Tuesday, March 31, 2009

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.......

Saturday, March 28, 2009

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.

Friday, March 27, 2009

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.

Thursday, March 26, 2009

Today I am.....

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

All 4 of these emotions I cannot afford.

Wednesday, March 25, 2009

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.

Sunday, March 22, 2009


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.

Friday, March 20, 2009

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, Check Spellingwhich 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

Thursday, March 19, 2009

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......

Tuesday, March 17, 2009

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?

Monday, March 16, 2009

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

Saturday, March 7, 2009

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. :)