Tuesday, July 29, 2008

Still Here.....

Sorry I haven't written lately, I''ve just been so busy lately with making beads, and then stringing them into necklaces, keychains and other fun stuff, that the day is gone before I know it! I also wasn't here over the weekend as we made a quick trip to West Palm for Lindsay's Graduation Party thrown by her Dad, Kevin. More details on the party later, but I do want to make another trip down south to get together with some High School friends I haven't seen in awhile and to also get together with some other people I saw at the Party. And of course to visit my sissie and family too!!! Now that I have the go-ahead to be "normal"......watch out is all I'm sayin!! I still feel pretty dang good, just some fatigue but not as bad as when I was on chemo. It's hard to believe that just 7 short weeks ago I was in the Moffitt Cancer Hospital for a Bone Marrow Transplant, and not even 2 months later I feel so good!! This Thursday will be my 2 month mark and I see Dr. Nair for bloodwork so we'll see how the numbers look then. I'll keep you posted. This is short and sweet, I know, but I promise to give you all the details in a few days, as I am waiting for a new torch head to arrive, so making beads won't take up so much time, at least for the next 3 days or so. Stay tuned!! Oh yeah, be sure to look at the Party Photos I've just posted :)

Monday, July 21, 2008

Tired and Bowling..............

The dogs woke me up at 6:15 am barking their fool heads off. I'm the kind of person, sorry to say, that once I come out of that certain depth of sleep there is NO WAY I'm going back to sleep. I hate that. I've always been that way and probably always will be. I've always been so jealous of people that can sleep through anything. And no matter what.......once I'm up , I'm up and I also have NEVER been able to take a nap when it's daylight. I have tried over the years, believe me, because some days I have been so dog ass tired and yet could never fall asleep during the day. So the dogs pissed me off when I looked at the clock and saw the time.......dang.....the Today Show isn't even on yet! So I just started my normal routine of letting them out, starting the coffee and getting the newspaper. The problem is it's only 2:00 pm right now and I feel like it's at least 6:00 pm!! The little shits. Needless to say, I'm pretty tired right now, but nothing to do about it except go to bed early tonite, which I totally plan on doing. Lindsay left yesterday to go back to Gainesville, after being home for the weekend. Her and Anthony just hung out on Friday night and on Saturday afternoon we all went up to the bowling alley to bowl a few games with all his family, so I finally got to meet all the them. We had a good time and I attempted to bowl 1 game. What I mean by attempt was I could not bend at the waist like you should do when bowling when you deliver the ball and I guess it's because my lower back is so messed up. I bowled the worst game of my life too, as I used to be a damn good bowler but alas......no more :( Not that I was ever in a league or anything, it was just that I would normally bowl at least a 150 or so. My highest game ever was a 260. AHHHH.....The glory days LOL

Sunday, July 20, 2008

A Surreal Moment..........

When I was at Dr. Nair's the other day and went back to the chemo room for my bone strengthening IV, I had a very surreal 7 minutes and 25 seconds. How do I know it was 7 minutes and 25 seconds, you ask? Well, I'm sitting there with my IPOD on, and it's turned up to the maximum volume, so the music is just my whole world just then. Then on comes Pink Floyd's "Comfortably Numb". Now, now.....it was not a flashback!! The words are just so awesome and the voices and here I was in just a very not normal place and the 2 things combined to make the next 7 minutes and 25 seconds surreal. I looked around the room and I'm surrounded by 11 other people sitting in the exact same tan rocker/recliners with tall IV poles by their sides with clear tubing attached to people's arms or chests with various colors of liquid dripping into their veins. I slowly kinda stared at each and every persons face and they all had different looks on their faces. Some people were tired, some bored, some reading books, some watching TV, some sleeping, some looked sick, and another woman looked as if she had been crying very hard before she came in to get hooked up. This lasted the length of the song.... for 7 minutes and 25 seconds. I told my sister this story and then she asked me......."What were you feeling when this happened?" I had to think awhile before I had an answer, because there were no feelings at all which is very odd. I felt as if I was not a part of this scene and that I was an observer only. That I was meant to just observe and file it away. I know it just had to be a combination of THAT particular song in THAT particular place at THAT particular time, because the next song that came on was Lynrd Skynrd's "What's your Name?" and I immediately snapped out of it. One of my many surreal cancer moments!! LOL

Thursday, July 17, 2008

Check Up at 5 Weeks Home.....

