A "Normal" Day.....

Wow....I think I just had a "normal" day! Pinch me....am I dreaming? I met Ashley at 10:30 am at the car place, as I gave her my old station wagon, and it needed a new gas filter and a shot of freon for the AC, especially right now in this unforgiving heat we are having. On Saturday when I gave her the car, we had gone to the oil change place and had that done and they told me it needed a new gas filter, but they charge up the wazoo for stuff like that, so I didn't want to have it done there because I have a guy that works on my cars and he did it like $24 cheaper today. So I met her up there, and then went to pay my property taxes, mailed something at the post office and then we came home and chilled for awhile. Later on, we went to pick up the car and I was in the mood for an IHOP crepe so we stopped and had an early dinner there and then came back home and she then drove back to her house in Daytona. See what I mean? It was normal! I'm not draggin butt.....feeling damn good actually, so I continue to be amazed at how a lack of those little red blood cells can wreak so much havoc in your body, and for the length of time it can last. For 3 whole weeks I thought I was slowly dying. It really felt that way. I finally scheduled my bone marrow biopsy for next Tuesday at 11:00 AM, but I have to be there at 9:00 AM as it is considered an outpatient surgery so you get assigned your little room and they start the IV's.....you know the drill, and then will have the biopsy and go into the recovery room afterwards. I can drive myself for the pre-appt on Monday to do the paperwork etc, but can't drive myself the day of the procedure because I will be having anesthesia. Hey Bobbie,( or Lissa to tell your mom), if you're reading this...and....if you aren't doing anything next Tues, come take me (aren't I getting better at asking for help?) LOL.... for my biopsy as there will be plenty of "down time" and we can be together the whole afternoon. Give me a holler and let me know if you're free that day and can take me, otherwise mom said she will. Other than that, I'm excited about getting this scheduled, so then I can begin my new IV chemo Velcade the Thursday after the biopsy and hopefully get the ball rolling on decreasing these pesky MM cells floating around and being a pain in my ass and interfering in my life. Just everyone keep your fingers crossed the RBC hold steady and I feel this good when I go in for the procedure :) Now that would be awesome.

Just a Quick Update......

I did have some slight reactions to the transfusion of Friday, none of which were unmanageable. Later Friday nite I had some diarrhea and that was that. On Saturday I had more diarrhea and a slight headache, which went away with some ibuprofen. All in all, much energy returned and that was my BIG BIG hope in having this procedure. So, it was successful in my book. I'm not 100% re-couped by any means, but if you compare the way I have been feeling the last 3 weeks until now, I say schedule me for a Bungee jump or something! It is so amazing that a low red blood cell count can give you such anemia that it can make you feel the way it made me feel. Truly amazing, as the difference now is like night and day. I am heeding my own warnings now though and not "overdoing" the minute I DO feel better (which is my usual MO), as I want to keep this little reserve of energy for as long as I possibly can, so I will take it easy and take it slow for now. I did find out the bone marrow biopsy will be some time next week (today's Monday, so not this week) which kinda bummed me out, as I really wanted to get started on the new chemo Velcade ASAP, but hospitals can only do so many procedures in a day, and they were booked solid for this week, so it looks like it may be Mon or Tues of next week. We want the results of the biopsy BEFORE receiving this new chemo, to see exactly how many cancer cells are doing the hokey pokey in my bone marrrow right now. Isn't that crazy that the great thing in life I'm looking forward to is having a bone marrow biopsy and starting a new chemotherapy that is so destructive to ALL cells of the body, not just the "bad ones". LOL....the way your thinking changes and your priorities change when you are battling cancer is just downright scary and crazy. Welcome to where I live at the moment..... "Bizzaro World"!

Blood Transfusion Day......

The alarm went off at 5:15 and I hit it twice. The plan was to go to bed early, which I did, as I turned the tv off around 11:30 pm and fell asleep shortly after. BUT THEN.....around 2:oo am I had to pee, so I woke up and made my way to the bathroom. When this normally happens (pee in the middle of the night), I get up in zombie mode, pee get back into bed and just roll back to sleep with no problem. I guess when I got up to go last night, a thought of having to get up in a few hours for the transfusion came into my brain and that, my friends kept me up until 3:30 am! After laying there awake for an hour I finally turned the tv on and watched some infomercials (LOL) and finally fell back to sleep around 3:30 and then the alarm went off at 5:15. UHGG. That's why it got slapped twice at 5:15 and then I finally decided to get up and start the day. As I've said before, it really does take me a while to physically move in the morning due to pain and stiffness issues, so by the time I got to the hospital for the transfusions it was 7:20. Oh well.....beat me with a stick. Turns out they really weren't ready for me anyway (they probably tell you to get there at least 15 min before they want you there anyway) as the needle entered my arm at exactly 7:40 am. The 2 bags of blood took 3 hours to infuse and then out the door I went. Now last time I had a transfusion, I experienced an increase in heart rate to where I thought I might be having a heart attack and my pulse ran around 130, which really got kinda scary. I also ran a small temp (around 100.2) I had left my post transfusion instructions there by accident last time, so didn't have a sheet to refer to so I didn't know if this was a reaction and normal or abnormal. I was really close to calling the ER that night but decided I would be ok if I could just go to sleep, and I did and was better and better but the heart rate and small fever did last 2 days. Well, today I read and kept the instructions on transfusion reactions and guess what #1 is? INCREASED heart rate, RAPID PULSE and HEART PALPITATIONS! So I guess I wasn't losing my mind last time. (good to know...good to know)`Just FYI the others on the list are: skin rash, fever/chills/flushing, headache, backache (now that one's gonna be hard to tell :), diarrhea (that one won't be hard to tell) and finally fatigue (laughable one for me, huh?) I remember last time too the symptoms came on later in the evening....around 8:00 pm or so and it's now 7:15 pm. I don't feel bad at all, so fingers crossed, I'll skip the ole symptoms this time, if that's ok. So all in all, it went well and I'm feeling OK.

No New Chemo Today......

