even my cancer! I'll scream it right now though....for ALL to hear......I HATE CANCER. In the last week, it has come to my attention, that 2 very close and dear people are dying from cancer, and I am just so angry that yes, it elicited the word HATE from me......numerous times actually. I mean deep down. Firstly, my dear long time and wonderful friend, who will remain nameless here, due to privacy issues, as I haven't asked for her permission to talk about this using her name, has found out that her Mom who has beat this CANCER Monster twice already in her lifetime, has again been diagnosed with a return to various parts of her body and it just doesn't sound good. She (the Mom) is a very religious person and has handled her past bouts of cancer with grace, confidence and courage......which, as I personally know, is a challenge in and of itself. Secondly, a male friend I know, oh gosh, we go back 35 years, has been diagnosed with not only lung cancer, but liver, brain and a multitude of other organ cancers. Kevin, my ex, called to tell me the news and after we got off the phone, I cried for about 2 hours straight. Really cried. I love this guy....we go back so far and have so many wonderful times and memories together....too many to even remember! The news of these 2 folks battling this horrible disease, just made me so angry and brought the word HATE into my brain. My heart aches for their present and future suffering. My heart aches for their families who are so powerless over this disease. My hear aches because these are good people and yet are consumed with this bad disease. I just had to write and get this out as I cannot stand to keep this HATE inside of me. We, as a people, need to reach out to each and every person who we love and treasure and make sure they know that we do. That's the only weapon I know that can battle cancer. Being together. Showing Love and Support. Talking and Sharing. As a present Cancer survivor myself, I ask that you do these things. Reach out and Hug who is important in your life. Tell them you love them. That's the only internal weapon we have.

Happy Anniversary to Me......

On February 15 it will be my 9 month post Bone Marrow Transplant Anniversary! YAY! I can't believe it has been 9 months already. I am feeling so wonderful, it's hard to believe I was feeling so crappy and literally near death, just 9 short months ago. I'm not gonna lie....it was a hard rocky road I traveled, being on chemo for 14 months prior to the transplant and then the transplant itself, but the rewards I am reaping now makes the journey so well worth it. All of the suffering, the pain and other unmentionable side effects were killers, but all in all, I came through it oh so well, and except for some fatigue here and there and of course the back pain I live with, I am doing so great right now. I am just the most fortunate woman in the whole world and enjoying every new day I have been given. Not a day goes by that I don't give thanks for my family who was taking each and every step with me and never left my side. I pray for all MM patients that they can and will be as fortunate as I have been, in their battle with MM. I am curently "mentoring" a gentleman I met, as he too is a patient of Dr. Nair's (there are only 3 MM patients in his whole practice.....that's how rare this cancer is) and this fellow is also going to Moffitt next month for all his tests and then the scheduling of his BMT, pending results of all testing. Mom and I met with him and his wife for lunch a while ago when he was first diagnosed and kinda walked them through the process of what it will be like, but now that he has his dates all lined up, we'll be meeting again before he goes to give them all the "ins and outs" of life as a BMT patient at Moffitt. I am so glad he is going there as I know who his caretakers and doctors will be so I rest assured that he is in wonderful hands. I feel grateful that I can be of some help to someone going through this as "Multiple Myeloma World" is a scary place to live and it's nice to have a friend along the way. The only thing that sneaks into my consciousness every once in a while is knowing that this wonderful remission will not last forever. You cannot beat Myeloma. It's the devil in disguise. However......I did join a telephone conference sponsored by the LLMS (Leukemia, Lymphoma and Multiple Myeloma Society) last week and heard an MM doctor talk about new and upcoming treatments for MM and when the conference was over I was almost elated (geez....I don't think I've ever used that word before!) at the information he discussed. There are new drugs since I was even diagnosed (2 yrs ago) and many more on the horizon to deal with any relpases that may occur so it made me much less afraid of what the future may hold. I really don't plan on relapsing anyway (wink wink) but I filed the info away so when the time comes I can discuss my options and know what I am talking about. Always be an informed consumer!! So take that MM (punch punch)......you don't know who you messin wif! LOL

Waxing Philosophical, I guess......

