Monday, April 28, 2008


You know the position you get in when you're lying on your side on the floor when watching TV? The position where you prop the side of your head on your hands? Well, I did that the other day and a vicious pain shot through my head. Sharp, quick, stabbing. I sat upright immediately and felt the side of my head in the temple area. Lo and behold, if I don't feel a bump. AARRGGG!! I cried as I felt the damn thing over and over. I kinda thumped it (gently) and it sounded hollow compared to thumping the other side of my head. I didn't tell anyone. As the days go on, gee, it's getting bigger and bigger. Not so much in width, but in length, like it was crawling upward to the top of my skull. I didn't think it was a brain tumor, I figured it was just the Multiple Myeloma rearing it's ugly head.....on mine!! But you can't be sure of anything once you have Cancer. I called Dawn at Dr. Nair's office and told her what was going on. She talked to Dr, Nair and he ordered an xray of my skull and one of my cervical spine. So I go and have them done and I picked them up the next day because I had a Dr. Nair appt for the following day. I have a nasty habit of picking up my results before the doctor tells me the news. As you remember I did that with my original CT scan too. So I read the results.....pretty scary. There are "innumerable" lesions on my skull (don't numbers go to infinity? LOL) and that's exactly what I felt......a lesion on my skull. You have to remember at this point in time though, I have been off chemotherapy since February 21st because I had to be OFF chemo for a certain amount of time before having the transplant. So my body has had nothing to fight the MM since then. I've had nothing to work against the disease so it's deciding to have a field day! Since Dr, Nair also had some cervical xrays done, I had a look at what was going on in my upper spine, which I hadn't seen for awhile. I have 2 fractures at L1 and L3 and of course my original herniations at C5/6 and C6/7. What I didn't know is that I also have some spinal cord compression at C4/5. I have lesions all over my jawbone and lesions on my "girlie" area bones too. So now when I say something dumb, you can tell me I have holes in my head and that would be true! Dr. Nair assured me that the chemo treatment I will be receiving for my transplant will make these lesions eventually lessen. So......We leave for the H.Lee Mofffitt Cancer Center tomorrow. (Tuesday the 29th of April). On Wednesday morning I have to give them some blood and then we will have a meeting with the doctor. On Thursday morning, I will be having the surgery to insert the port into my left chest. It is basically a tube that is inserted into your chest so the chemo or other drugs will go directly into your bloodstream and because your heart is constantly pumping it disperses the chemo right away. They will also use this port to take blood, give me nourishment, antibiotics, anti nausea medication, pain medication and any other thing I may need. Also on Thursday we have an hour meeting with the pharmacist and an hour meeting with the dietician, then we have the Bone Marrow Transplant (BMT) nurse check my port and then another meeting with the doctor. Whew....done for the day! On Friday, Saturday and Sunday I will have to go to the hospital at 10:00 am and 4:00 pm for the nurses to check and clean my port and to receive shots of Neupogen. The Neupogen will increase my blood cell production so there will be enough for them to take out. Generally, our bone marrow cells stay in the bone marrow. But the Neupogen shots will increase their amount so much that they will have no where to go except to spill into my bloodstream. Then on Monday May 5th, I will again be checked out by the doctor and then go up to the BMT clinic to have "collection". They will remove all of the excess cells I have made over the last 4 days and actually collect them into a container. When they get enough (millions and millions) they will freeze them in a preservative until I return to Moffitt for the actual transplant. After they collect the number of cells they need we can leave. We'll (hopefully) be home the afternoon of May 6th and we get to stay home until May 11th (Happy Mother's Day to us!) when we will have to leave for Moffitt again. When we return this time it will be for the 30 + day stay......but more on that later. I'm a bit nervous, but all will be well. Send a prayer or two my way.

Simple Miracles............