Had an appt with Dr. Nair today and after getting blood, weight, blood pressure, temp, etc etc and answering oh so very personal questions like do you have diarrhea or constipation (heehee.....believe me, once you have cancer there is NOTHING personal left about you!), I went in to see the doctor. Oh by the way, the weight from tuesday was correct (I was so hoping it wasn't) as today I weighed 92.5. YUCK We talked for a while about my situation, (I am NEVER rushed by him.....ever), but I'll give you the Reader's Digest condensed version here. I will be going to the hospital at 7 AM tomorrow morning (kill me now) for a 2 bag blood transfusion to get these reds up. Apparently, the MM has become so active and obviously aggressive right now, that the procrit just isn't able to bring the reds up by itself. Hopefully I'll have a better result than the last time I had a transfusion, as I didn't notice a difference in the way I felt. It must have worked on a physical level though as it was about 6-8 weeks since I had the last one I think. Dr. Nair and I also agreed that I will also be scheduled for another bone marrow biopsy next week.....oh....now that's a fun way to spend the day! We did not start the Velcade chemo today, as he said that now that I have fully relapsed, he would be more comfortable knowing exactly where we are starting from at this point, and I agree. When I was first diagnosed, my bone marrow contained 65% cancer cells, so now that we are starting down the road again, he (and me) would like to know where I am exactly starting from now and it will also assist him in helping to determine how aggressive he needs to be when treating me. He said my MM #'s will decrease once I start on this new additional chemo so he wants to wait until after the biopsy is done to begin this additional chemotherapy. SO tentative plans are start on the Velcade next Thurs. When I get in for the biopsy is up to the hospital scheduling. I don't think I mentioned that I have an appt in mid-July at Moffitt Cancer Hospital with the doctor who was in charge of the BMT process. He is a very famous world renowned doctor that specializes in the treatment of MM. The appt is to basically have my one year check-up and Dr. Nair will also talk to him and discuss what he feels are all the available options for me are at this point in time. I drove myself to the docs today as I was feeling up to driving (and to give poor mom a break) but it took forever because of having the transfusion tomorrow, they had to draw additional blood and complete paperwork, and then I had to go to the hospital and register in out-patient and give them my blood so they can type it and have it ready for my morning "cocktail" tomorrow. This running around today wore me out (only so much gas in my tank right now) so I came home, drank a boost, had a little sumpin sumpin to eat and just chilled. Gotta go to bed early tonite as I have to set alarm for 5:15 AM to leave at 6:40 AM because these ole creaky rickity bones need their time in the morning for the heating pad to loosen them up and time for meds to kick in prior to being able to move. Mentally feeling ok, actually. I knew going into this that there would be ups and downs and I'm just in a down right now but "this too shall pass" and things will turn around. Even though we intellectually know this, when the downs arrive, they do throw you for a loop, no matter how prepared you are. Once I feel physically better too, there'll be no stoppin me :)

A Teensy Bit Better today...

and I mean teensy, but hell, I'll take what I can get at the moment! Found that I could navigate the house without the cane today as I feel a little bit stronger after having had the procrit shot for my low reds yesterday. I was really wracking my brain to figure out HOW ON GOD'S GREEN EARTH, could I make myself start feeling better. That's the frustrating thing....it had to be a medical intervention, that I had no control over. I do believe the shot helped to kick start the reds to start working....wonder if they have a portable thingie to plug mself into when I start feeling shitty? I know my body well enough to know when something is happening and it definitely was, as proven that the shot has made me feel a bit better today. Even threw in 2 loads of laundry today...woo hoo. Dang....I'm not asking much am I, when all I'd like is enough energy to do some simple household tasks right now? I still don't know if I'll be starting on Velcade tomorrow or or not, since I'm not up to par. Have appt at 10.45 am tomorrow, so I'll pack a little "chemo bag", just in case I do. Chemo bag contents: small blankie (it's cold in infusion room)....my I-Pod, 2 magazines, the morning paper, a book and some small snacks, esp since my weight yesterday was 92! Isn't that pathetic? I must look like skeletor. I'm not sure it was the right weight anyway as I wasn't paying attention when she weighed me (and kind of got a ditzy girl I rarely get) and to lose 2 1/2 pounds in 5 days seems a bit much, so I'll pay attention tomorrow and see where that is too. Added 2 Boosts to my daily regime (gosh they are filling), but I gotta pack on some weight as that too can become a detriment to healing if my weight gets too low. Sheesh....anytime, anyone wants to stop the merry-go-round, (or even slow it down), I promise to get off :)

Went to Doctor's Today.....& Unexpected Visit Yesterday....

As I said yesterday, the doctors office had called to tell me they were calling in a scrip for potassium as it was low again and I told her how horrid I was feeling, so they gave me an appt for today. Mom, my angel, came by to pick me up (still no way I can drive right now) and had the bloodwork done and yes...I needed another shot of ""procrit" to help those little bugger RBC get on the job and start making me feel at least half-way human. My WBC were in the normal range, but those reds...dang....they were 1/2 the count they should have been, as well as hemoglobin and hematocrit in the tank too, so fingers crossed, this shot will help in kick starting the reds and get this low blood cell crap off the table for a while. I am supposed to start my new addition to chemo, Velcade, at my Thursday appt, but I have my doubts it will start that day. Maybe yes, maybe no, but I know in the past he hasn't wanted me to start anything new, while I'm currently dealing with something (right now it's the UTI, low red blood cells, & low potassium,) so I really don't know if I'll start the new chemo on Thurs or not. I really don't know much about this new chemo yet, except what I have read), so I don't know if it will matter if I'm dealing with other issues or not when I start it. I'll let you know. I know in the past he has even had me hold my chemo when battling a UTI (I am still taking it this time though). I would think that starting it when I am "feeling better" (HA HA HA.....loaded question these days)) would make more sense, but he's the doctor, so I don't know what call he'll make and it's still 2 days away, so who knows how I will be feeling after this shot today. I do believe in miracles, so anything could happen between now and thursday. Just a side note to again, sing my mom's praises, let you all know what a wonderful mom I have.....she dropped everything last nite to go grocery shopping for me and get some needed items. I really don't know what I would do without her. And also a note about, Melissa and her great mom,Sharon. My daughter Linz had called me during the day yesterday (yeah...the one that AWAYS ask the direct question"how are you doing today?") , so I told her the truth, as long ago she made me promise I would not hide anything about this disease from her. Well, when she found out how I was feeling, she called Lissa, (they have been best friends since elementary school & Liss lives local and Linz lives in Vegas) who told Linz that she would grocery shop for me (yesterday). Linz called again later and I told her that my mom was going to grab what I needed, so to tell Lissa I was ok. Well, about an hour or so later, who comes to the door, but Lissa and her mom with a beautiful bouquet of flowers (yes....they DO cheer you up, they are so pretty) to check up on me and make sure I was OK. What a surprise and a nice visit from two thoughtful people. They said to make sure I called them if I needed anything (to help take some of the burden off my mom too) and that they would come whenever I needed them. Makes me cry that I have really really awesome people in my life that will be there for me). I am slowly adapting to the the fact there are going to be times when I CANNOT do certain things and have to ask for help. Still don't like it.....but adapting.