Today is Thursday July 17th and I've been home from Moffitt 5 weeks today, and feeling great. I had an appointment with my local oncologist, Dr. Nair, today as well as starting my once a month treatment of IV Zometa which I need for bone strengthening, since Multiple Myeloma attacks the bone. So my favorite gal, Tonya, called me in for the usual temperature taking,blood pressure taking and weight....which by the way is still at 96 pounds, even after eating a humongous ice cream sundae with fudge sauce and whipped cream everyday as my snack!! Then I go into a room and see the doctor and then on to the IV room for my infusion which takes about an hour. I have such great news from my doctor today. While talking how things were going in general, he then gave me a copy of my bloodwork which is just AMAZING!! He told me that in all his years of working with MM patients, that my bloodwork has recovered faster than anyone he can remember. He said usually that the blood numbers will go up and down and eventually stabilize. My white blood cells have been in the normal range since I've been home, my red cells are a little low, but nothing to be crazy about and the last blood cells to engraft in my marrow will be my platelets. Well the normal # for platelets to be is 140 and today mine were 138!! Woo-Wee. He told me that I am right now, in the place they would expect me to be at the 6 month mark!! What great news is that??? I knew I was feeling good, and now the numbers prove it. Yee-Haa. I am one happy camper. I also went out last nite to meet my friend Bobbie for an early dinner at Chili's and had a great time catching up with her. Bobbie is such a wonderful, warm and caring person and I enjoy so much our time together. Melissa, her daughter stopped by to see me too and it was great seeing her. Liss and Linz have played softball together for a bajillion years! Just wanted to share my great news with everyone. Blessings to all.

Tuesday, July 15, 2008

Beads Beads and More Beads

Oh my gosh....I am having sooooo much fun! I got the glass I ordered, delivered by UPS right on schedule yesterday afternoon. So far I've made about 15 beads and even experimented with one that looks like a tropical fish! It will take alot of practice to get really good, but I think I'm doing pretty good for this just being like the 5th time I've tried. I ordered lots of opaque glass, transparent glass and a few tools that will help with shaping so I'm pretty psyched about it. I could sit there all day and make tons of beads but I'm thinking I had better do a bit of planning, and coordinate some colors to make a necklace that doesn't look like someone just threw a bunch of melted glass together!! I want to make a necklace for Kate, that's my first order of business, and then I was thinking of making one for all my girls.....Ashley, Linz and Sarah. When I get really good I'm going to attempt to supplement my income with a small jewelry business on the side, but that will be a while yet. I'll take some photos when I have a camera that actually works! Ya'll take care now, ya heah!

Monday, July 14, 2008

Just Normal Stuff.....

No profound thoughts from me today. My brain doesn't want to think about cancer right now :)
I've been home from Moffitt 4 weeks now and feeling great. I haven't felt this good in over a year now since there is no poisonous chemo coursing throughout my body. I have lots more energy these days, I'd say I'm running at 80% capacity!! Mom and I went to our local flea market a few Wednesdays ago, and just looked around and had fun until it got too hot for words. Was pooped when I got home, but it felt really good to walk around in the heat and "get out there" and just look at cool stuff. I'm such a pack rat and junk fanatic that I can have fun at any flea market!! I even bought a set of 400 count sheets for $20....can't beat that. I've been making beads which is so much fun, but I only had about 10 glass rods in my beginner kit, so I've ordered some more which should be here sometime today. I have lots of creative ideas and then will be making some really cool and unique jewelry with my hand made beads. I'll post some photos when I get the shitty ole digital camera out. I really need a new one, as mine's one of the first that came out and it weighs a ton and the batteries that have crapped out cost almost as much as a new camera, so I need to get a new one that takes good close up photos. Ebay here I come! I love being creative and it's so calming and healing for me, and I'm thankful the nurse at Moffitt introduced me to this art form. I've got an early dinner date with my friend Bobbie on Wednesday which I'm looking forward to. We have tons to catch up on and a few margaritas to drink down at Chili's. I always have a good time with Bobbie. Linz came home this weekend but I didn't see her for too long as her boyfriend Anthony is home from Vegas for a few weeks so they had a few family get togethers with his parents and brothers over the weekend and then she had to head back to Gainesville to study for some tests coming up. She'll be home this coming weekend though so we'll spend more time together then. She's a pretty busy gal lately as she graduates on August 9th and then moves home for a few weeks and then out to Vegas to live. More on that later. All in all, things are going great these days and I'm thankful.

Saturday, July 12, 2008

A Sense of Belonging.......

When I was at the Moffitt Cancer Center, I was surrounded by all sorts of people that were in various stages of treatment for cancer. You'd look into peoples faces and see the underlying sadness even though you could tell an effort was being made, in some cases anyway, to put a smile on their faces. I didn't feel out of place there, as I was one of "them". Unless you were in remission or a visitor or family member, you could pick "us" out of the crowd. Our skin color was different in some cases, we were "too thin" in some cases and we were either bald or in some stage of hair re-growth. The men either wore baseball caps or reveled in their badness, while the women made an attempt to wear our baldness with a hat or scarf and sometimes a wig. Some women didn't wear a thing. Good for them!! We came in all shapes and sizes and ages.......I saw people from their teens through 80's plus in some cases. I felt I was a member of an exclusive club being there, I was accepted there. Don't take this wrong, it's not that I feel like I don't belong "out" here at all, it's just a feeling you get when you have cancer and you're in a place surrounded by others that have cancer. It's an unspoken secret that we're all in this together. We are all fighting the good fight. We know how the other is feeling. That's what gives you a sense of belonging. I wasn't stared at there and I wasn't different there. When you're out in the real world, you do get some looks and even stares because of your baldness, lack of weight or a combination of both. Not a bad thing, it's just like you feel you're wearing a glaring neon sign that says, "I have cancer". I'll admit that I was always curious when I saw people like me. Of course you don't blatantly stare, because it's obvious they are fighting cancer. It's not too too bad for the guys I don't think, because lots of men shave their heads these days, but for a woman?? Well it's obvious they have cancer and have been through chemo. No matter what kind of headwear you choose, you can tell a person is bald underneath that hat or scarf! I'm not embarrassed by the way I look right now........I haven't ever in my life embarrassed easily......just ask anyone that knows me LOL I guess the point of my rambling is that until it happens to you, and you go out into the "outside" world, you don't know how it feels, and that's why it was so different at Moffitt. We're kind of like reminders to others that cancer is a part of life and we serve as sometimes unwelcome reminders to people because EVERYONE has either had cancer and in remission, is currently fighting cancer, or they know someone who has or did have or died from cancer. Although there may have been alot of sad people at Moffitt, it was also more of a place of Hope and and togetherness.