After my last entry about the miracle help in getting my chemo, I just wanted to share a few more miracles that have happened to me since being diagnosed. Having the chemo covered was a big one for me, because between my insurance coverage and the "Chronic Disease Fund" I paid ZERO for my chemo. It was sent to me monthly, on time and no postage charges. To know that there are organizations out there that provide that kind of help is just overwhelming. Another miracle is that I received a phone call from my Transplant Coordinator of my insurance company. (That's not the miracle...........hee hee). A very nice woman called to tell me that she would be in charge of EVERYTHING related to my transplant and my insurance coverage and proceeded to go over what all my co-pays would be and what services they could offer to me. She told me she would keep in contact with me (which she has) and that she would be the one to approve each and every thing. I've never met this woman, but I can tell no moss grows under her feet, because everything that has been submitted to her thus far as not only been approved, but approved within 2 days! The cost of a Stem Cell Bone Marrow Transplant is close to $300,000.00!!! And, here's where the real miracle comes in......she told me that my insurance covered my stays at hotels when it was related to my cancer treatment. So far, I have been to Tampa for my initial evaluation in March of 2007. (2 days) Then in January of 2008 I went for another evaluation because the prior one had happened so long ago and they wanted to determine if I was still a transplant candidate. (2 days) Then I had to go to Moffitt for 2 days of testing (4 days all total) and tomorrow I'm leaving for a 7 day stay for my pre Bone Marrow Transplant procedures. She told me my insurance covers $70.00 a night. So I have made sure we stay in a decent hotel for all these visits and I haven't had to pay anything, AND the icing on the cake is for the actual transplant itself the Moffitt Cancer Center has arranged for me, my mom and my sister to stay in one of their 3 bedroom/2 bath apartments close to the hospital for the entire 30 or more days we will be there for the cost of.........guess........$70.00 a night!! HOO's that for divine intervention? Last, but not least............I had been up for a few hours one day about 2 weeks ago now, reading the paper and drinking a cup of coffee when the most outrageous, stabbing pain shot through me, I almost dropped to my knees. It literally took my breath away. The pain continued and continued and didn't let up. Fortunately I had my regular Dr. Nair appt that day. I've been driving on my own for awhile now, but I called Mom to see if she'd drive me because I was afraid I would lose control driving with the pain. I see Dr. Nair and he asked where the pain was and it was in my right rib area and it "traveled".....the pain wasn't always in just one spot. So he asked me to lift up my shirt so he could look on my back and side and I hear him say to mom....what are these? She says she's never seen them before. It was an ever so light trail of little red dots.......the biggest on the bottom, kinda looked like a bunch of dots all gathered together and the rest were spaced and it was like they followed a path. In like one nano second, he said it looks like shingles. We finished the rest of what we usually do and I filled my prescription on the way home. I was dreading his diagnosis because my Mom had them about 6 months ago and she was in horrid pain especially from the neurological pain you have in your nerves. She was in absolute horrible horrible pain EVERY DAY......24/7 non stop. She went through hell with them. He prescribed an anti viral, a pain patch and told me to double up on my pain meds and that should help. I look up shingles on the computer when I get home and it said that if you take the anti-viral Acyclovir within 24 hours of the outbreak it will make it a WAY milder case. My case was so mild because I started the anti-viral in less than 24 hours when it started and that was the last I heard from shingles. Never took the meds.....never had any more pain......gone...fini......nada. I think I had the shortest case of shingles ever!! The dots remained for about a week or so then they disappeared. Any more questions about miracles?

My Little Poem.......

This just popped into my head one day........................

There's some dark places inside of me
Growing and strangling like some huge weed

It's up to me to cut it down
Make it disappear, roots ripped from the ground

My thoughts will let the Light shine in
With Faith and Family, I will win

I'm trapped in a dark forest, feeling blind
Prayers and Hope will keep me fine

Every day I must battle MM
but I'm bound and determined I will Win

Written in Love and Light

Do I really have Cancer?