Short Note on Today......

Unlike most of my posts, this one will be very short and very brief. Still feeling absolutely horrid and I've noticed the last few days as I am becoming weaker and weaker, my balance is in jeopardy so I started using a cane today to walk around as a precaution against a fall. I kept hoping I would feel better as the day went on, but that didn't happen, so I called my Mom to ask if she could pick up some groceries for me. I hate asking people to do things for me. Just hate it. I know they don't mind.....I would do it for them in a heartbeat, but for me to ask for help is such a big deal for me, and I guess it shouldn't be. Being an independent woman, comes back and bites you on the ass in times like this. Doctor office called today and said results of my bloodwork are showing low potassium again, so they called in a scrip that we will get tomorrow. While on the phone with them I told her how I was feeling and they set me up for an appt to receive shot for RBC tomorrow. I am at a loss as to how else to help myself get over this hump.

<<< RELAPSED >>> :(

As you've been reading in my last several entries, I've continued to report the continual UTI's and extreme exhaustion I've been having. I know I sound like a broken record. I had an appt with Dr. Nair yesterday and and we discussed the results of my last "send away to the lab" bloodwork that indicates how my MM is currently behaving and its been a bad bad girl. He was sorry to report that my MM numbers have increased significantly, to the point that I am in total relapse mode at this time. I was lowered on the Rev mg b/c the 25mg just crashed all my blood levels, to the point of even requiring that blood transfusion, so I was lowered to 15 mg. because we had no choice. I guess the 15 mg are inadequate to keep this aggressive form of cancer under control, but we know what the 25 mg did to me, so that's not really an option. You can't heal when your blood numbers are so low. This was devastating news to me yesterday, although I had a sneaky suspicion that something was wrong, because I was getting these recurrent UTI's.....with little break in between them. Something was wrong.....right? I must say though, the MM number came back yesterday is over that 25% "semi-comfortable we can control this" range. So now, I look back and think......WE went through all that misery of the BMT and in all reality I only got 10 months cancer free. Was it all worth it? I don't know. Having this disease just thrusts your life into unimaginable places, takes you places you never dreamed of being, and the only thing I can do, and manage is things I DO have control over. (Insert Serenity Prayer here) Thinking along those lines, I can control my diet, I can control taking my meds, I can control keeping doctor appts. and tests and treatments, and I can control the way I handle this emotionally and spiritually. Those I see as all I CAN control in this situation. For anybody out there that has "control issues", this is not the disease to get! LOL The bottom line right now is that we agreed I will be placed on ANOTHER form of chemotherapy in addition to the oral chemo and dex I am currently on. The new chemo is called Velcade, which I have researched, and it does have reports of many positive results. What I don't like (besides all of this) is this new chemo is ONLY IV.....shit.....it is 2x a week (mon and thur for me) and about a 3 hour infusion (could be worse). I will do this for 2 weeks in a row and then have a 10 day break and continue on this schedule. The long term plan is if I respond to this positively, we'll stay on this for a year, and then repeat all bloodwork, scans, tests etc....the whole shebang and see where I am at that point. The prayers go up for positive results for the addition of Velcade and that I don't experience the side effects that are possible for this strong chemo. I'm not a big "side effects" person as a general rule, so I hope that my luck holds out for this drug as well. I feel so betrayed by my body right now.......angry....hurt.....resentful.....and I know I need to feel these emotions and then let them go. My usual behavior is to sit with them for a few days, process them and then move on. I just found out all this yesterday, so I'll need a few days, but I know I'll be ok. I have faith this will work. I have faith that I will get well. I know I am in good hands with a doctor that does not put me on the back burner and has my back. I am stubborn and I am strong. The possible scenarios could be much worse, so I am thankful I have medical options, even beyond Velcade. I received an email from a friend of mine a few days ago and it was like a funny but true list of things old age teaches you and one of them said....... "If we threw our problems in a pile and saw everyone else's, we'd grab ours back". It made me laugh, because of the stinging truth. So that leaves me with........this sucks.....I hate it...but, I will survive.

Body & Mind Struggles.....