Friday, July 11, 2008

Identity Crisis?

When you have cancer, you tend to focus on the "physical" and "medical" aspects of it. It actually "makes" you take this focus in some ways because of all the continual doctor visits, blood testing, MRI's, CT scans and all kinds of other tests you are put through. And then it's not just the tests.......you are also made to live with a sort of constant low grade anxiety because you then have to wait for the results of these tests. So the next thing is...... What will this test show? Is the cancer increasing? or "I'm having (name something) this symptom today".....does that mean anything? There's never a day that you don't think about it, which is so not like me at all. I'm a "Serenity Prayer" kind of person, but no matter....it's kinda like a mosquito buzzing around your head, making you tired of swatting at it and it just won't stop bugging you. It doesn't interfere in my daily life per se, as in preventing me from doing things or immobilizing me etc...... it's just an "always there" kind of thing. I wonder if I'll ever be used to it?? That brings me to the thought that once you have a diagnosis of cancer, it becomes a part of who you are. It forces itself to become a part of your identity whether you want it to or not. Don't get me wrong....it doesn't define who you are, but it does require a re-organization of how you see yourself, both internally and externally. Like an "identity crisis" that shakes up who you think you are. When you first receive the diagnosis you and probably everyone else tends to think you will die soon. That's what a diagnosis of cancer used to mean back in the day. Thankfully so many strides have been made in the cancer field, that they are trying to look at cancer as a chronic disease (like diabetes or arthritis).....something you will always have but won't necessarily kill you. I like to think of it in that way!!! So when you wake up every day, and you're still alive, you realize that cancer is just another part of your life, always will be and it's just as simple as that. You learn to live with it, just like anything else. Sure, it will place some limitations on you , but how many things in life don't? I guess what I'm saying is I'm beginning to realize that the only way to "beat" cancer is to live your life to the fullest everyday, accept that it is part of who you are, and move on. The future doesn't have to stop because you have cancer. I remember when I was first diagnosed, and talking about it, some would say "don't you ever ask why me?"......and you know, I never ever have because I already knew the answer. The answer: Why NOT me? LOL It's not sad that I have cancer. I feel that it is a time to rejoice that my life was not lost, to focus on how lucky I am to have had so many people care and that each tomorrow holds hope.

Found this Poem

I found this poem on one of the websites I look at now and then so thought I'd share it with you.....
Cancer is so Limited
It cannot Cripple Love
It cannot Shatter Hope
It cannot Erode Faith
It cannot Destroy Peace
It cannot Silence Courage
It cannot Suppress Memories
It cannot Kill Friendships
It cannot Erode the Spirit
It cannot Conquer the Soul

Tuesday, July 8, 2008

Special Thank You's and Shout Outs......

