Friday, May 29, 2009

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.

Tuesday, May 26, 2009

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.

Sunday, May 24, 2009

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.

Monday, May 18, 2009

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......

Sunday, May 17, 2009

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.

Friday, May 15, 2009

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