The other day I was going thru one of my many "cancer" notebooks that I've kept since I started this journey and came across something I had written in one of my more philosophical moments. This is what I wrote verbatim: " How many times in your life can you look back and see that when things that looked like disasters at the time, turned out to be incredible gifts and became pivotal turning points in your life? We ALL have experienced this so we KNOW this. So I think the "trick" for living a clear life with calmness within and without, is to talk to ourselves and remember to remind ourselves AS THE PERCEIVED DISASTER IS ACTUALLY HAPPENING, that here is another "gift in the making" coming our way."
Easier said then done I know, but......
Nuff said.

Yep...Still Here...and I'm One Grateful Gal.....

These last four weeks have really been a blur for me. Lots of personal "issues" going down around here, but the negatives are slowly but surely turning into positives. I really don't keep secrets from you as I have always been open and honest about what I write, but the "issues" I am talking about are not mine, so as not to intrude on the privacy of others, I will not talk about them here. I only mention them to you now, as an explanation and so you would understand where my focus has been lately, but all seems to be coming back to what I call my "new normal". About time!! I had a Dr. Nair appt a few weeks ago and having had done the joyful "pee pee" thing the week prior to the appt. I was anxious to see him and go over the results as well as having my bloodwork done at the office, to see what was up with everything in my body these days. GOOD NEWS FRIENDS!! The pee pee contained not even one ugly little MM cell. NONE. NADA. ZILCH. ZERO. I am so proud of my body I just can't stand it!! It has done such a terrific job engrafting all of those little baby stem cells they put back into me. They all did their job and went to their assigned stations and started to work as soon as they arrived! How much better can that be? Dr. Nair and I spoke for quite awhile, and he told me that I am his BEST result ever in Multiple Myeloma treatment. He said that it is quite common to be in "remission" but test results will detect trace amounts of MM cells, and I have none. In cancer talk there are various categories of remission......the top 2 being called Complete Remission which means no cells to be found and the next category down is called Partial Remission...which means they can't find any active MM cells, but they do detect some MM cells. I am just so very fortunate that I have taken so well to the treatment of first the Revlamid and Dex to prepare for the BMT, and then the BMT itself. I know in my heart that I could not have done this alone.....my medical team, the hospital team, my family, my friends, and to all of you and people who I have never even met, praying for me and my recovery. It's really unfathomable and overwhelming when I think about it. I am truly the most fortunate and grateful person alive. Instead of fighting for the right to live my life, I've been given the chance to actually live it once again. How awe inspiring! It makes me cry when I think about it really. To literally face death and being given the opportunity to be able to walk away from it makes me really re-assess who I am, what I should do, where I'm going, and so many many more things. I meditate every day and also pray for guidance and strength. It's all still so much a work in progress.....the way I feel about my remission and what I will do to make the world a better place. When I first got home from my BMT I was seeing Dr. Nair once a week for the 1st 2 months, and then "graduated" to every other week for awhile, and then to once a month and at this last visit, he said that he only wanted to see me every other month now. EEEEEEEEEEK!! My doctor is slowly cutting the umbilical cord! He laughed when I told him that but it's true really. There is a bit of anxiety associated with the fact that you are not seeing your doctor as often. Of course it's a GREAT thing, but when you think about it, I have been seeing him basically, except for a few months, once week since April of 2007!! That's a long time. We have a relationship. So now the little bird (me) is slowly being nudged to the end of the nest and looking down and seeing how far it is from the top of the tree and wondering if I really do have the wings to fly. Him and his staff have supported me and been there for me through the worst of times. I know it must be gratifying for him to "discharge" patients as that means they are well enough to only come back for annual checkups which of course is ultimately my goal as well. It's this middle ground I'm still feeling my way around. Kinda like being a teenager I guess. Not a child and not a grown up yet. Yep....that's me for now :)