O-Town

We had a great weekend in Orlando!! Very tired but it was so great to be back in the real world again like a normal person!! Looking forward to next month homeward bound!! Thanks to all of you for your nice comments! They make my day :)

My step daughter Alison wrote a speach for her class. I told her I would post it. She is very proud of this and worked hard on it. So here it is:

Inspiration Speech
By: Allie Guiley♥

How many of you know someone that is or was a victim of cancer? Okay, how many have leukemia? Well, for those of you who don’t know what leukemia is, it’s a group of many related diseases. Basically, it’s when your body produces a plethora of white blood cells. There is not a particular cure, but they do have other choices to help it disappear. Such as, bone marrows transplant. Which is when they take a swab of someone else’s bone marrow that’s has the same type, and they inject it into you, and that’s what my step-dad, Rick, is recovering from as we speak, and he’s my inspiration.

He goes by the name of Rick, although his name is Richard. He is in training and development for a large insurance company. His inspiration or someone he has always looked up to is his grandfather. Which he thinks is the smartest, caring, honest, and most inspirational person he has ever met. He’s also tried to model his life like him. On his spare time he likes to hang out with friends and family, go cycling, play chess, listen to music, and talk about politics; basically, the world in general. For us that know him, we define him as positive, reliable, trusting, and mellow. When I asked him if he had any regrets he replied, “I think everyone has regrets, it’s when you discover them and learn from them that you build character.” I see a lot of character in Rick, as do his friends and family.

Rick has touched the lives of many people in many different ways. One way is he has completely changed the life of my mom, who has taken care of him and has been there for him every step of the way. She has to give him his medicine everyday and keep him active. One time while Rick was in the hospital, there was another patient with the same disease a couple doors down. It was his first time so he was very frantic. The doctors asked Rick if he could go calm him down and tell him everything was alright. Rick accepted, and he ended up telling the guy his whole experience, good and bad. Rick also has a friend in New Jersey who scheduled a run, and named it “Run for Rick”. A percentage of the profits went to Rick to help pay the medical bills. Even the people at his work will go around collecting money to also help pay the medical bills. His work also had a drive collecting bone marrow samples to see if anyone was a match. He is very appreciative for all of these donations.

Rick has a major impact on me! He and my mom have been together ever since I’ve been in diapers! So, he’s like a second dad to me. He talks to me and treats me like his blood-related daughter. When I found out he had leukemia, I didn’t really know how to react because I didn’t know what it was or the seriousness of it. But since now I know what it is, all I can do is hope for the best and keep him in my prayers. Rick had almost died once because he was in a coma for a little over a month. The doctors all said he wasn’t going to make it. We all stayed strong and kept praying. Then he woke up from the coma, and they were all amazed and said it was a miracle! Rick is my miracle! He’s been through thick and thin, and I plan to pray for him every step of the way!

While I interviewed him, I realized how much leukemia has brought to him in a positive and negative way. For instance, it has prevented him from doing a lot of what he set out to do. He has also realized who his true friends are; the ones who have stayed with him this whole time. Now he knows not to take anything for granted and you only live once. One of his favorite quotes is: “You cannot find peace with the outside world, until you find peace within yourself.” Can anybody think of what that might mean? When I asked him if he would take back getting sick, he replied: “Sometimes...I have mixed emotions about that...It changed my life and outlook on life, so it’s hard to say...Probably not.” Rick plans on writing a book about his life experience and would like to travel the world giving speeches about his experience. Rick is a fighter, and that’s why he is my inspiration!

