January 9th 1998

Well, this is my first journal entry. Shall I give you all some background? I was born in California...and lived there until I was twelve. I moved up to Washington, graduated high school, and moved back to go to college. The rain wasn't for me! I ended moving back here in 1990. Since 1990, I have worked in Florida as a horse show secretary, in Mystic, Connecticut as a cook/deckhand on an 84 foot schooner, and on a Seattle to Juneau cruise line. I have also lived in Boston for awhile. Now I've had to settle down because of this ugly disease. I would have probably made it overseas to work if I hadn't come up with cancer.

I work now in an adolescent drug and alcohol treatment facility. I cook for the kids in the inpatient program. I LOVE my job. I had a dream of opening my own bakery, and had financial backing for it, but my cancer surgery last year took care of that! The tumor was located in my right forearm, and when it was removed, the doctors had to take all the muscle and ligaments with it. I now have limited use of my right hand. My wrist is limp! I hate it.

Well, it's late, and I work tomorrow, so I guess this is all for now!

Jo

Well, today is a very special day. It is my lil' Mardi's birthday... he is a big eight years old today. I am blessed for being able to have this horse. I am the luckiest girl in the world! I love him! I have had him for seven years and seven months of his life, and he is the best!

I have lots to write, as much has happened in the last week or so. I have been in much pain for a couple of weeks now, and left work Friday for an emergency doctor's appointment. I was NOT happy with the doctor's explanation for the pain. It seems that the cancer has spread into the soft tissues of my back. I have pain like I have NEVER had before on my left side. I am not complaining, so don't think I want pity...It just scared me that I hurt so badly, that's all. As I have stated before, the docs cannot help me. The cancer is too rare and no one knows squat about it. If this kills me, I will still be a winner, as I have made soooo many friends during my illness, and I love them all. Friends make you a winner, no matter what!

About this death thing...it pisses me off bigtime! I think about what I will miss out on. I want to go back to college, and be EDUCATED. I would have never put my college aside, if I had known I would never have a chance to complete it. I want to adopt babies (and big kids too) that had no one to love them--I want to compete on my horse...I want to have my own bakery--I want to travel- I want to live a long productive life...I want to outlive my parents, my cats, and my horse...I want to be a granny. I want a lot of things, but it looks like I will have to be glad with what I do have. It's very hard to know that you are dying. Everyone says that we are all dying, but that seems like a cheap cop-out. I am living...you are living...but I know that I am dying. I can feel my body deteriorating...and to me, that is the most bizarre! It is a bunch of small things, but they all add up. I refuse to go to bed crying, so I shall end this on a high note!

I have been making valentines for all of my friends. Anyone that I can think of to give one to, I have. It is a long process, making them all, but anything to cheer my friends. It is also a vain activity on my part. I want to leave something of myself with them...so they won't forget me. As long as people have a piece of me, I will live...

Jo

Well, here I am again...I haven't got a clue who is reading this, but I will continue on...and amuse myself in the process! it is a dreary Sunday afternoon, and I had to take a break from my valentines cards. I am in the middle of making my parents' card...I tell you...I am running out of envelopes and watercolor paper! I need more! hehehee The word has spread, and I can't leave anyone out! I need more mailing addresses--without them, I cannot send cards! I am not a psycho, so there is no need to worry that I am going to stalk any of you that choose to send me an address! Tiggey is watching me as I type this...wanting some scratching from his mama! He is so spoiled, and justine is the same way. i thank God everyday for my animals...I keep going for them. I want to quit living, but I have babies that depend on me to get up in the morning! like I said, they are a huge blessing.

The pain is tolerable today, and for that I am glad. Funny how it is when you are glad for no pain... I used to piss and moan about little things, but when everything shakes down to life/death, little things are dropped by the wayside, and big things come into play. I am happy that the pain is minimal. I talked to my favorite auntie this morning. Her name is Lorraine. She married my favorite uncle, Terry, about 25 years ago, and the rest is history! I felt really guilty about telling her that the cancer has spread, like it was my fault. It is crazy, this guilt--I am causing my family and friends so much pain by being sick...and I feel like the cancer is under my control or something. I wish that I was well, and that I wasn't causing everyone pain by being so sick. I imagine that a shrink would have a name for what I am feeling, but a name doesn't cover what I am feeling. It is hard for me to write these "entries"--I don't usually tell people of my struggles for fear thatI sound like I am whining. My words don't come as freely as they usually do. I am disappointed that I sound stilted and so textbook. I am trying to let out more of my personality come through, but it is difficult, so bear with me.