I'm still getting used to the idea that I really have cancer. It's sort of like getting stuck in a bad dream I need to wake up from or having a time bomb strapped to my waist and not knowing when it will go off. I have some days, that I realize there are blocks of time unaccounted for and I know that sounds weird. I think during those times I fantasize.......not that kind LOL! I see myself crossing the finishing line of a cancer walk.......I see myself at a daughter's wedding.......I see grandchildren and do things with the kids that my Mom has done with mine. And other times, I wonder what treatment will be like. Will it hurt? How long will it last? Will it work? I will say, that without a shred of doubt, that I am so thankful it is me that has to go through this and no one else in my family. I hope this is a trade off that I will be the only one and I'm "taking one for the team". When I have the cancer, I feel as if there is some sort of control I have, where, if it was another family member, I would feel so helpless. I'm kinda having weird thoughts these days, huh? I'm just "keepin it real" folks and sharing the journey as it felt for me. I'm just so concerned for the feelings that my family are having right now. In a previous entry I told you that I started chemo (on March 19, 2007 to be exact) and the first one, Thalidomide, didn't work, so I was put on a newer drug called Revlamid which did bring down my cancer cells. What I didn't mention was that when I had dropped of my prescription at the pharmacy and went to pick it up the next day and for the chemo alone my CO-PAY was $2,339.34. Are you F'ing kidding me? Are you F'ing serious? Who has that kind of money? For a co-pay?? And on top of everything else you have to jump through so many hoops to even dispense this drug because it is so harmful and I had to answer a questionnaire once a month. So I told my (wonderful) nurse Dawn that I couldn't afford chemo and she gave me a number of an organization that helps people in this position. So I gave them a call and within a week I had my chemo in my hot little hands. God's work I am sure. To me, just more proof (and I didn't really need proof, I swear) that the Universe listens to and answers prayers and believe me, it wasn't the first time I have been a recipient of a miracle. And just to let you know how BIG this actual miracle is.....the cost of the newer chemo, Revlamid that I have been on for 9 months now costs $7,657.00 a MONTH.....21 pills). How bout them drug companies huh? I've been doing alot of meditation and visualization lately (part of my missing hours I was talking about earlier) . My sister, (the BEST in the world), presented me with these awesome CD'S with guided relaxation and meditation on them. I've always meditated, but these are different, as they are geared to what I am going through and they are really really wonderful tools. Do you know that my sister even bought me this laptop that I am writing this from?? I had been wanting one for a long time, as I only had my desk top and sitting at the desk is not the most comfortable position when you have a broken back and a hole in your pelvis! She bought it for me so I could sit up in bed or on the couch and be comfortable. What a surprise for me......and how thoughtful was that? My money in the bank had started to shrink by very large amounts between co-pays on doctor visits, hospital tests and procedures and medication alone, not to mention a bunch of other stuff. She's the best in so many ways I can't even count. My daughter Lindsay came home one weekend and surprised me with an I-POD! Oh my gosh, I'm actually in the 21st century now with all my gadgets!! Linz and I had so much fun finding the music to download for my I-Pod and she did all that for me so now I can take that to Tampa and rock out while having chemo!! Chemo, the oral kind I was taking even has it's ugly side effects though. I am EXTREMELY FATIGUED........some days it so difficult to even reposition myself in bed. My bloodcounts are on a roller coaster ride.....sometimes I require injections to increase either my white blood cells or my red blood cells and even both. I've lost a bunch of weight because the chemo takes away my appetite or the food itself makes me really nauseous. I've gotten down to 98 pounds at one point. One time I became so anemic I had to go to the doctors office every day for 10 days to get an injection! It's also responsible for some hellacious (ha ha....spell check freaked at that word) constipation. But ya know guys.....all in all I think I'm doing really really really well. I thank God every day for what I have and who is in my life. As the saying goes............"It's all Good".

Telling My Girls.......

This was a day I was NOT looking forward to. I mean, think about it......... how do you tell your kids you have Cancer? I thought about it in so many ways but when you get right down to it, there really is only one way. It was the dreaded time now, because I had all the facts about Multiple Myeloma and I just needed to get this part over with. I asked my Mom to come over here too when I told the girls. I needed my "mommy" for support as I know my Mom is my Rock, just as I am their Rock. I HATE this Disease........Hate that it is making me hurt my family. It makes me soooooooo angry. You can mess with me, but don't mess with my kids! You got a fight with Mama Bear on your hands. I had asked Lindsay to come home for the weekend because she is away in Gainesville going to the University of Florida, GO GATORS! Ashley lives at home with me. So it was February 10, 2007 when I told the girls......a date etched into my brain, and probably etched into theirs too :( To back up just for a second, Mom and I had gone to Kohl's a few days earlier because I wanted to give them a gift when I told them. Something to share between them and me. I found these beautiful sterling silver necklaces that had two hearts intertwined, one of them a shiny heart and the other had diamonds around the heart. I bought each girls one. So Linz came home and I asked them to come into my room and I just straight up told them that I had undergone some testing and procedures because of all of the pain I had been having and that the doctors told me that I have a rare form of cancer, I explained what the cancer was called and why, I told them what the cancer does, and that even though it doesn't have a cure, they are hoping to make it a "manageable" cancer someday. This was when the tears started to fall. We then had a group hug and then individual hugs..........ahhhhhhhhhhhh....the fear and the love and the strength I felt in those hugs is indescribable!! I told them (which they already knew....LOL), that I'm a fighter, that I was not going to give up, that I was hopeful, and I didn't plan on going anywhere. I gave them the necklaces to represent our love for each other and that our hearts will always be together. They had questions which I answered and then we all pretty much quieted down after an hour or so, left with just the chaos that a Cancer diagnosis brings.

Sunday, April 27, 2008

Multiple Myeloma and Dr. Nair......