Just like they say "It takes a Village to raise a Child", it also takes many many people to assist in the recovery of a person with Cancer. I first want to thank......and thank is such a pitiful little word.......when it comes to talking about my Mom and Kate and Lindsay and the multitude of ways they contributed to my BMT process. I truly could not have done it without them. They were the major contributors to my healing process, taking care of the endless day to day duties in the life of a Transplant patient. I also want to thank all of the nameless and faceless folks who prayed for me, people I will never know or meet who were kind enough to pray for me and my recovery. You know who you are, and I thank you so very much for "paying it forward" on my behalf. Then there are those people I will mention by name as they also played a role in my recovery, although they may not think they did. First of all, my wonderful ex-husband Kevin was a true and loyal supporter of mine. Kevin came to Tampa to share in my BMT experience from the first weekend there before I went in for my first chemo treatment until I was discharged from Moffitt. He came to Tampa EVERY weekend to do whatever he could (ie. setting up the DVD player and putting in a hand held shower unit for me) as well as just be there for me physically and emotionally. We would play scrabble with Lindsay, visit and laugh with the family and just generally talk and be together. We're talking an almost 5 hour drive from where he lives to Tampa, so this is a pretty big deal to do this every Friday thru Sunday for 6 weeks and he also came up to my house after I was discharged for the first 2 weekends after I was home. During this time too, he built the dog "corral" for me (I think the dogs call it Attica) and also played a big part as a parent to our daughters, helping to alleviate some of their fears about what I was going through in Tampa. He continues to play a huge part of all our lives and for this I am truly grateful. Kevin, you will never really know how much I appreciate all you have you have done for me all this time. I also mentioned in a past blog how I became interested in glass bead making and wanted to start this new art form when I got home. Well Kevin, on one of his weekend visits to me here at home brought me the most gorgeous hard cover beading books to read and learn from. I mean wonderful wonderful books about his craft. Not only did I appreciate the books themselves, but to know Kevin went into a beading/jewelry (girlie) store to buy them for me.....well, if you know my husband you'll appreciate the visual that brings! Thanks again for all you have done. I also want to thank my daughter Ashley for "holding down the fort" at home while I was gone this entire time. Ashley called at least twice a day to check on me and to talk to Kate or Mom about how I was doing. She thinks she did not contribute much to me being in Tampa because she was not physically there, but I truly needed her at home to make sure all was well and to take care of both the house and the dogs. To have that piece of mind and not have to worry WAS taking care of me. Thanks for all you did, Ashley. Another special shout out is to my niece Sarah, who came up to Tampa twice to see me. She took the time to make the long drive to see her Aunt Jan, and bring only Sarah's warmth and special sense of humor. She also bought me a gorgeous dress so I would feel like a "pretty" bald woman and gave me an awesome pedicure which is just now needing to be done!! I love you Baby Sawah. Others on my list for shout outs is Kathy my ex-sister in law who called several times while we were in Tampa to check on me and who was also clearing her schedule for when I came home to "babysit" me for 2 weeks, which it turns out I didn't need, but she would have been there doing everything for me in a heartbeat, and has also made the time to visit me since I've been home. I also want to thank Pepper, my niece for sending my many cards over the last few months that always cheered me up and left me feeling loved. I want to thank Patty and Tom, my relatives from Wichita who sent us all gifts to keep us occupied. They sent us all Starbucks gift cards (yes.....Moffitt has a Starbucks inside the building) and a bunch of just "fun" stuff to play with like chiming meditation balls (which I love using), some lip balm (which was needed), a how to book on palm reading and a how to belly dance book with the finger clackers!! We laughed so hard and had fun with all these things. How creative a "care package" was that?? Thanks Tom and Patty for all your love, prayers and thoughtfulness you have shown throughout this ordeal. They even made a trip down to Florida to see me before I went in for my BMT. I also want to thank Anthony, Lindsay's boyfriend who lives in Las Vegas, for sending a beautiful touching and thoughtful card along with the promise of tickets to see the Cirque de Soliel show with the Beatles soundtrack that I have been wanting to see since it started just over a year or so ago. When I get the clearance to travel, I'll take you up on it. Vegas is one of my favorite places ever!! Now I want to thank one of my oldest and dearest friends Wendy for a beautiful card with her special words of comfort and for sending me the book "Eat,Pray,Love" which I hear is wonderful. And lastly, I want to thank all of my friends who have emailed me blessings and special thoughts and prayers since this journey has begun. Please know that all of you have contributed to my healing, and for friends I had lost track of like Jan and Colleen.....well....I am so glad to have reconnected and look forward to seeing you in the near future......I am thankful for each and every one of you.

Sunday, July 6, 2008

Angels Angels Everywhere........