Jo

WOW! This pain is disabling. I can't sit down, can't stand up, and can't lie down...I hate it. Nothing much has gone on since I last wrote, except the pain medication fiasco. my doc called at 9:00am today, and I wouldn't have been up, except for my back...it was killing me. Anyone who knows me, knows that I consider everything before 10:00 am the middle of the night! I am heading off to Palm Spring on Monday, February 2nd...and will be there for a week. I also get two days at Disneyland! The trip is compliments of my dear friends Don, Dale, And Chris. I guess it could be called on last fling before my life goes bad. I am planning on having a blast. I also get to see my Todd--his picture is in my photo album--he is a babe, and a really nice guy to boot! I have started the disability process through my work, so I will be off on a leave of absence for an indefinite period. That is enough to scare the crap out of me. I also asked for a party at work, as a goodbye thing. I am considering it a permanent goodbye. I love everyone I work with so this will be a difficult thing to attend. I was also thinking of giving my doctor the URL for my website, so he can see what is going on with me...Better run, I've been sitting for too long!

Jo

January 30,1998

It's my adopted Grammy's Birthday today! Happy 29th Birthday, Bren! Love you. i haven't been faithful in writing this, but I got blindsided by pain this week. My doc says it's because my muscles are spasming from the wonderful *sarcasm* lemon-sized tumor hanging out in my left lung. Where I am from, the lemons are pretty big...I hope this lemon is teeny! LOL I have decided to go with the chemo, even though my last chemo was evil. The chemo that my doctor is going to try is called Taxol, I think...it is made from tree bark, and hopefully it won't do the thing that my MAID chemo did to me. I am still trying out different meds for pain, and so far, no luck. I am hoping that the pain will ease so I can enjoy my time at Disneyland and Palm Springs.I am going to do Disneyland in a wheel chair. I've heard that you get great treatment. I hope so...I am a little hung up on the fact that I am fat and look reasonably healthy, so people might think that the fat girl is just lazy. I can't do Disneyland any other way, so I'll take the chair! *S* I plan on sitting outside in the sun all of the time I am in PS. I need sun...I love the sun!

I got some terrific news a few days ago. My friend Julie from HOLAS is going to come and spend time with me. She lives all the way in Dallas, Texas--what a COOL thing. I am so excited that I can hardly stand it. She volunteered herself to me so that I would have company during that horrible period of "post-chemo". That is the time after I receive the treatment (why do they call it that? Chemo ain't no ain't NO treat! hahahaha) and feel horrible. She will take care of me and my cats during that time when I am almost unable to care for myself. Isn't that AWESOME?? she will be talking to all of you in HOLAS on my computer--so she will give true to life updates on my condition. I imagine she won't candy coat the way I am feeling like I tend to do. She will also give my journal a different perspective, as I am insisting on her doing the entries while she is here. That will be cool, as I have always wanted to have people keep a journal about my cancer--the way it makes them feel- about me and about life and death. I hope that the 10-20% chance that the chemo will work is enough to reduce the size of the tumor...and in a perfect world, put me into remission. My doc, Dr. Birndorf, gave me some hugs when I saw him this last week. Isn't that sweet? He also gave me one today when I saw him at the oncology pharmacy. That sort of thing gives me a HUGE boost...He cares enough about me to try and soothe me. Awesome stuff, that.