Today is February 5th, and I went to my first Oncology appointment. Up to this point I had only met and been treated Dr. Graham who was my Oncology Radiologist, the guy responsible for "zapping my tumors". My last radiology appt. with him will be March 1st, so it was time to meet my Oncologist and make a plan for my further treatment. His name is Dr. Santosh Nair, and I liked him right away and we seemed to have an instant rapport. It's really important for me to have a doctor I can relate to, talk to with no problem, who doesn't make me feel like I'm being rushed, a doctor who "gets" me and my sense of humor and a doctor who will listen. I felt all of those things on my very first visit and it's now over a year later and I still love my doctor!! And just a word about his Staff too.....When you go to a doctors office once a week for 13 months, well, let's just say you get to know people. My nurse Dawn is super great....She will ALWAYS get back with me that day if I have a question and the Medical Assistant who takes my blood is the most AWESOME and her name is Tonya. Dr. Nair knows how to pick 'em. :) He explained the "nature of the beast" was a rare (of course) cancer called MULTIPLE MYELOMA. It is a cancer of the blood cells found predominately in black males. do I look like a black male to you? Dr. Nair explained exactly what this cancer does to my body and outlined a treatment plan that included chemotherapy once my radiology was finished, along with coumadin to thin the blood as the chemo tends to make blood clots and complicate things. Besides the chemo which was Thalidomide (at first...but after 4 months and no decrease in cancer cells he switched me to REVLAMID which DID decrease my cancer cells). I also took dexamethsone once a week which is supposed to increase the effects of the chemo. I am very fortunate that my chemo was oral, so I didn't have to sit and do the drip drip IV thing except for once a month when I received a bone strengthener. Dr. Nair also told me that after the chemo has started to work, we keep track of the disease through bloodwork and urine testing. He said that I would stay on chemo until I hit a plateau and at that time it would time to have a Stem Cell Bone Marrow Transplant. To make the explanation of Multiple Myeloma rather short would be best to explain it as a cancer of the plasma cell and it accounts for only 1% of all cancers and there is NO CURE. The plasma cell is a component of your white blood cells and the plasma cell is important because it is part of your immune system that produces antibodies that fight infection and diseases. Having MM makes my immune system very weak so I'm able to "catch" any germs or viruses or fungus that come around very easily. My symptoms of MM were pain, recurring urinary tract infections and extreme fatigue (and I don't mean just tired!!) To explain it in depth here is the link to the Multiple Myeloma Research Foundation and they can describe all the gory details of this ugly disease.!
I'm almost caught up to "real time"..........yay

The CT Guided Biopsy.......

This entry will be short and sweet! Mom, of course, drove me to the hospital for the "procedure". I love when doctors use that term. It was a typical outpatient experience really, but they didn't want to put me out because they wanted to be able to talk to me while going through the biopsy, so I received a short acting but strong pain medication and that wonderful drug that makes you a little dreamy,versed. They could give me additional medication as needed throughout the procedure and they were continually asking "are you doing ok? or "did you feel that?". It was just fine for me actually. I was pretty nervous before I went in, but once I got in the actual room, got my drugs and the doctor explained the procedure, all was well. I was in there about an hour and they got enough of the tissue they needed to determine what kind of cancer and I had and that was that! So, now begins the dreaded waiting.......

Friday, April 25, 2008

During the Week after Diagnosis....

This one entry is about a week's worth of "pathetic little pad of paper" writings all mushed together. I'm trying as quickly at I can to get to "real time" because I want to document the Bone Marrow Transplant as it happens......but here I'm getting ahead of myself, as usual! My 1st entry within that week: Mumbo Jumbo day for me with thoughts flicking in and out of my head so a serpents tongue. I'm very confused and having an increase in pain today which could be because I spent alot of time on my feet yesterday, the stress of dealing with my primary care physician's office (do they only hire morons?), the mental part of this Cancer thing, which of course connects to the physical or it could be just the natural progression of the Cancer. I don't even know the kind of Cancer I have yet! I know a big part of the equation will be my "mental state".....a positive outlook is an absolute must, but I've thankfully always looked at the positive side things, or the lessons to be learned. Not that I haven't had my share of pissy days too, don't get me wrong, and for those I apologize and regret, but I think overall I try to be a positive person. I will focus more on that, as I want to be a role model for others as well as myself. I had to go the hospital at 8:00 am this morning and get a shot of radioactive material for a test that I have to go back for at 1:00 pm. My wonderful mom is again my chauffeur for all these appts. I hate the way I am having her life so focused on me right now, and I know it's tearing her up and makes her sad and heartbroken that I am going through this. I'm being kinda selfish about it too, because I am treasuring every moment I have with her. She is and always has been my Rock. I'm a lucky gal too because not only do I love my mom but I like her too, and for that I am so grateful. It's just so horrible that a mother has to hear this kind of news about their child, no matter how old the child is!! If I was sitting in a doctors office hearing the things that she is hearing.....and I was hearing it about one of my daughters? Well, I don't know how well I would handle it. I would hope that I would be just as loving, strong, thoughtful and caring as she is about me. This entry is a few days later: I'm really emotional tonite, being petrified about the CT guided bone marrow biopsy tomorrow. Thankfully I have been rather "phone busy" these last few days between setting up appts., changing from an HMO to a PPO (I think that''s going to be the best move for me right brilliant sister's idea) and just getting information clarified,has kept my mind occupied. Ahhhhhh...a blessing in disguise? Well, it has kept me from feeling the way I do right now! I think I'm having a mini anxiety attack because I feel like I have a literal lump in my throat and I feel like I can't breathe. I'm doing some S-L-O-W breathing and that's helping a bit. It feels a little like you're getting ready to face a firing squad or getting strapped into the electric chair......a feeling of impending doom. The larger percent of me is feeling positive, but I'm also a realist. And it's really not so much about the actual biopsy itself, it's just that the results of this biopsy will literally dictate what the rest of my life will be like and even maybe how long that life will be, depending on what kind of cancer I have. This will be the definitive test of the kind of cancer. Wow, how scary is that? and ha ha ha....I used to have this thing about elevators (claustrophobic, remember?) so now....piece a cake.....piece a cake. LOL..... I'm calming down now.....the writing is helping. There is nowhere to hide from fear, no matter where you go or what you try to do, you're stuck by yourself and your thoughts. The only thing to do is face it head on and it either turns out to be something not as scary as you thought, which makes you grow as a person, or it's even scarier than you thought, but you still have to handle it anyway, which makes you grow as a person. It's all about the lessons, it's just that some SUCK more than others!