Rick's 20th update

Hello everyone,
I know it’s been a while since I have been in touch with all of you. I apologize for that. There have been a lot of adjustments that I have been going through regarding my recovery from the stem cell transplant. The recovery from the chemo left my brain scrambled for a while which made it hard to concentrate. I couldn’t read more than a paragraph of anything without being distracted. Needless to say it was hard to focus on writing much. When the chemo effects finally wore off, the meds that they have me on keep me shaky and sometimes loopy so this made it difficult as well. But you have all been in my thoughts and I hope all is well with everyone.
We have now been out of the hospital and living in the apartment next to the hospital for the last 5 or 6 weeks. Obviously I love the apartment much better. It is such a great healing environment. The doctors have been slowly lowering my medication and keeping close tabs on my progression. All of the doctors are very pleased with my results so far. I am now at 100% graph meaning the new immune system has taken over and there is little to no trace of my old immune system. I have very little graph vs. host disease, only a slight rash on my arms and back which has lightened up significantly over the past few weeks. This means that the new immune system is beginning to accept my body as its own. There is absolutely no blast cell or traceable cancer cells in my body because the new immune system has killed them all off. I found out all of these results after a 30 day out bone marrow biopsy that I had a couple weeks ago. This was excellent news.
When we first moved into the apartment it was a strange comfortable sensation. I was still going through a lot of the symptoms from the chemo therapy yet I was no longer in a controlled environment. Everything was up to us to handle. The only food that I could taste and stomach was oatmeal and raisins. The first night that we arrived at the apartment Tracy and Melisa were helping me get organized and comfortable in my new surroundings. I was sitting on the couch while Tracy was feeding me my evening regiment of 10 or so pills along with my nightly diner of oatmeal and raisins. Melisa was in the kitchen making herself something to drink when all of the sudden I had the uncontrollable urge to vomit. It was so violent and surprising that there was no time for warning so all I could do was try my best to keep it in one area near where I was sitting on the couch. I remember looking up at one point and seeing Melisa literally running back and forth in the kitchen almost as if she were doing wind sprints for a basket ball team and she was yelling “what can I do? What can I do?” This image actually made me smile through the pain and nastiness. Then I looked down to see Tracy cupping her hands together as vomit was filling her hands and spilling over on to the carpet. This vision in turn forced my stomach into another set of convulsions and more vomit. She meant well and I love her with all of my heart but cupping my vomit as it came out might have been a little overkill on her part. But after it was all over I couldn’t help but laugh hysterically about the whole incident. We all got a good laugh after the fact.
As the days and weeks progressed eventually the daily vomit routine subsided and went away along with many of the other symptoms of the chemo therapy and we settled into a daily life of taking many medications and going to many doctors appointments. Each doctor’s appointment seemed to yield more and more good news. I have a port line in my chest that runs directly to my heart to pump medicine, chemo and blood as needed. The hospital sent out a nurse to teach Tracy how to keep the lines clean on my port. This is not as easy as it sounds because she has to be very careful to keep the area clean and inject the correct amount of “flush” and Heparin, a medicine that keeps the lines open, into the lines each night. I am very proud of how well she has done with all of this. She now does this as well if not better than some of the nurses that have preformed this procedure on me in the hospital. She has become my regular and favorite nurse! She is on time with everything and encourages me to stay active and rest when I need it. I truly don’t know what I would do without her. We get calls on a daily basis from the hospital telling Tracy to up this medication or lower that medication and she stays on top of all of it keeping my blood counts right where they need to be at all times. The nurses are always complementing us on how clean and well kept we keep my port. Words cannot describe how proud I am of her.
We have been getting a lot of visitors which helps the time go by and is a very warm surprise given the distance we are from everyone. My daughter Lily has come out a few times and on one energetic day that I was feeling great we actually videotaped my daughter and I doing silly dances to the song “You’re the One for Me Fatty” we laughed until we were crying in the living room.
Melisa has been such a blessing. She comes up on her days off, every Wednesday and Thursday and brings relaxation and fun to our little home here in Tampa. She is truly a good person and a great friend and caregiver. Tracy taught her how to clean my port lines the other night. She said it was intense, but she did a great job. She always encourages me to go out walking around this little pond located at the back of our apartment and sometimes we feed the ducks. It’s really quite pleasant.
Most of the down time out here is spent watching absolutely horrible T.V. I have never been a big T.V. watcher until I came out here and I am constantly reminded why I don’t watch T.V. Part of the reason it is so bad is because we only get basic cable in the apartment. However now that my concentration and memory are starting to come back I have started reading books more so this helps pass the time as well.
We have a busy weekend coming up with family and friends scheduled so that should be fun. I hope this letter finds each and every one of you in good health and good spirits. I think about all of you all the time and I enjoy hearing from all of you. Thank you for your continued love and support through all of this!