I've said on my last few entries, how absolutely fatigued I have been feeling. I had my weekly Dr. bloodwork appt yesterday and found out why I have been feeling so horrid. To make the story short...I have another UTI that is kicking my butt...my RBC are so low that I have severe anemia but could get away with just a shot for it this time and not require a transfusion, but was right on the line with it, and I have low potassium. Each one of these by itself could give the normal person to feel fatigued, but when it's a person with an underlying disease process and then you add ALL 3 to the mix....well no wonder I have been complaining of feeling so bad this last week. Just so bone tired. Tired to move around. Tired. Tired. Tired. As referenced to in my May 26th entry, my ability to "override" the sad/negative feelings you feel when your body is not feeling well, was something I was going to be working on. It's easier to stay positive when you are feeling good, or shoot, I'll not even push the envelope, and go as far to say even feeling decent in my world, contributes to maintaining a positive outlook.... Well, as the "old joke" goes, watch what you pray for (oh yeah.....insert a 1/2 hearted chuckle here), as I am being put to my own test in working on that area, as for the last week I have been on a physical downward spiral again, with the struggle to remain in a positive state of mind, struggling along with my body. I don't know really what to call it exactly, as I don't feel that it's so much a "negativity" that takes over the "positivity" per se, so I really don't know what to call it exactly. I would describe the symptoms as I cry easy, thoughts of "I'm so tired of being tired" roll around in my brain, so I suppose that could come under feeling sorry for myself, I look around at simple (ie. sweep, laundry, vacuum etc) things to be done in the house and just let them go as I don't have the energy to even do these small tasks, so this contributes to feeling angry at the inability to perform. Literally this week, I have been unable to walk down my driveway (it is a long one, but no excuse) and get the newspaper to read in the morning. I have had to drive myself down and then check the mailbox for any mail from the day before because if I didn't have the energy to get the paper, I certainly didn't have it to go back down and check the mail in the afternoon.....how pathetic is all that? So that in turn also adds some anger. And then what I guess I am calling a lack of positivity, is due to the inability to do the things I want or need to do. This in turn pisses me off to no end....that lack of control I am having over all these little physical set-backs are pissing me off, the physical effects I am having from these infections and low whatevers, all swirl around together and effect my attitude. I use this as my forum for talking about my true feelings, as to talk them over with family or friends....well dang, with this disease you can begin to sound like a broken record, so I don't even like to mention things, yet when asked the direct question (which my Mom & Linz do EVERYDAY).."how are you feeling?" (that's a loaded question to someone in a daily battle it seems), well hell, I'm such a bad liar, so I answer their question, as vaguely as possible when NOT having a good day, although not all the time. I suppose it all goes back to feeling that lack of control of what it going on with my body. I struggle with maintaining a positive attitude right now, but I'm not gonna lie. It's hard to have my mind over-ride the physical aches and pains and fatigue that I am feeling right now. They say that knowing the problem is 1/2 the battle, so I know that I need to work on this. Earlier today I felt myself giving in to tears and sadness, so I made the house quiet and read my meditations, and then brought out my little hand held meditation balls (thanks Patty) and just concentrated on my breathing. Slowly in and out. Sending healing light throughout my body. I began to settle down and back away from the tears. Focusing on the might and my breath. Getting further away from tears. I focused for about 30 min when I began to feel better. So that's what I did today to attempt to bring back a positive focus, and yes, I did feel better for awhile, and as the day ticks on, I'm starting to feel draggy again, but will continue to use the tools I possess to engage in this battle for my head and heart over my body. There are way way worse things I could be dealing with when it comes to my body, so yes, all in all, in the big picture, I'm just pissing and moaning over the small stuff, I know. And for that I am thankful, and is a huge contributor to one of the main reasons I don't stay where I am mentally right now for very long. This is small stuff I will move on from, but here is where I promised to share my journey honestly.

Nothing Particular Buzzing Around.......

in this little chemo brain of mine today. :) That can be a very good thing! The mindless wanderings, do take me to places, of course, but I am using my powers of choice to allow them to flit in and then flit out as quickly as they occur. When something I want to expand on, pops into my brain, I keep a little notebook nearby and jot down what the topic was, to come back to, at a later date. Alot of it may have to do with the wave (mini-Tsunami?) of fatigue that seems to have settled in over the last 4 or so days. Not to be compared with the pre-BMT fatigue I experienced after having been on chemo (Revlamid) for 14 months. During that time, to change positions in the bed required an Act of Congress (and we know how swiftly THEY tend to make decisions), so it's nothing along those lines at all, just an over-all pervasive feeling of being dog ass tired. (wonder who made up that phrase?.......and NO....NOT something I will expand on at a later date....LOL) I have though, in the last few weeks, received some very uplifting emails that have made my day......made me happy and made me surprised. They are from "friends" I just haven't "met" yet. They are from people that in whatever way, (the Universe does nothing by accident), seemed to have stumbled across my blog, read it and then took that special extra step to email me a note. And yes....it is SPECIAL to me. I have NO idea, who reads my blog, except for those who have signed up as followers, so to receive an email from someone who follows, but I don't know follows, is such great feedback and I truly truly appreciate it. Diane, if you are reading this, you are on my "to-do" list, as I felt an instant connection to you when reading your email and I will be writing you back soon. If you happened to come across this blog and felt it helpful in any way, you have my blanket permission to share the blog address with anyone you know who is battling this disease, or any cancer really. Caretakers of cancer patients may also find it somewhat helpful and I know my family members who held my hand every step of the way, are also open to any emails or notes if they can be of any help to anyone. Share my blog in support groups, with a therapist, or place a link to it, on any web page you may have or go to frequently, like Facebook, My Space, or a special interest group you may belong to etc, or with anyone you think may reap even a little bit of support. That's why I decided to "put it all out there". The way I look at it, is I (along with many many others) am just one of many tools to assist in the battle against cancer. Support is crucial, no matter where it comes from. If you or anyone you know, has any questions that I can help with, don't hesitate to email. If you just want to talk, vent, scream, yell or share the mini miracles that happen to us, you are not "bothering" me at all, it's actually the opposite.....I receive joy from and get a lift from hearing from you. We are ALL in this together......this battle....this war and the more "tools" we have in our arsenal, the better equipped we will be. If you do follow this blog or even check in time and again, please sign up as a follower (I think it's at the bottom of the page, but I'm not totally sure.....but I know it's on there somewhere), just so I can get a better feel of "who" I am talking to. Thank you for being there for me and spreading joy, there's just not enough of it out there, and it doesn't cost a cent to make someone happy and surprised. You'd be amazed, and of course, we all know what comes around, goes around.