Thursday, April 24, 2008

The Very FIRST Entry......

I am writing (actually copying) the very first entry I made in my poor handwritten pathetic pad of paper! Remember please, that this was written the DAY of my diagnosis of cancer. At this point I didn't know what kind of cancer I had or the treatments available. All I know is that I have Cancer.....and people die from Cancer. I'm sharing this with no omissions and written as is (I haven't added any comments or anything to the original) so you can see the first effects of just hearing the diagnosis of cancer was like for me. After this entry I have probably one or 2 more entries about my Oncologist and telling the kids and then I will have you up to date. So here goes:
Written on 1-22-07 at 12:30 pm
Well, I got my diagnosis of Cancer today (officially). Mom and I went to the ortho appt. to "go over" my MRI results, but I had picked up the written report myself on Friday and had read through them. Not too happy, I'm afraid. Was expecting the herniated discs (maybe 1 or 2 new ones) and of course the fracture at L-3 didn't surprise me, but when I got down to the part about the 2 suspicious neoplasms.....well it doesn't take an oncologist (a little cancer humor here.....I'm entitled) to know that that is the medical way to say Cancer. But that was just me reading my own MRI, which is a bad thing with some medical knowledge, but not being a doctor. It allows me to navigate through the terminology and make educated guesses. And they turned out right.....sorry to say. Something funny for someone who thinks she usually is right....LOL.....(insert your own story about a time I was wrong for your own pleasure). I really don't know what I'll use this for....this pitiful pad of paper. Seems like right now I'll just babble thoughts as they come to mind, but perhaps they will serve a higher purpose at some point. Right now they are just blank pages that I can fill any way I want, sorta like I saw my future. A future where I could write and see and do whatever I wanted. Well, I still do have a future actually, just one much shorter than I had imagined. I haven't let my mind go any farther then right here and right now. Don't know how long that will last. I never really did that anyway. Never was one for big planning and all, I kinda like the go with the flow process. Maybe that attitude will come in handy with all I will have to do in these coming months. Still......I don't really want to go there yet. I usually would be on the computer looking up words or phrases like "cancer of the spine" of even "oncology doctors" etc. but right now I just want to "be". Like I said my precious Mom and I got back around 11:00 am as we had to drop off about a bajillion referrals to my primary care doctor on the way home from the ortho's. She stayed for a bit and we put on our best faces for Ashley who was home. Mom left, I changed into comfy clothes and 1 1/2 hours have gone by. No urge to watch tv, read the paper, use the computer or read a book. I just want to lay here and listen. Then I saw this notebook on my wall unit in the bedroom, so I got up (and lordy was I comfortable in my jammies, my new sleep number bed and heating pad) but an almost compulsion came over me to start writing. Ask anyone, this isn't even my usual handwriting, it's almost like I can't take the time to write neat like I normally do. I just want to hurry and get it all out. Hmmm......a metaphor? Am I running out of time? Do I have less time than I think? Nothing like the word Cancer to both hurry you up and slow you down AT THE SAME TIME!! What a paradox that is! I am lying on my side, as comfortable as I can get and just listening. Before I started writing (which makes you say the words in your head as you write, LOL) I was just my heartbeat, the ceiling fan, the little refrigerator humming, Alex breathing, my stomach gurgling and birds chirping outside. I guess I just want to take some time to be quiet, because my inner self is telling me I'm going to be quite the busy gal soon. When I do allow thoughts to intrude this wonderful quiet, they move to so so many hectic things, mostly questions I have no answers to yet. My timing on when to tell my girls is a big one for me. All the other questions are more mundane like What kind of Cancer? Can it be removed? Has it metastasized all over? How long do I have to live? I need to call an attorney and make a will. I need to contact the annuity company. Who gets what? Does anybody want anything specific? I need to make out a living will. No life saving measures for me......and no Terri Shiavo type fighting over me. I need to make out one of those legal documents to appoint someone to make medical decisions. The only people I've told right now are my Mom and my Sister, Kate. Alot of people call her Kathy, but I've always called her Kate! It's funny when we have gone out with her friends and I'll say something about Kate....and they're like Who?? LOL I dreaded telling my sister. It as bad enough telling Mom but she had been to all appts. with me so she experienced the same thing as me at the same time. Except for picking up the results early and knowing I had cancer. She heard it first in the doctors office. My sister has always been and always will be my closest and dearest friend besides being my sister. We've always done things together for as long as I can remember!! We strayed a bit apart