Sincerely,
Rick

Well, I thought since I have a few minutes in this early hour of restless sleep that I would give a quick update. It seems that a lot of this is wait and see. So far since I have been out of the hospital, I have have not had as much trouble with this as I thought I would. I don't delusion myself into thinking that there is not more to come as I'm sure there is more to come. This, like I've said before is a long process of the unknown. The doctors and nurses don't even fully know what to expect.

I know that I have and 8 out of 10 match, one of the matches is such a low miss match that they don't even look at it as important. Most of my side effects so far have been from the side effects from the drugs. But it is nothing that I can't handle for now. I know better than anyone though how quickly this could turn ugly so I bide my time and do everything they tell me to the best of my ability.

I still maintain that finding the lighter side of things and laughing about something every day helps the over all process. I hope this letter finds you and your families well and I just want you to know that I promise more to come with more interesting subjects regarding the process as time develops and I get to the point of feeling well enough to write more.

Thank you all for your continued support. This has been a hard process but one battle at a time one day at a time and one day I will be able to start my new life all over again with great new possibilities and a very strong happy future with my family friends and loved ones.

Thanks,

Rick

More of the same with more

Since my last letter to you I have had a series of ups and downs. I am sorry that I have been out of touch for so long. Immediately after my transplant I had a few significant negative reactions. First I became really lethargic. It was hard to get motivated for anything. I was extremely tired and seemed to be very nauseous at the very thought of food. My appetite went to nothing and I have been losing a pound or two a day ever since. Another major thing that happened was my genital region began to swell and hurt really bad. They told me that this was a bad reaction that they have seen happen to people, and though it is not very common it does happen and will subside and go away within a few weeks. This was not good news at all. I was having a hard time understanding how I was going to deal with it for a day or two, let alone a week or a few weeks! But as time went by I slowly got used to it.
As you probably remember, I was last complaining about the room that I was staying in. Well ironically the last couple of days that I was in the hospital they moved the entire floor to much nicer digs, the new rooms are as nice as the rooms in Altamonte. The room was huge with hard wood floors and a big bathroom. It had all the amenities including a view. However, like I said it was my last day or so, so I was moving on to the nice apartment with Tracy, which was fine with me.
Since my days at the apartment I have been on a huge regiment of pills and daily medication outpatient treatments. I am beginning to realize exactly how long and drawn out this process actually is. I have been taking comfort in the little things in life, close friends and family coming to visit or keeping in touch through phone calls. I enjoy the good reports from the doctors, like just today they told me that my Graft vs. Host disease is only at a level one which is great since they do want some GVHD to help kill the remaining cancer cells. They tell me that so far all of the negative responses are only temporary and will go away with time.

One day at a time

I apologize for the delay in writing on this blog. This process is much harder than I originally anticipated. In fact, I don't think it is possible to anticipate the things that have happened over the past week or so.

As I am writing this I am fighting off sleep from the pain medication that they have on constant flow. I will go into more detail when I am awake and doing better. Just know for now that I am do as well as can be expected and it looks like my exit date from the hospital will be around the 23rd.

rough night

Rough night last night. My mouth is beginning to get really sore from the chemo and it kept me awakefor part of the night. When I finally told the nurse she gave me adavan and some pain killers. Thid helped but dropped my blood preasure to 76/53 which is really low. So now I'm on IV fluids to bring my preasure back up to normal range.

The waiting....

I have found it harder to sleep here than any other hospital or hospital room that I have ever stayed at in the past. Because of the constant tired I might have a hard time writing as much as I would like to write.

Days here have become very uneventful since the transplant. This was not unexpected as the doctors here seem to have an exact idea of when I will start getting sick. They seem to have a cookie cutter approach with all of the patients here and we are all on the same feel good / feel bad schedule. I must say it is a little surreal comparing sick notes in the hall with other patients. But I guess it makes sense because we are all here for the same reason.

There is a big calendar on the wall of my room that has all of my treatment days, blood counts and count down to sickness. Apparently I get one more dose of chemo tomorrow and then the following days will be the down sick days. Until then it's just a lot of sitting around and waiting...