Positive News at Doctor's Appt. Today :)

Today was my monthly visit with Dr. Nair. Actually, I go to the doctor's office once a week to have blood drawn and have a complete blood count done (CBC) in the office, to check on what those little bugger white, red, hematicrits and and hemoglobins are doing as well as checking on my levels of coumadin, a blood thinner, which I have to take to prevent blood clots from forming (a common side effect of chemo). All tests came back pretty good...a little low on RBCs but that seems to be my norm, and nothing that needed additional attention. I have always tended to run low RBCs throughout this entire Multiple Myeloma shindig, which will give you anemia, so that's the reason I tend to feel fatigued most of the time. They are not low enough to take some sort of action (ie transfusion), just low enough to be a pain in the ass and make me feel tired! I just do my best to ignore it as best I can, and and go about "business as usual" :) One of the many things I love about Dr. Nair, is I am NEVER rushed when I see him. It's actually almost the opposite! Not only do we go over all the medical "stuff", but he takes more than enough time to find out how I am actually doing (mentally, spiritually etc). How many doctors do you know who do this? Most doctors I have ever gone to in the past, well you know how it is....they seem to be in a race to get in under the allotted 1o minute obligatory time frame allowed. The more patients you see, the more money you make. That sounds so cynical, but sorry to say, it is basically true. It's the way the medical system is set up. My doctor shares new information about MM that he is newly made aware of whether it be through his personal reading or seminars or talking to other doctors, and he just got back from the ASCO yearly meeting, and said he will photocopy all applicable MM material and give it to me at my next visit. Again, he knows I like being an informed consumer and that I appreciate staying up-to-date on my disease, so he is willing to share, all the new ideas, drugs and studies going on that have to do with MM. I really love my doctor for all these reasons and more. Today during my visit, I broached the topic of being at the 2 1/2 year mark since diagnosis and since most (all?) literature say the standard life expectancy is 3-5 years, I asked him what he felt about that as it pertains to me and my particular type of MM. He told me those are "old" numbers and that at this point in time, there have been and continue to be sooooo many advances in the research for MM that those numbers are meaningless at this point. He told me with as little chemo as I have had on this 2nd go round and having my MM numbers as low as they are, we are going to stay the course because I am responding so well. I then asked about the use of Velcade (another semi-new drug being used in MM, instead of the dex) as I had read that it had better results than the dexamethasone I am currently on and he said that he would have considered using it with my current arsenal, but again, because of my positive reaction to the current regime I am on, he is "saving" that for when I truly need it. He is stacking up a bunch of "big guns", in case this becomes a "war", rather than just the battle that it currently is. I am considered to be in "partial remission" at this time, which is the next category down from remission. It means that yes, I am showing there are MM cells in my body, but they are in the normal range and not wreaking any havoc at this time.

The Most Important Relationship.....

We all treasure our relationships with those we love. We love those in our family and we love those we call friends. There are, of course, different levels of intimacy involved in different relationships. We share more information with certain others more than others. We share more thoughts with certain others more than others, and I suppose that is just because we feel an increased level of intimacy with some people more than others. The most important relationship that we are honored to have in this lifetime though, in my humble opinion, is the relationship we have with ourselves. To strive to build an honest, loving and truthful relationship with ourselves is the one most important thing we can do for ourselves AND for those we claim to treasure and love. Getting to really know how you feel (using feeling words, not thinking words), makes us truly who we really are. Once you become acquainted (or re-acquainted, as the case may be) with yourself, the next level is being able to express those feelings with those we love. I'm not talking "generic" either, I'm talking specifics. I love you because you make me feel___________. I love you because when I'm with you I feel ____________. I love you because when I think about the time/times when we ____________, you made me feel _____________. These are just a few examples of what I'm talking about. To be able to express ourselves at this level, at all times, is what I think we should all strive for. Can you imagine leaving a greater legacy than being remembered as a person who was truthful and loving and honest in all of your relationships? And not even remembered per se, just being recognized and respected and loved NOW for being that kind of person. I know that I WANT to be remembered for being THAT kind of person first and foremost, and recognized now that I am following that path as we speak. It is very important to me. To be able to reach this higher level of consciousness, however, takes a constant striving on our part. An active working on ourselves and the way we feel and a continual consistant way we express ourselves to those we love. What we need to remember though, is this is an ongoing process. Life is a continual process. There are the proverbial 2 steps forward and 1 step back in all our lives. It won't happen overnight, if you haven't begun to explore that part of yourself, nor will it be a one time deal. Getting to truly know and love and forgive and like and be honest with yourself is a constant, daily (minute-ly, hourly) process. I cannot think of a better, more loving way to communicate with those we love though. To be your own true self and be comfortable in your own skin and be able to share that with others is such an honor.....to yourself and to those we love. I think we all need reminders now and again, of what our priorities are in life and I just wanted to share one of my most intimate priorities.

Walking A Thin Fine Line......

I addressed this gently several entries ago, but want to write a little more about it....thank you for indulging me while I "think and pray out loud". As a person that has a life threatening illness, I find myself walking a thin fine line. What line you say? The thin fine line that the doctors "medical speak" about, the thin fine line that all the research reports, the thin fine line that studies and trials that are done say.....about whatever your particular disease may be and what it holds in store for you. The other side of that thin fine line is my spiritual beliefs, my metaphysical beliefs, and my deep down gut feeling beliefs, that I WILL find a way to live a longer, healthy and productive life despite what "they" say. Many many years ago, I embarked on a quest....a spiritual journey you might say, to get to know myself, understand myself and to figure out the most productive way to handle life "issues". That's when, to make a long story short, I say to all, that my "mantra" for living is the Serenity Prayer. A shortcut refresher...."Lord, Grant me the Serenity to accept the things I cannot change, courage to change the things I can, and the Wisdom to know the difference". For me, that pretty much is all there is to it. So few words, that to me, explain so much. If I can do something about something, well I'll do my damnedest to it. If I cannot do anything to change the situation, I turn it over to the Universe and then get out of the way! :) (that's the hardest part, by the way!) My present work is cut out for me, I am well aware, but when I compare the strength of MY feelings and put them square up against what "they" say.....well I must tell you, my feelings win out. I can't truly put my full beliefs into what the medical world tells me when placed up against what my higher self is telling me. There are too many unexplainable things that occur in this Universe.....dare I call them miracles? There is SO MUCH more that we do not know, compared to what we do know. (no matter what your IQ is!) I have thought long and hard about even writing about this, as I'm sure some of you are thinking...ok..she's finally lost it (time to check her temperature) LOL :) But to those of you who really know me and my core beliefs and values, understand what I am talking about. I just cannot fully believe that my time is as limited as they say. I refuse to believe it, and am placing my beliefs uppermost at this point and that's my new starting point. Don't get me wrong, the medical profession knows ALOT about alot.....but not everything. They do not have all the answers. They work with numbers and statistics and the scientific explainable. Only the Universe holds all the answers and that's where my strong connection is. There of course is a time and place for medical interventions, that's why the Universe made doctors and scientists, but the greater interventions are from the unknown......I believe we have an untapped power to create and to change so many things that we are unaware of. What made me write about this or even to begin thinking about this part of my life? SPRING CLEANING (I knew it had to have a purpose besides getting rid of old stuff you should have chucked years ago!) When I started the Spring cleaning process over a month or so ago, I pulled out many of my old books (my gosh, some of them are from the 80's when I first started this spiritual journey), and gave myself a short refresher course to begin the quest again and with hopefully a different perspective than over 20+ years ago, (assuming one becomes wiser as the years go by) and felt this overwhelming feeling of relief.....like a boulder had been lifted off my shoulders......somewhat like I had also been given a map of sorts, to begin anew my return to ACTIVE questing. It's always been there (ie, see Serenity Prayer above), but truth be told, I haven't newly quested in a many years (although I still toss my Runes from time to time) and I interestingly enough (nothing happens by accident) also have been given, within the last few months, some new material to read as well as different visualizations and other tools, to assist in my renewed excitement to begin active questing once again. All of these little pieces came together to gently nudge me to again renew my active commitment to my spiritual self. I pray to be and to remain open to all that is being shown to me. It will come in many forms.....people, places, things, animals, and nature. All we have to do is believe.