Jo

31 January 1998

Well, I am doing a little better in the pain department. Maybe these new pills will work. I am going to try and wake up and take them during the night. I have more good news to tell--besides my trip and Julie coming to visit. Cathi is coming too--And she is bringing me a BIG surprise! I guess she is bringing me the best gift I could ever dream of getting! A hockey jersey. But this is no regular old jersey...this is my Mark Messier's jersey! Yes, Mark Messier's Canucks jersey! To all of you that don't watch hockey, I imagine that you could care less...But to me, it is the most thrilling thing that I have ever received. I am still a little shocked and amazed that this could happen to me...Anyways, Cathi is coming when I have my chemo. She is lending me support the same way Julie is. Cathi knows what a horrible time I had the first time around, and is visiting me to make the chemo more tolerable. I am slightly boggled at the way my friends have rallied around me during this time. I am ever grateful for these friends of mine, and to HOLAS for bringing us all together. I can't imagine my life without them now. A few short months ago, I was alone in my battle with cancer...now I have MANY people praying and fighting with me! I like it that way! I had a really crappy attitude then, but now I am not alone in this the way I was before. Like I said before, I like it this way. I can't wait until Cathi comes--we have such a great time talking on the computers and the telephone, that I can just imagine what it will be like when she gets here...probably one big heart-to-heart talk. I have also decided to wear the Messier jersey during the chemo...it will make me brave. I am a total wimp when it comes down to having cancer and chemotherapy...I think wearing Messier's jersey will make me brave...

I don't think I have very long left to live. My doctor has avoided answering that question numerous times, so I don't have a clue. I know that my body is deteriorating--I can feel it. I have a large tumor in my lung...and it is hurting me. How large does a tumor have to get before it kills you? I wish someone would tell me--I don't want to be surprised if I die tomorrow. I would like a little notice. My uneducated guess is a few months--6 or less. I want the chemo to work so I don't have to be terminally ill anymore. Pray that it works!

Jo

2 February 1998

I am heading out on my vacation today! I am off to Palm Springs, California for a week, and while I am down there, I am going to Disneyland for two days. Talk about exciting! I also want to go to a Mighty Ducks game...not because I like them, but because I am a hockey JUNKIE! But, as usual, finances restrict my activities...bummer! Under all of my excitement for the trip, is the fact that this vacation was given to me because I am terminally ill. That in itself is a big downer. But I am not letting that fact intrude upon my fun! I will do Disneyland with four very good friends of mine...and that is the best part! I will post some pictures of me and my friends on vacation, so all of you can see how much fun I had...I can't leave all of you out now, can I?

As I write these entries, they are getting devoured and I find myself being beeged for more...I even got asked for a preview! hahaha That made my day! I woke up at six this morning for my pain pills and couldn't go back to sleep. Gee...I wonder why that is? DUH! I'm going on a very needed vacation! I am thrilled! My mom bought me 4 new outfits yesterday--so I could REALLY have a vacation! I get new stuff to wear AND a fun time..what more could I want? Besides health, of course...

I am so distracted and excited right now I can't believe it..You would think that I would have grown out of this sort of Disneyland frenzythe second or third time I had been there...Obviously, that isn't the case! No matter how old I get, I am still a kid. I don't know how I can stand the flight down...I can't get there fast enough! I hope my daddy gives me some spending money when he drops me off at the airport! hahahaha Gotta go now and run to the pharmacy before I get ready to go! Love you all and see you next monday!

Jo

12 February 1998

I hurt today...BAD. I don't know how much longer I can take this. I wasn't built to suffer...I think death looks pretty comfortable right now. Anything to relieve this icky hurting. I have my heating pad glued to my back...it is on a nine foot extension cord so I can drag it around with me. I want to be healthy and able to do what I used to do... ride my horse, drive my car, WALK normally--I am twisted and am canted to the left now. What a fucking joke my life has become. I am a prisoner of my body...I am forced to live in a daydream world---doing things I like to do, in my mind--and then the pain even intrudes on my "perfect world dreams". It is slowly driving me crazy, and my panic attacks have returned. I have even been reduced to Perry Mason reruns...I am too sore sometimes to grab for my remote! Perry is hell to watch! LOL I start chemo next week...NASTY. I am toying with the idea of getting my head shaved today, instead of waiting until it falls out. It was terrible when it started falling out the first time...THAT sent me into hysterics. I was laughing and crying at the same time. I shall never recover from what this cancer shit has done to me..even if I get a miracle, I will still be wounded from the stuff that I have gone through. I am crying right now...and can't really take this crap anymore. See you all in HOLAS this evening...with bells on!