19th update

Hello everyone,
I have decided to write you an update of events that have occurred since my last update and last trip to Tampa. But first I would like to thank all of you for your great support though all of this. The letters, thoughts, kind gestures and words are really indescribable. Thank you.
So the last hours before coming to the Moffitt were crazy, fumbled and nostalgic. We were busy closing the chapter of our old life while simultaneously peering at hints of the new life to come. All of the help from our close friends cannot go unrecognized. We have temporarily moved ½ of our life up to Melisa’s garage with Dylan’s help. While we were doing this Louie, Ken, Sherri and Dana were working their fingers to the bones to get our old house in order, packed away and clean enough to be presentable. There was nothing in the house to eat so we were all fueled by the best baked Ziti and chocolate cake I have ever put in my mouth courtesy of Regina. Ken came down one extra day to put the final touches in the storage unit and help with cleaning and suddenly there was nothing more to do.
We went to Tampa the following morning at 8am. They told me that they were going to give me a twilight drug where I will be asleep but awake enough to know what was happening. Though it was fuzzy I do remember most of the surgery. They inserted the tube in my chest so that there are 3 lines sticking out for various procedures such as chemo therapy, administration of meds and blood transfusions. This time the doctors seemed more like they needed a morning coffee or a refreshing latté enema because there was no music and no joking around. This whole process turned out to be incredibly uneventful. I was sore and bruised for a day or so after but nothing too bad.
They told us to go back to Orlando and wait for Tampa to call the next day when a room would be ready. Tampa is about 2 hours from Orlando so we made the trek back to Orlando to wait at Melisa’s house. There is no doubt that there was stirring and excitement in the air. Over the past few short days we had packed our entire lives in a storage unit for a 4 month long journey in Tampa with a completely strange and unknown outcome. No one could predict what was or wasn’t going to happen. SO of course emotions at Melisa’s house were high. But I finally got the call to start heading toward Tampa. We did our final farewells and we were off.
On the way to Moffitt, Melisa treated us to a fantastic last restaurant meal. I won’t be eating out for a long while. When we finally got to Moffitt, lugging suitcases and bags in tow and we got to the main building we were informed that the bed was not ready. I asked how long it would be and they said at least 2 to 3 hours…. Wow, not a great start. But we made the best of it by finding an Apple Bees to enjoy my last beer with my old immune system. It went down nicely and before I knew it Melisa, Tracy and I were laughing and having a great time, almost as if we weren’t there to drop me off for a bone marrow transplant. But alas, I got the phone call on my cell. The bed is ready and we are ready for you now.
After all of the proper paper work was filled out we were escorted to the elevators and up to the 4th floor, wound around a corridor and to the main nurse’s station. The room is painted a dull blue green. The white neon lights were blinking above us, half burning out and there is an overall sense of drab shame to the entire floor. I was genuinely surprised. The room seems to have equipment that would have been very handy in the early 90’s. Unfortunately for us patients, I don’t think things have been updated since. The door that leads to my tiny hospital room is being held ajar by a makeshift ace bandage, one side clinging to a wall rack the other to the door handle. As I watched my friends shrinking in the distance, sadly walking away from my little closet of a room assigned to me I had the overwhelming frowning feeling that I want to go back to Apple Bees now. I later learned that Tracy and Melisa went to the bathroom to weep about the horrible condition that they were leaving me with.
The next few days were very trying, the chemo was much more potent and I’ve had a lot more reactions to the chemo. 2 days prior to the actual transplant my feet had developed a strong burning sensation. This was especially hard because I found myself having to sit straight up in a chair with feet soaking in ice. They began administering a drug to help prevent fungus and one of the side effects of this drug is hallucination. It was not uncommon to see me sitting in a chair at 3 in the morning completely alone, both feet in a bucket of ice and petting my dog while talking to someone who even I knew wasn’t there.
The day of transplant was finally here. They call it day zero. Ashley, Lily, Melisa and Tracy were all there for the occasion. I remember the doctor telling me that there is a 10% chance of mortality just from the transplant alone. They hooked up the machines and administered a bunch of pre medications which needless to say made me completely useless and loopy, probably actually a hindrance since I got the great idea to take pictures of everything going on. I remember a guy standing at the door telling me he didn’t want his picture taken as I chuckled and took another snap in his direction. He was not pleased but I didn’t care at that point. They were killing me and bringing me back to life with someone else’s immune system, like science fiction! What did I care what anyone thought at that moment!
In the end, after the drugs wore off and I woke up the next morning feeling the same that I had been feeling for the last 32 years, I realized with a sudden calm that I just beat 10% of the odds, not bad.
I hope all of you are doing well. I will continue to blog on http://www.blogger.com/home?pli=1 I hope all of you will subscribe. I love hearing back from you and I apologize if I take a while to answer some e-mails or posts, as you can probably tell, I have my good days and bad days.