A Few Days Difference......

What a difference a few days makes....especially when those 2 days are filled with taking antibiotics 3 times a day! LOL Sinus, swollen node on neck and pee pee problems are slowly but surely going away. I can feel the difference in my body. My last entry was written while having a slight fever and aching all over and just feeling downright fatigued and shitty, and yesterday and today I woke up feeling near to normal. ......and yes......feel gratitude and gave thanks for this difference. It again showed me that when we are at our lowest physiologically, it is more difficult to stay positive mentally. I have always believed in the direct mind-body connection, so just my little addition, that at least for me, it is so very true. The "trick" I suppose is to be able to "override" the physical aches, pains etc. and transcend into positive mental-ness WHILE feeling physically ill. AHHHHHH.......to do that, my friends, is on my agenda to continually work on. I don't know who said this but it's a quote I remember that says something like....."to reach great heights, you need to go to great depths", something that we should all keep in mind, no matter what your situation may be. To again, really know that deep down, it will get turned around and something better, new and brighter awaits us on the other side of turmoil and trouble, whether it be mental, physical, or spiritual.

Feeling Kinda Low.....

I haven't had such a good week this week, although I'm trying my damndest to "shake it off" and "buck up". I receive emails from several organizations about the disease of Multiple Myeloma, that are full of new information, new drugs, clinical trials etc., basically being very informative about my disease. I've always believed in being an "informed consumer", whether it's buying a product or knowing about your disease. When I was first diagnosed in January of 2007, I searched and researched about this disease, joined online support groups and generally and specifically looked up what it all meant, from lab work results to tests and everything in between. I also think that just having "celebrated" (!?!?) the one year Anniversary of my Bone Marrow Transplant, lots of things have risen to the surface for me in the last week. In addition.....a dear friend, who is one month ahead of me in transplant world, just found out that he too, has relapsed so he is back again on this crazy merry-go-round of cancer world. While reading some of those articles on MM, I came across one that hit me hard. Really hard. A very matter of fact article about death for MM patients, and it outlined pretty much what would happen and why. Don't get me wrong, I'm glad I read it, because I don't want any surprises, but it did cast a shadow over how I thought I was handling my disease. It also stated that the "median" age from time of diagnosis until death is 3-5 years, and I am on the 2 1/2 year mark, which in all reality, brings me closer to what is going to be my reality. It made me realize how I can't keep put off getting my affairs in order. It's time. I don't want to sound morbid, it's just where I am right now, and I know you never stay in one place forever, so I do know I will move out of this funk, but honestly, aren't I entitled to be sad sometimes and scared? I am both right now. Denial can be wonderful thing, but you can only do it so long, and no matter how much you want to keep it, reality comes a knockin' with a vengeance. I plan on outliving the "expiration date" label they put on this disease and will fight as hard as I am able, but I also need to be prepared, as you never know what will happen. Like right now, I physically feel really crappy..I have what I think is a sinus infection, the node on the left side of my neck is so swollen it hurts to move my head and swallow and then to top it all off, it burned when I peed this morning, so I may be working on another UTI. That's what happens with MM....your resistance to infections of all kinds decreases because we have a cancer of the immune system. Isn't this the most ironic cancer to have? I have a cancer of the part of my body that fights infections, so my body can't even help in fighting the cancer I have! I really haven't talked about this much till now, although I did send my sister the article about death from MM, because I thought she could handle it out of everyone. I had to laugh though, as she writes back that yes, she too is in denial and wants to keep it fully intact! Ahhhhhhhhhh..what a great defense mechanism it is! So that's where I am today....not feeling physically well, completely exhausted and fatigued for no reason (just finished my 2nd round of chemo so this is my off week) and mentally, I guess I need a break from the ongoing fight, so I'm giving in to tears and feeling sad.

The Personal Stuff......