when I moved to Central Florida and we didn't see each other and talk to each other as much as we used to. But she was always there no matter when or what. One of the only people in my life I can count on NO MATTER WHAT!! I love her deeply so it killed me when I told her. Truly, a little piece of me died. I told her what was going on and she cried and then I cried because she was crying, so here we are a big fat crying mess. But as her usual, she said we will get through this together.....and I believe her. Kate said she will be my "medical person" to make decisions because she knows my wishes and said she won't feel guilty if she does have to make that decision. That's my greatest fear is that whoever I asked to be my medical decision maker would feel guilty it they had to "pull the plug" per se, but she assured me she wouldn't feel guilty because she knows she would be doing what I want. Whew.....we shouldn't have to be having to talk like this for another 30 years! Wow....I've written 5 pages already and only the tippy tip of the internal iceberg has been touched. So many thoughts.....nothing like being smacked in the face with your own mortality, but hey, you play the cards you're dealt, you go out swingin', whatever saying works for you! Mine is the Serenity Prayer and I pray I have the serenity to cope throughout this next chapter of my life.
Written on 1/22/07 at 3:10 pm
The only time I cry is when I think of my family in all this. My tears are not for myself. It makes me so very sad already for what I have put my family through in the last 2 years and now this! I so much hate to worry them. First with getting so sick in May 2005 and going to the hospital with what turned out to be an abscess on my spleen, hyperthyroidism and low potassium level from the thyroid. That led to a 12 day hospital stay and a long recovery but then I had to undergo treatment for the thyroid (radioactive iodine). Did I get the right amount of iodine and is this linked to my cancer? Well that was a scary sentence. The scary part was "my cancer". Nothing like taking full ownership of something you don't even want!! Anyways.....all the above thyroid treatment led to 8 long months of thyroid eye disease which made the swelling in my eyes to cause near blindness in my left eye besides making my face blow up like a Macy's Thanksgiving Day float. It actually took about a bit more than a year to clear up that whole mess, which was only about 4 months ago and now this!! So you can see how much I've made my family worry about me and now this is the real icing on the cake. I've been in pain 10 years now from my cervical injury....but manageable pain. Hell, we went to Las Vegas for the Christmas of 2005 and I didn't slow anyone down! I learned to live with it and tried not to complain too much. But I love my family too much to drop this nuclear bomb on them. Like I said before I had to tell Mom which broke my heart and then I told Kate which broke it even more. I can't live with this secret too much longer as doctor appts./ tests etc. will get too crazy and besides I am such a BAD liar. I find it very difficult to lie.....even lies of omission. It goes against my nature and they say if you are going to be a liar, you need a good memory so you can remember what you lied about and I have the world's worst memory, so that's a good thing!! My tailbone is hurting like a bee-otch right now, so gonna take some meds.
Written on 1/22/07 at 6:00 pm
How do you tell someone you have Cancer? The dreaded disease of all time, except maybe for AIDS. I didn't even cry today when the doctor told me.....I had an almost eerie calm inside. When we were leaving though, I was at the desk waiting for the referrals while Mom went to get the car and bring it up. The girl at the desk handed me the referrals and looked into my eyes and said "I'm so sorry for you.....I wish you the best". NOW THAT made me cry! The sorrow for a stranger (me) and the pity I saw in her eyes is what started me crying. I need to pray for strength.....for telling this to others. Boy, lots of big lessons from this coming, I can almost feel a tsunami wave moving towards me....closer and closer. I'm already being made to address the "asking for help" syndrome I suffer from!! I have always absolutely hated asking for help and prided myself on my independence. Never really cared too much for people that couldn't take care of themselves. Now, for the last 6 weeks anyway, I have had to ask for help.....even doing simple things like getting the newspaper and feeding the dogs because my flexibility "just ain't there" and it looks like it won't be returning anytime soon. I am still wearing the back brace and walking with a cane! But the asking for help thing? I hate this about myself, but I feel humiliated every time I ask for help. I feel worthless every time I ask for help. My rational mind knows that we all need help from time to time and those I depend on swear it's no bother, yet why do I hate it so? As I said before, big life lessons in store for me. Being independent is a wonderful quality until it interferes and makes you helpless. Another paradox, huh? I have a feeling it's only the beginning. I'm not ready to address telling my daughters yet so I feel like I'm lying to them. But timing is everything and I want to have all the facts, beginning to end before I tell them, and I don't even have them for me yet.