About 3 weeks before I left for Tampa to have my Bone Marrow Transplant, my daughter had come home from college for the weekend (UF.....Go Gators!) and I asked her if she wanted to go up to a local park with me that evening, because I had read in the paper that they were hosting a "Relay for Life" sponsored by the American Cancer Society. I have never been involved in anything like that before and wanted to somehow be a part of it. I didn't know if you had to sign up.....didn't know what it would be like.....knew nothing about it really, but she told me "sure...let's go". I put on my black T-shirt that says "CANCER SUCKS" in big white block letters. My family hates when I wear that T-shirt but what a more appropriate place to wear it!! We agreed we'd just stay for a little while to see what's up and then go grab a bite to eat afterwards. Also at this time, and I really hadn't said to much to anyone, I was starting to get a bit nervous about my upcoming transplant. Before, it was always in the future but now I had a date and time for it and now it is for real. I was leaving in 5 days for my BMT pre-transplant testing in Tampa. Kind of a scary time for me right then. So Lindsay and I drive up to the park and drove around trying to find a parking space and in the distance we see some kids playing on the playground and a "bouncy house" set up. We parked and walked up past the playground and came to the park's entrance and we had just walked in when Linz saw a girl she knew from high school. We talked with her for a little bit and then just started to walk around and see what's what. There were tents pitched everywhere, as we found out that the "Relay for Life" was a 24 hour event so people had set up tents and tables all over......sort of like you see at a Pop Festival or the infield of the Races at Daytona!! There was a track laid out so people could walk in a large circle and the track was made out of luminaries and written on them were "In Honor Of" and a person's name. If the person was alive, it just had their name on it and if they had died they had a name and date. Lindsay and I found ourselves holding hands and walking along the track.....just talking and watching. It dawned on us then, that there was primarily 2 predominant color T-shirts people were wearing. The dark Purple shirts with white lettering had "Relay for Life" 2008 and the words "Celebrate", "Remember" and "Fight Back". On the back of the shirts in large block letters the T-shirts said "SURVIVOR". Then there were white T-shirts identical to the purple ones and on their back it said "SUPPORTER". Wow.........we then realized the girl that Linz knew from High School was wearing a Purple shirt. She had had cancer in High School ,Lindsay then tells me. There were also booths set up around the track, as well as a buffet table set up and a stage for entertainment too. Lindsay and I stopped to watch a karate school's students put on their routine and a little girl sing. We went up to the first booth to ask if there was a sign in sheet and a woman asked me if I was a supporter or survivor. Gee......I don't know....what EXACTLY am I?? I asked her if there were any other categories and then told her I presently have cancer and am going for a bone marrow transplant in 2 weeks and was pulling for the "survivor" name!! She then gave me the warmest bear hug and held me for at least a minute and then let go and said......"You look fabulous for going in a few weeks......I know that you are going to be just fine." That hug from a total stranger felt good and it was then I realized I was hugging a "sister" .......a cancer survivor.....something I want to be. She told me to find her before we left because she wanted to give me one of the Relay PURPLE T-shirts because if you currently have cancer and you're here to tell about it you are considered a SURVIVOR! Yay......I finally knew what to call myself, yet I felt it was cheating just a little since I hadn't gone through my BMT yet. Linz and I were getting hungry after another lap around the track, so we went to find the lady who told me she wanted me to have a Survivor T-shirt. She was talking with a 30 ish guy sitting at a picnic table. She saw me walking over so she excused herself to go get me T-shirt and we started talking to the guy she was sitting with. He also was wearing purple and we started to talk about ourselves and a bit about our journeys. He also told me I looked wonderful for going in for a transplant and he said that he had a feeling I would do just great and pull through really well. Wow....what an encouraging club I inadvertently joined by having Cancer!! Little did I know that when I was feeling scared that God would send these 2 angels in disguise to help me feel more confidant about my upcoming transplant...talk about making me better! I got my T-shirt, thanked my new cancer friends, and Linz and I left for IHOP to eat .....my choice.....I was in the mood for one of those thin crepe thingies they have! On the way there, Lindsay and I talked about how God and the Universe works in a way that you may not always get what you want, but you get what you need (thanks Rolling Stones) when you need it. We talked about Angels and how they are sent to us to bolster our courage, send us a message, or signs that the Universe is in our court. We had a great conversation about life and angels and the Universe. We then get to IHOP and the waitress who was seating us says to me......"I like your T-shirt".......I laughed and said "Thanks.......my daughter and I were just walking in the "Relay for Life" sponsored by the American Cancer Society". She then says, "I'm a Survivor" and I then asked her what kind of cancer she had and she told me uterine and that she has been in remission for over 8 years now. I told her that was awesome and that I was going in for a bone marrow transplant in a few weeks and the waitress leaned all the way over into our booth and gave me the biggest longest hug I think I've ever had!!! She also told me I looked great and that I would be just fine after my transplant and to keep the faith. Lindsay and I just looked at each other astounded!! We knew we had already experienced 2 angels today....... and we had talked about it all the way to the restaurant....and now this? WOW........Thank you God for allowing me to share a wonderful evening and conversation with my daughter and to allow us to see together, how wonderful your Universe is and how clearly and loudly you speak to us if we are open to your the message. I came home with no worries about my BMT, because 3 Angels came into my life today.

Saturday, July 5, 2008

To Tell or Not?.......... and Prayer

When I was first diagnosed with cancer, like any cancer patient, you wonder and think about 1) should I keep this to myself for awhile? or 2) do I tell family and friends? For me, I had no choice but to tell my mom because at the time of my diagnosis, I was in such bad shape because of the fractures in my spine and the hole that had literally been eaten away in my pelvis, that she was the person who drove me to all of my medical appts. and went in to see the doctors with me. At the time, I was in no shape to drive because I was in alot of pain, wearing a back brace and walking with a cane. I did however, have the option of telling other family members and friends though. For me to keep this diagnosis to myself though, just wasn't my personality though. Don't get me wrong...... After the timing of telling my daughters, the rest of my extended family and friends weren't told until I had been diagnosed 3+ months, all except of course for my sister Kate. There was no way I could keep it from her, so I told her even before I knew what kind of cancer it was. Why do some people shout their diagnosis from the rooftops, others don't tell a soul for a very long time and others fall somewhere in between? I'm not sure of the answer really, does it have to do with your readiness to face your diagnosis? Does it have to do with your basic personality traits? Does it have to do with how people will look at you now,or what they'll be thinking? For me, I believe that I needed to know that firstly, I had people in my corner so to speak......that I had my family for support and to listen and be there for me. All I really needed at first was my mom and sister.....and then they gave me the strength to tell my daughters when I had all the facts, which then in turn, when I was ready to share the news with others in my family and friends, I had the support of the people most important to me. It made it easier then, to share my news with the world, that I had cancer, but hey.....don't feel sorry for me because I have plans to beat this thing. As it turns out, the best thing WAS to "tell the whole world" though because when I did, I was put on so many prayer chains and prayed for by name in so many prayer circles that I really had all my bases covered!! People who did not even know me were personally praying for me, and when I was told that by so many relatives and friends, it really lightened my load. I just pictured God hearing all these prayers coming in for me and saying....sheesh...all right already.....I'm really really getting tired of hearing this woman's name over and over everyday, so I'll make her well just to get you guys off my back!!! LOL......God does have a sense of humor too!