I have just been in a whirlwind of activity these past few weeks, and having so much fun! First thing that happened......on Mother's Day morning, I get a call at 9:15 am and see by the caller ID that its from Lindsay, who lives in Las Vegas. My first reaction to seeing the number was "ut oh" because of our time difference. I knew it was just 6:15 AM in Vegas, and that means for her to call me that early, well, something's just not right, or she hasn't been to bed yet!! So I answer the phone and she explains that she sent me flowers for Mother's Day and the flower guy was standing outside by the garage door, as he needed a signature to leave the flowers. So I was like "awwwwwww", let me get off and open the garage door, get the flowers and I'll call you later. So I hop out of bed (was doing my drink morning coffee, reading the paper routine) and I opened the garage door and there is Linz standing in the driveway! I was stunned! I never dreamed that she was here.....everyone kept the secret.....so I just grabbed her, held on, and started to cry as I was so happy. Happy Happy tears. I haven't seen her since Christmas, so it had been 4 months since I had seen my baby girl, and that's just too long in my Mommy Book. Linz and I talk almost everyday, but that's just not the same thing as seeing her. Kevin had also come up to stay here for the weekend to celebrate the Mother's Day weekend with me as well as to spend as much time as he could with the girls too, so he was standing there as well. What a surprise and THE BEST Mother's Day present I could ever dream of getting! So we hung out here for awhile and then went to pick up my other daughter Ashley and then went to the Flea and Farmer's Market in Daytona ( gosh, I hadn't been there in like forever!) and walked around and shopped for a while, went to lunch, and then to this specialty chocolate candy store for some goodies, and then came home. The next Day was Sunday, Mother's Day and I had made plans with my mom as she said she wanted to go to breakfast for her "present" so we got up and got to the restaurant around 10:00 am and had a great breakfast at a restaurant owned by a friend of mine. It was me, my mom, Linz, Van and Kevin at breakfast. Kevin left for West Palm Beach after breakfast as it's a 3 hour drive and he needed to get home to do something with his mom on Mother's Day. We all had a great time. Linz then took my car and headed over to Daytona to visit with her sister who lives in Daytona right now, so they visited for awhile and then when Linz came home we went over to her boyfriend's parents house to say "hi" while she was in town and to see his new little nephew who was born while they were in Vegas, so her and Anthony hadn't seen him yet. We stayed for an hour or so, took some photos of the baby for her to take back and then came home to spend the rest of our time together as she was leaving to go back to Vegas early Monday afternoon. On Monday before she left for Vegas, we went to spend some time at my Mom's house as I wanted to give Mom her Mother's Day gift (I got her one of those digital photo frames and had loaded over 400 pictures on it!) and we wanted to play with her new puppy Abby too. So me, Linz and her oldest and dearest friend Melissa went to Mom's for a few hours and then Liss took Linz to the airport. A wonderful present for my Mother's Day, just too short of time :( THEN......
As I wrote on my entry dated May 15th, that day was the 1st Anniversary of my New Birthday.....making it ONE YEAR since having had my Bone Marrow Transplant. About 5:00 pm, I heard the garage door go up and thought it was my brother (who's staying here for 10 days before going back to Colorado).....and the next thing I see is MY SISTER (and Mom) standing in my kitchen holding a dozen roses! AGAIN.....another surprise! She said there was no way she was going to let such an important day go by without being here with me. Who has a better sister than me? NO ONE! She said she came up to spend the weekend together and take me out to my favorite, cook- at- the- table Japanese Restaurant for a celebration dinner, so go get dressed! What fun! We had a great time all weekend, just being together, and looking back over this past year, and all that we have been through. We laughed, we cried, and just thinking where I was a year ago compared to today, is just a blip on the radar screen of life, and yet so significant and many memories were made during the time of my transplant. We were all together for 7 weeks going through this bone marrow transplant process, and the operative word is "all together". I've said it many times and will probably say it a million more.....I COULD NOT have done this without their support. There is just no way. They made it tolerable, fun, less painful, and more laughter. We have a good time just being together anyway, so when you throw in a bone marrow transplant, it just makes it that much more to go through and tell stories about and reminisce. We laughed all over again, about my original Birthday Party, the day of the transplant, when I wore a Birthday Princess Foam crown, Groucho Marx Glasses so I would have eyebrows when I lost my hair (yeah...the hair went but never the eyebrows or eyelashes, thank goodness!).....all the funny cards they bought.....and other goofy presents we just had a ball with. I truly have the best supportive family and sister in the whole world, and give thanks everyday, that she's mine. :) So again, another great weekend of surprise for me from people who love me and want to be with me to celebrate. I am soooooooo lucky. We all spent the weekend together, ( Ashley was with us on Saturday too) grabbed some Mexican food on Saturday night and then Kate had to get going on Sunday and head back home. That's 2 weekends in a row I have had surprises! I'll be bored to tears this coming weekend, when no one surprises me! LOL Anybody up for a road trip to come see me? LOL I've uploaded some photos taken over Mother's Day and my sissie's visit so be sure to take a look. Till later......

The Medical News....

As you know from my last few posts, I had a rough go of it for about a month or so.... Briefly.....when I was first diagnosed with news of the relapse, I was started back on 25 mg of the chemo, Revlamid and along with that, I had to start back on coumadin (the chemo causes blood clots) and also started on dexamethesone, which is a steroid type med that also has anti-cancer properties. The usual routine is to be on the chemo for 3 weeks on and 1 week off, but I still continue to take the others on my off week. After being on this regime for 1 week, I developed that massive Urinary Tract Infection so the doctor took me off the chemo while I fought the UTI. I was put on an antibiotic which I took for a week, went back the next week and lo and behold, I still have the UTI! He then switched the antibiotic and continued to keep me off the chemo until I could get rid of the UTI. On top of the oral antibiotic he also had me go back into the infusion room and gave me a bag of IV antibiotics to get the show on the road. So now, this is really the 2nd week of being off chemo after only having been on it for 1 week. At the next weekly visit (and man oh man, I had been feeling really shitty) my blood tests came back horrid. EVERYTHING was way way low....the reds, the whites, the hemoglobin and hematicrit, so that was when I received the shots for the low white blood cells (neutrapenia) and was sent to the hospital to receive the blood transfusion for the low red blood cells which was, among other things, making me severely anemic, so I went and did that. By this time, he did have me restart the chemo, but it had been several weeks since I had taken that first week of chemo before being pulled off of the routine schedule. At this time, because my blood work was just so terrible, he lowered my dose of the chemo to 15 mg, rather than the 25. He said that because I have all new blood cells because of the transplant, that the 25 mg, which I tolerated well for 14 months prior to the transplant, it was just too much for my new little baby blood cells. So the routine remains the same now, except for being on a lower dose of chemo now. At my last 2 doctor visits my blood work has come back amazingly well. White cells, red cells, and everything in between have all been coming back great. A wee bit low in some areas, but nothing of concern, or anything that needed additional attention. And the BEST part is....I'm feeling good FINALLY! YAY!
I want to back track a little bit for a minute.....when I was first told the news of my relapse, it was based on the results of a 24 hour urine test. The sensitive urine tests are one of the markers used to see if the Multiple Myeloma has returned, and then if it has, they then begin to use a very sensitive and complicated blood test from then on, which tells you exactly how much it has returned. When I was first told it had returned, it appears as if we caught it quite early as the doctor explained to be in full blown relapse mode, I would technically have to be 25% over the end range, and I was only 5% over the end range. The "normal range" for MM cells in the body is 700-1600. So that is part one of the Good News.....catching the relapse early. The reason I am explaining all of this to you is because, up until this point, I had only been on the 25 mg chemo for about 2 weeks (between being taken off and on for UTI and crappy bloodwork) and then on the 15 mg of chemo for 2 weeks, when the next blood draw was done for the "sensitive and complicated" MM part of blood testing. So I go back to the doctor this past Thursday (yep.....you can find me there every Thursday at 1:15 pm!!) and the doctor then tells me......that even NOT being on the correct chemo schedule because of the above complications AND having the dose on the chemo lowered, my MM cells came back IN THE NORMAL RANGE! So, according to the blood testing the chemo I am now on has kicked some MM butt. The plan is to stay on this regime for at least 9 months to a year, to (fingers crossed) keep my MM under control this way. SO that my friends is GOOD NEWS #2!! Like I said a few minutes ago, the best part is I am feeling good. WHEW......another glaring reminder, to be oh so VERY grateful and thankful when your body feels good. So that's basically where I am medically at the moment. All of these results are happening because the transplant replaced every single blood cell with new ones, and my body will react differently than it ever has in the past. I can't compare how I did on the 14 months of chemo before the transplant to what I am doing now, because it is a whole new ball game, differet set of rules and directions, I guess, so this is a new road I am on right now. I have no "comparisons" to judge by, or really know anything about this new me right now. Just because I may have reacted one way in the past, does not guarantee that is how my body will react now. So, I am again, asking for you to accompany me down (or up?) this NEW road I am now on. I know we can do this together.