Love, Jo

13 February 1998

Here I am again, another day has passed and yet I live...I am having a fairly good day today, even if it is Friday the 13th. I left my apartment today, and bought myself flowers. I figured that I deserve them, as I have no valentine to buy them for me. I arranged them and they are beside my computer. Justine will probably try and chew on them, and knock over the vase. That means this old computer will short out. At this point, I could care less. I woke up this morning with only a little pain...I guess that what comes when I have only a little stress eating away at me. I threw a tantrum in HOLAS last night, and felt better for it. Now I just feel guilty. I meant what I said. I am sick of hearing the advice and the encouragement to "fight". I am getting up in the morning...that is how I fight. I get out of bed, and live that day...I function, I hurt, I hope. And that is that. Chemo is bad. Really bad. I have a one in five chance. The odds are bad, but that I signed up for the hateful crap so I wouldn't be a LOSER even if I die. That I willingly signed up for chemo says enough. I don't want advice, or encouragement. I want love and a supportive group of friends...not a whole bunch of moms telling me what to do, and expecting me to help them deal with MY illness. What the hell is that? I am the one grieving for the things I've lost...All of my mommies and daddies have plenty of time to miss me after I am gone. Everyone else is going to be alive after I am dead at the rate I am going...rejoice in that...live for me. And let's just get on living---forget that I am dying and LIVE with me and for me....before and after.

I LOVE and cherish each of my friends in HOLAS, and the tantrum I threw was out of fear and anger at my situation, not because I hate anyone. I am scared to death and in pain..give me a break and a rest. Please forgive for being a brat. I have no excuse for my behavior. My tirade won't be complete without going into the fear part...I have said in desperation "please call me..." and that is because I need to be talked through what I call "The Scaries" or the "Spookies". I get into this "place" that is filled with this unreal FEAR, and need to talk to someone to be brought back into my reality. I got a call from Brenda, Julie, Jeff, and Cathi yesterday...It was a spooky day. I got all call today from Mele...and she helped chase those nasty spookies away from me. Today might be better for me. But I don't know...night hasn't fallen yet. I am frightened of getting the chemo, it hurts and I hate it. I think ol' Saddam needs the chemo that I had to shape him up! LOL I was soooo sick during that treatment that I tried to kill myself. Chemo for Jo is a death sentence. Now does anyone understand how I feel? I hope so...I am also scared of what the cancer will reduce me to. Most likely an infantile parody of my former vital, alive self. I am scared of the pain...I am just PLAIN scared! I am not brave...just chicken! LOL

I also realize that I am not the only person in the world that is sick like I am, but I am alone in my disease. I am the only one that feels the pain, the fear, and the loneliness. I AM ALONE. That is what scares me the most.

Jo

23 February 1998

Here I am again. I was laid low for awhile due to that nasty chemo, but hopefully that is behind me for a couple of weeks! I wasn't a very good patient during the time before and after I recieved it. I got myself all hysterical because I was frightened. I almost walked out of the clinic. I am not embarrassed by my fit, because now my mom and doc know for sure how I feel about it! LOL It is 6:23am and all sane people are asleep now. I am not sleeping well now, but I could be wide awake because I fell asleep at 9:30 last night! I have this irrational fear about sleeping in my bed now. I haven't slept a full night in a bed since last week. Go figure. I sleep on the couch I did the same thing last chemo, and it must have something to do with that I can hear all the healthy people going to work...I sit ensconsed, tucked away in my apartment...with my vilest enemy. If I think of the mental picture that sentence makes, I will go crazy. I see myself typing on my computer with the ugliest, scariest demon kicked back on my loveseat. Me and my mind... the stuff I can think of...I give myself nightmares!

Jo

24 February 1998

I just finished my breakfast...it was a half of a cheese sandwich from Subway. I ate the other half for dinner last night. It was good, with lots of pickles and olives on it. Chemo wipes out my taster, so the spicy overpowering stuff is good. Now I have the hiccups. I hate them. I get them after I eat now. They hurt. Hey! Who am I kidding? Everything hurts! LOL I am getting lots of "hits" on my page now. I love it--it makes me less alone in this. I just had to get up and move around. I have to do that more now, as I get stabbing pains in my back if I sit too long...I wonder if that is what Missy felt when she was unable to sit at her computer too. It is comforting somehow to know that I am not the first one to have these problems, even though Missy has passed on. I think of all the individuals that have done this before me and wonder if the paths they walked were to make my walk a little easier. Will my battle with cancer give comfort to anyone else doing the same thing? I need my friend Joel to help me with this one! LOL Joel, are you reading this? You had better be and I will expect a full explanation soon! hahahahaha

Jo