First Day at Home.....

Today's Friday the 13th (of June).....and well, this is so NOT an unlucky day for me!! Bring on the black cats and all the ladders you can for me to walk under and any old mirrors you want broken, because today is MY lucky day, no matter what "they" say. LOL....... I just survived a Bone Marrow Transplant and I'm feeling damn good too. The most surprising thing about coming home is that we all were told (at the beginning of this transplant ordeal and in all the books we had read) that I would be in no shape to take care of myself when I first got home. So we all pictured me this pathetic person who needed assistance walking to and from the bathroom, who needed help with taking a shower, someone who would need all her food prepared for her etc etc....the list was endless. I feel better now than I have for the last 1 1/2 years being on chemo! I may be bald and skinny but I feel good. The hair will grow back and let's bet a year from now I'll be pissin and moanin about having to lose 10 pounds!! That would be a great scenario wouldn't it? I called Dr. Nair's office today to schedule my first appointment with my regular oncologist, as I do have to be followed very closely for awhile. I've been going to him every single week for over a year now, but I don't know what the schedule will be like post transplant......one of the things we'll talk about on Thurs. June19th when I go to see him I guess. I do know I'll have to go back on my IV Zometa infusion which takes about an hour once a month in the Chemo room. It's an IV drip to strengthen bones but I had to stop it for 4 months before the transplant, as I needed some dental work done and you should not have any dental work while on Zometa......and they will NOT do a BMT unless your mouth has gotten a total A-OK. I'm still staring at the "Tampa" boxes and suitcases today.....but....they'll get unpacked when they get unpacked!! For today, I'm going to focus on gathering alot of my medical receipts and stuff to submit for reimbursement from my insurance company as money is getting very very tight, my friends. Cancer is a very expensive hobby....and not even one I enjoy, because I sure could come up with many many more pastimes to spend my money on and that I would enjoy!! I need to get this paperwork organized so I'll get the money paid back to me from the insurance company, so I in turn can pay some bills. Hmmmmmmmm.......any ideas for a Jan's Journey Fundraiser? Only one I came up with was standing at a busy intersection with a bucket and my bald head :)

Thursday, July 3, 2008

Home at Last......

Well......."the Eagle has Landed". We got home at just about noon like I thought, but you never know when you travel I-4, as you all well know. I know it takes 2 hours to drive from Tampa to home, but you can never count on it, that's for sure. Well I guess the Interstate Gods must have known how anxious I was, so they cooperated with the traffic flow and we didn't run into any unforeseen traffic craziness that is more the norm than not these days. Remember I told you how much was packed into the car? Well now it was time to get it all out and put into either my room or wherever else it may go and I felt bad because my instructions from having my central line pulled (was it just a few hours ago??) included NO LIFTING, CARRYING or BENDING OVER AT THE WAIST for 4 days, so I was NO HELP in bringing in anything. We had sooo much stuff too so I felt bad that I couldn't carry anything more than my pillows and blankets into the house. Between Mom, Ashley and Greg though and a bajillion trips to and from the car, it eventually all made it into the house. Mom stayed and helped put some of the refrigerator stuff away and then she headed home. Bless her heart......she was anxious to get home too!! The dogs were all going bat-shit, especially Alex, they were soooo happy to see me they couldn't stand it. They really couldn't understand why I would only talk to them and wasn't picking them up to hug and cuddle, but they got used to it after awhile. While I was in Tampa, Kevin had come up to my home and built this gorgeous fenced area so the dogs could stay in there. I know "fenced area" inside the house sounds weird, but it looks very architectural and is built to enclose the TV room off from the rest of the house but the dogs can see through it and know what's going on. I'll take a picture of it and post it here because it's hard to explain but it looks very very nice and I plan on keeping it there for a very long time!! It's a way for the dogs to see what's going on but not get underfoot. And of course, Alex doesn't go in there, because he's special and he knows it :)
So things eventually settled down and Ash, Greg and I were talking in the kitchen and I said to them...ok, guys, let's get the "unveiling" over with because I won't be wearing a scarf around the house, so I took my scarf off so they could see my baldness up close and personal!! Ashley was cool with it for a few reasons.......Lindsay had taken a photo of me in Tampa on her cell phone and sent it to Ash so she said she had been looking at it everyday, so seeing me with no hair in person wasn't such a shock and she also had a friend of hers go through chemotherapy a few years ago and was with her when she was bald, so she had known someone well who looked like me. Greg (my brother, by the way, for those who don't know him) didn't say much except he cracked a few bald jokes and said it would be great to be bald now that summer here's and it's so hot. I was pretty much pooped out by now so I went to my room and got my jammies on and jumped in my sleep number bed with of course Alex right along with me, plugged in my heating pad for my back......and just settled in. I'm home.....Oh My God, I'm home. Thank you God for getting me this far in such good shape. I'm truly a lucky lucky gal. Those 3 suitcases and 3 boxes I see in my room will just have to wait to be unpacked and put away, because I'm just gonna do some serious chillin.