TODAY is my "NEW BIRTHDAY" !

WOW....one year ago today was my actual Bone Marrow Transplant! They call it your "New Birthday" as literally all of your blood, which is, of course, our true lifeline, was totally replaced with brand new baby stem cells which knew (aren't our bodies truly miraculous?) exactly where to go and what to do. The stem cells can turn into anything and go anywhere once placed in the body. Even though these stem cells didn't come with their directions attached, didn't know what they where being used for when infused into my body, they took a look around and went straight to my bone marrow and began making brand new blood for me. As per the Grateful Dead......"what a long strange trip it's been". I have so many things to be thankful for in this past year (and more before that, of course), but my focus right now will be on where this last year has taken me. A year is just a measurement of time, yet it seems to become significant often throughout that one year period of time. We tend to look back, think about and make revisions to life, at that one year mark. We think in terms of the the past year on our birthdays (real and new ones!), family member birthdays, particularly our children's, we think of them on anniversaries, we think of them on New Year's Eve, and we also think of them on other such "important personal dates" that have happened in our lives, be it a graduation date, a death date, and I've even gone over "year stuff" on vacation dates etc!
A year can go by oh so very fast, as we know, especially as we grow older, and then on top of that, when you live with an incurable disease or cancer, it even adds that much more to the "thinkings" of going over the past year. Again, even though I have an incurable cancer, my overwhelming feelings of gratitude are enormous. I have a great life full of hope and optimism that I will live a long healthy life, despite this cancer. Every day you get to make that day the best you can.....even when shitty things happen, you have a choice in what way to process, see and feel those things and turn it around in your mind and remind yourself it's just a bump in a very long road you are traveling, and that at some point you will overcome. Nothing can get you down unless you give it permission to do so.
This last year has definitely had it's ups and downs for me......but mostly ups! Hey, I have cancer.....I had and lived through a bone marrow transplant, I've done well overall in this past year....so hey...I can handle any and all of the other petty little life stuff that comes my way, because it "ain't nothin" compared to what I've been through this past year. I will post soon as I have some other things to share, but gotta get goin for now. I did post some new photos taken a few days ago, so check them out. Yep.....shows you how much even hair grows in the last year! LOL

Back on the Laptop....

Spent 2 hours today with a tech guy from my broadband company and he finally figured out why I wasn't able to get online via my laptop. Something weird with my virus protection program, so we un-installed and re-installed and that did the trick. I was thinking I had a problem with my router at first, but kept getting info that it was sending a signal and my laptop was getting a signal from the router, so who knows what happenened! He said it may have occurred when I received automatic updates from the virusware program. Anyway, that's all cleared up and I'm glad because sitting at the desktop was a killer for my back and I needed the laptop to be able to sit comfortable and work on it. Now if I can just get my body on track......had the transfusion last friday and didn't have any positive results that I could feel, although I did have color return to my face. I was truly white as a ghost and looked like hell. Still not feeling right though, so gonna have him check my thyroid levels as I kinda feel like I did when I started to have thyroid problems about 5 years ago, so I want to see if maybe I need to change my medication levels with that hormone. I feel kinda shaky, low pulse, short of breath....just not feeling right. I know my body well enough to know when it's not right and it isn't right now. Hope it doesn't take long to figure this out, as it's just wearin me out. I feel like yelling....."give me a break".....I just had a horrid UTI, a blood transfusion, CBC #'s whacky from starting chemo again....I just want things to get back to my "normal" so I can focus on staying healthy despite this cancer. Sounds weird huh?

Still Not Right......

Just a quick checking in as my laptop is still down and sitting at the desk to work on the computer just doesn't cut it for me becasue of my back pain. So to update...after fighting a UTI for 3 weeks, went to doctor appt and in 2 weeks both my WBC and RBC went to near crashing levels and that's only been on chemo for 3 weeks off and on. He had me stop it for a week with the UTI stuff and then on a week and then off again because of the low blood counts. Neutropenia so bad I required a shot in the office and the RBC so low, I had to go to the hospital last friday for a 2 bag blood transfusion. Something is very wrong with me. Pulse is only running about 48 (80 is normal), am short of breath, very weak, I'm just not doing well and I want to be back to normal so bad so I can focus on battling the MM, but right now, all the fight has left me.