The Orthopedic Visit....

I gave myself a day to "settle down" after reading the infamous MRI report, and immediately began writing. Writing has always been a good tool for me to use when faced with the issues of life. I find it calming in many ways and it's also a good coping mechanism for me while working things out. I've always been a "list maker" anyway.....groceries or pros & cons or whatever! So I started a Journal on an old beat up pad of paper (practically yellowed from age!). The very first thing I wrote was "Life as I know it.....ended today". And how very true that is turning out to be! I will "copy" my very first written entry for you to read, so you can see where I was at first diagnosis and how far I've traveled since then.....and geez, the journey's just begun! I don't just mean the physical aspects of what's going on with me either, I also mean the mental and emotional aspects of this disease as well. I'm finding out more and more each day that Cancer is much much more than the physical. There is emotional, mental, spiritual and financial aspects to this disease as well. I will shorten this part of the journey for you after a few more entries on here, which will then bring you up to date and the entries will be in "real time". So let's get back to the Orthopedist visit and then I will write verbatim my very first entry into the World of Cancer. So here it is the dreaded day, January 22, 2007 when we go to the doctor's appointment to review the results of the MRI. My Mom came with me, she actually insisted on driving (which was a blessing) because my back was in such bad shape (more on my "ANGEL" of a Mom later) so of course with Mom driving we get there 20 minutes early (jab, jab LOL) . Ahhhhh....doctors waiting rooms......outdated magazines, sterile looking because of ugly drug ads or body parts enlarged and framed (not real body parts, mind you), uncomfortable chairs, phones constantly ringing and a clear acrylic thingie hanging on the walls with assorted pamphlets, that I swear no one takes because they were all full! they try to make it unpleasant? LOL Sorry, I digress, and believe me I've been known to do that once or twice in my life :), but chemo brain has made that aspect of my personality magnified, I'm even annoying myself!! Again...back to the doctor visit. He said he had read the results (gee, so have I, but I didn't tell him that) and the next words I have etched in my brain forever......"I will be referring you to a Radiology Oncologist for the tumors" that he sees on the scan. So.....that was that. He left the room, never to be seen or heard from again. I picked up my referral papers from the front desk and out the door I went. I didn't cry, I wasn't upset, I was just going through the motions of a doctor's appointment since I pretty much knew what he was going to tell me anyway. Plus, if you can't tell by, I didn't really care for the Orthopedic doctor. No personality and crappy bedside manner. I need a doctor that knows his stuff AND has a personality, so I'm glad our relationship was short lived. Because of the status of the tumors though, I got an appointment with the Radiology Oncologist on January 25, 2007 ,so that was a good thing. I was at the point now of still not knowing WHAT kind of cancer I had. My brain was working overtime thinking of the different kinds of cancers that would first present with back pain and infections (the pee pee, remember? LOL) I finally figured out that I couldn't figure it out , although my first guess of course, would have been bone cancer. I met Gr. Graham, the Radiology Oncologist on the 25th as scheduled and liked him right away (yay) and he meant business! After meeting with him, everything happened so fast. I had a bone scan and a CT scan the next day. And then 5 days later, February 1, 2007 I had a CT guided needle biopsy (fun to have on a boring day) and then on February 6, 2007, I had a complete bone survey and my first radiation treatment for the tumors. All in all I had 18 radiation treatments to the 2 tumors and my radiation was completed. I graduated from Radiation!! YAY!! You think I'm kidding, but I'm not and have the Graduation Certificate to prove it! It says " This certificate is awarded to Jan who has satisfied all the requirements and has successfully passed the examination on a hard table, cold room, awkward positions and cold hands. You are now entitled to announce to the world......I am finished, I am done, through and otherwise graduated with Honors I might add." It was signed and dated the 1st day of March, 2007 with the Doctor's signature! there, how many of you have this kind of degree?? The person who really deserved the "degree" though was my Mom. Every single time she drove me to the hospital for each and every test and each and every radiation treatment. Thanks Mom!