Going Home.......

Today is Thursday June 12th........the day that was soooooooooo far away when we first got here, that it's hard to believe this day has really arrived. Mom and I set our alarms to get up early, so we could complete the ritual of "the packing of the car" that we practically did non-stop when we got back from the Doctors appt. yesterday, when we found out "for sure" that we were leaving today. I'm surprised we didn't have to rent a U-Haul to get things home! How on earth and what on earth is taking up so much room in the car? On the way TO Tampa we had all our stuff AND Ashley and her suitcase in the back seat and I am not exaggerating when I say the car was totally packed from the entire trunk to the entire back seat up to the roof of the car. We had to make a "path" so Mom could see out the rear view window!! I know we did bring home the extra groceries, but still, there wasn't THAT many and we even wound up throwing a bunch of refrigerator stuff away. Oh well, one of life's mysteries that will go unanswered!! :) We had put in a full day packing the car, before we even got to Moffitt for my 8:30 am appt. to have this dangly central line pulled, but off we went about 8:00 am after saying "good-bye" to the apartment and headed to Moffitt for the last time. After checking in with the receptionist, we waited in the waiting room for about 20 minutes and then they finally called me back for my "procedure". I'll admit I was a little anxious about getting the central line removed. I was put "out" for the insertion, but was told for the removal I would just be receiving a local anesthetic. Fine by me as long as I don't feel anything! It turns out that the doctor that put it in, was also the doctor removing it and I'm kinda glad about that because it turns out he had to do some funky work putting it in because of being so thin he had to anchor it a bit unusually and sorta wrapped it around my collarbone, so that's why you could really see it under my skin. Anyways....long story short....they shot the area with a local which numbed it up big time......I didn't feel a thing except alot of pulling and tugging. I closed my eyes and sang silently to a LynrdSkynrd tune playing in the background, as I thinking....boy......this is taking longer than I thought!! And yes...it was...lucky me (I swear, weird shit happens to me).......the doctor had a hard time getting the part of the line out that has a little mushroom type cap on it that prevents it from coming out while it's in your body, so he had to use the scalpel and make a cut to get the dang thing out. He told me that usually they come out smoothly and I wouldn't even have a stitch, but because mine was difficult, he had to make a cut and then stitch it up with 2 stitches that would dissolve. So at the end of the procedure, I had an area at the top that had 2 stitches, then covered with 2 butterfly stitches that would come off on their own in about 2 weeks and another area below that (where the tubes actually came out of my chest) that was just covered by a pressure bandage of gauze and those were to stay on for 4 days and then I was free to shower. I will say I was surprised at the amount of bruising I had when the line was taken out, as there really wasn't any when I had it put in. The area was really really "tender" and black and blue.....way more uncomfortable than when the put it in! Who'd have thought that? Oh well......small price to pay, because you know what??? After the "procedure" and getting my instructions, it was TIME TO GO HOME!!! Hoo-Waa! Pinch me now.......are Mom and I actually on I-4 headed home? Oh my gosh, after 6 weeks of pre/during/post BMT treatments, I'm finally headed home, to begin the next "leg" of the journey. I'm so excited to see Ashley and the dogs, and my house and my bed.......just all the little things you miss after being away from home for so long. Only a 2 hour drive, and we'll be pulling into my driveway. Woo-Hoo.......going Home Sweet Home!

Tuesday, July 1, 2008

Last Meeting with My Doctors.......