Wednesday, April 23, 2008

The Report....

My primary care physician referred me to an orthopedic doctor for my back pain on January 5, 2007 (told you I'd go as soon after the holidays as I could :). The orthopedic sent me for an MRI, but they couldn't do it until January 16th. So on the 16th, I entered the dreaded MRI machine (yes....I am claustrophobic so having this test done is an hour of torture for me!) I then called the hospital on January 18th to see if the results had been read and they said yes, so being curious and anxious about the results, I went up to the hospital to pick up the report, because my next appointment with the orthopedic doctor wasn't until January 22nd, and I wanted to see what the report said before going to the doctors. I didn't want to go that whole weekend just wondering and wondering what what was going on in my body. Now, I'm not a physician by any means, but I was a therapist for over 20 years, so I know my fair share of medical "lingo" and I thought if I could read the report I could find out if I was looking at having to have a back surgery, or I was wondering if the pain was coming from further deterioration of my already injured discs or had I perhaps herniated more discs and which ones? So with both anticipation and dread (with this much pain I knew it wasn't going to paint a pretty picture), I began to read the results. The words PLASMOCYTOMA and TUMOR and SUSPICIOUS NEOPLASM jumped off the page at me as if I had been hit with a baseball bat (we prefer softball in this family though!). Hit Hard. Really really hard. I read and reread and reread again to make sure I was reading it right. The words became a blur and my heart started racing like it was going to literally burst. The adrenaline was just rushing and rushing throughout my body. I didn't need to look up any definitions for any of those words, I knew exactly what they meant. SO.......I just sat there, breathing and breathing to calm myself down. I then folded the report and put it in my nightstand. I said nothing to no one.

Tuesday, April 22, 2008

Back to the Beginning....

Get into some comfortable "walkin shoes" because we're starting the Journey ready or not. Just a side note though..... I know cancer is in NO WAY a funny topic (just ask me, I have it!) so be it my sense of humor or just the way I tend to see things normally, you may find me saying some things I hope you won't find offensive. Believe me, I am in no way minimizing Cancer's devastating effects on the person or family, but truth be told, Cancer is a part of life and humorous things happen in there's how I make my connection and as they say I'm keepin' it real!................. I'd say it was around early October of 2006 when I was getting repeated Urinary Tract infections...(boy, do I know how to begin a journal!) your attention though didn't I? LOL... I would go to my primary care doctor, finish the entire bottle of prescribed antibiotics as instructed and then about a week or so later would get another infection, and of course with all the pleasantries involved with UTI's, right ladies? At about the same time, my lower and mid back started hurting....not crazy hurting, but enough to make you know it's there. I have a history of a cervical injury to the spine and have 2 herniated discs at C 5/6 and C 6/7 so I've had back pain over the last 12 years, and didn't really think too much of it at the time. Then it gets to be around the end of November, and I'm still fighting recurring urinary tract infections, but not as often by now, but then the back pain started to make it's real debut. And trust me....I don't cry easily and this pain would bring me to my knees beggin like a fool to make it stop. So all through the holidays, my back pain got so bad that I was wearing a back brace and walking with a cane. We had Christmas at my sisters that year too (we alternate Thanksgivings and Christmases) and my back was so painful that lying on a bed or couch just seemed to make it worse. The only place that felt halfway decent was either sitting on the couch or lying on an air mattress. All except for the night that I'm lying on the mattress and we're all watching a movie together and Sandy, my sis's 120 pound dog decided she liked it too and came over and literally just plopped herself down on it while I practically go flying off the other side. The only thing anchoring me was half her body was on mine!! I know you're probably asking by now.....and you didn't go have that back pain checked out? Well, the answer was NO because I thought between Christmas shopping, putting up our 15 foot tree, sitting and wrapping gifts, along with all kinds of other stuff that I probably herniated another disc or 2 and didn't want to get stuck in the hospital over the holidays. Plus I can't stand when people are whiners. To go to the ER wouldn't have done any good at all because I was already taking muscle relaxers and vicodin for the previous neck injuries and they wouldn't have done anything more for me. So my thinking was.....Jan, just "buck up" and get through the holidays as best you can and go to the doctors as soon as possible when the holidays are over. Keep in mind that I'm taking you back to the beginning of my journey, and I'll get you caught up to date after a few more posts.