Today is Wednesday June 11th and Mom and I were at the BMT Clinic for our 10:00 am appt. in plenty of time because I couldn't sleep past 6:30 am, when I initially woke up, because my mind kept thinking and thinking...."Today's your last day"......Today's your last day"! So I finally got up and made some coffee, and started packing a little of the last minute stuff. It's amazing how much I've accumulated in just 6 weeks here, one of which was spent in the hospital!! How do I manage to do that? It's the same way at home, I swear, I'm like a magnet for "stuff". LOL So at the BMT clinic we went through our usual routine.....weight (94.9 lbs.), blood pressure and temperature. Then over to the "blood sucking" chairs where they drew 4 vials of blood from my central line, and then we're escorted to one of the rooms to wait for the results of my blood work . I forgot to tell you that last week Mom and Kate had made bracelets for the group of special BMT staff I had mentioned in a previous blog. They were made with sterling clasps and these beautiful paper beads crafted by African women who sell them to support themselves in their native countries. Mom and Kate used the paper beads with Swarovski crystals in between the beads to make the most beautiful bracelets. Everyone was surprised we gave them "tokens of our appreciation" and they just loved the them!! I waited to give Dr. Laura's bracelet to her today since this was our last visit. I had also wrote her a note expressing our appreciation for all she had done for us. Dr. Laura read my note and started to tear up a bit and then opened her bracelet and put it on. She told us that we too were some of her favorite people she had ever worked with. Well, next came the discussion about my blood work results.....which were just great thank you very much!! My white blood cells were in the normal range, the red blood cells were low, which was to be expected and my platelets we knew would be the last cells to get into the normal range. The low red cells, basically mean I'm anemic until they get back into the normal range so the expected fatigue I'm feeling is not a surprise. My red blood cells have been low more times than not since I've been diagnosed, and I would receive a shot at Dr. Nair's office to try to bring them up. Now we're just waiting for my body to take over after the transplant. So after she explained some other things to us she asked if we had any questions and I had made a list the night before of things I needed clarification on so I would know what I could and could not do when I was home. These were my questions: Question #1...... How long do I have to wear this mask in public? (I really didn't go into much detail about my mask wearing in previous entries, but it was mandatory that I wear a mask everyday from our apt to Moffitt. I could only take it off once I was in the actual BMT clinic because they have a special air filtering system to keep out the "bugs". By the way, it was called a "duck bill mask" and it totally covered my face except for my eyes, so you get the picture!)....... Dr. Laura's answer: I don't need to wear the mask anymore since my white blood cells are in the normal range and they are the cells that fight infection!! WOO-HOO Question #2.....What are the rules about my pets? (Previously I had been told that I would have to "farm out" all 3 of my dogs for 3 months which would have been traumatic for me and especially my "old man" Alex, my 10 yo Yorkie who is used to sleeping with me on the other side of the bed. The 2 poms are much younger and I doubt they even knew I was gone ....and they have never been allowed to sleep with me...too rambunctious.... LOL) Laura asked me about the dogs....what kind...what were their habits etc. and Dr. Laura's answer...... I can play and pet my poms, just don't let them lick my face and that it was OK that Alex sleep with me!!! Just wash my hands after dealing with the dogs and I would be ok. I had one happy Alex when I got home! and the other dogs missed me too. Question #3.....How long until I can drive? Answer: You can drive now since I'm off all meds like ativan etc. and I'm just taking the oxy that I've taken for 2 years now. OMG.....we were told originally I wouldn't be allowed to drive for THREE MONTHS!! I'm now getting happier by the second with all this great news!! Question #4..... When will I be able to go out in public like shopping? Answer.......You can go out in public now....just don't go to the mall at peak hours and stay away from crowded areas of people.....but to grocery shop or run some errands is fine!! Lordy Lordy...pinch me...am I dreaming?? and the last question #5........When can I go out to a restaurant or get take out? (This was an important question as my ANC level had to be at least 1 and I had to be fever free for 4 days).....Laura said my ANC level was 4 already so I could go out or have take out any time I wanted!! You really don't know what all this means to me! From all we had read and all we had heard I was going to be a virtual prisoner in the house for about 3 mos post transplant. That's about how long it usually takes for your blood cells to rebuild and get to acceptable levels to do these everyday things. Well, I must have SUPER CELLS because none of the restrictions really applied to me. We couldn't believe it, especially Mom. She said "if I hadn't been there to hear all this for myself, I would have never believed it"!! I'm almost rolling off the bed and jumping up and down by now, I'm so happy. Can you believe I can have my life back as soon as I get home?? The only restrictions I really have is cleaning the house (FINE BY ME LOL) and being in really crowded places like a concert or sitting against someone like at a movie theatre or in other types of close quarters. Just think Germs basically......so it's really just wash your hands after doing ANYTHING and use the gel antiseptic when out in public. Hmmmmmm.......I knew I was excited this morning for some reason!! So, next Dr. Ben comes in and we discussed the possibility of going on a low dose chemo as a preventative, and that we would discuss it further at my 3 month checkup. Otherwise, he said I looked terrific, that my surgery appt for removal of my central line would be at 8:00 am tomorrow morning and he wished me well! WOO HOO......this part of the journey is over. I can't believe it. I survived a Stem Cell Bone Marrow Transplant! I am now a CANCER SURVIVOR!! I know still have a long road ahead of me, but one step at a time, my friends, and I'll be able to do it. Knowing I am surrounded by so many loving family and friends has been the main reason I've reached this point. So, the way I see things....Mom and I will be home by noon tomorrow and the next chapter begins. Coming with me? And oh....by the way....on the way home we stopped at this awesome restaurant in Tampa and got a fried grouper sandwich on a roll and french fries.....nothing has ever tasted so good :)