Thanks again for all of your love and support!

Sincerely,
Rick

Day 10 Exhausted

Hello again, this is Tracy. I just wanted to touch base and let you all know that Rick is doing awesome under the circumstances. He is literally exhausted. He feels like a truck ran over him and deflated any energy he has. He sleeps off and on and has very vivid dreams. Sometimes he carries on conversations in his dreams, they are that vivid. His blood work is looking good and he is hopefully starting to trend upwards and the stem cells are starting to graft, but still a little early to tell.

He is feeling a little on the bluesy side, so all encouraging words are much appreciated. Love and miss all of you! Tracy and Rick

The New Start

Hello all, this is Tracy posting a blog for Rick. He has been out of commission for the last few days. So I decided to try to catch you all up. Please bare with me, as I do not write anywhere as well as he does.
He has been in a lot of pain the past 3 days, the pain being in the bottom of his feet. He says it feels like someone is taking a lighter to the bottom of his feet and moving it around continuously. He has not slept in three days because of the pain. The little sleep he has gotten is when he is sitting straight up in his chair with his feet sitting in 2 buckets of ice.

The transplant went very well. They started at 11:37 last night and was finished by 1:25am. We were all scared to death, not knowing what was going to happen. They gave Rick some Adivan, Benadryl and Diloted about 30 minutes prior which calmed down the shakes he was experiencing due to nerves and feet pain. His left hand went numb for about 15 minutes which freaked out the nurses, but we never knew it until they said something about it at the end. Our nurse Mandy was awesome through the entire process, she had a great sense of humor. Rick was taking all kinds of pictures in his drug induced stupor.
He starts on a new med tonight at about 1:30am that keeps his new stem cells under bay, and hopefully will keep his graft vs host disease to a minimum. This medicine is known for causing very bad mouth sores and stomach issues. This weekend through next week will be the worst of the worst, but they keep telling us it has to get worse before it gets better.

Hopefully we will have Rick up and blogging in the next day or so. Thank you all for the love, support and prayers, couldn't get through this without you guys.

Special Thanks to Melisa (my rock, because my other rock is currently under repair) Ashley and Lily for being here for Ricks new Birthday as the Nurses put it. We love you guys.

Day 6...

Today has consisted of small intervals of reality peaking in on me. The nurse tells me that my feet are burning because of a reaction to one of the chemo therapies. They keep giving me drugs, anti-this and anti- that but these drugs see to just keep me in an uncomfortable state of being. Sleep comes but not for long. Soon someone is at the door or on the phone to disturb.

My uncle and my grandmother came to visit me today and brought me lunch. This was a very sweet gesture and I appreciated it greatly. Unfortunately I slept through most of their visit. I apologize for the lack of substance in this particular blog. Sometimes it is difficult to find words.

Day 5 Chemo's first blow

This morning was the first time I openly got sick from the chemo therapy this time around. I have not had very much sound sleep since I have been here so my sleep pattern consists dozing off sitting straight up in my chair. Early this morning shortly after my nurse removed my chemo bag for the day, I began to maneuver my way to the restroom when suddenly I realized that I was not going to make it to the restroom. No stomach ache, no warning, just projectile vomit all over the place. One more point for cancer. That was an unpleasant and unwelcome surprise. My nurse helped clean me up and took mercy on my by giving me some anti-nauseous pills and a shot of benadryl in my I.V. to help knock me out for the remainder of the morning.

Right now I am feeling much better. One of the doctors came in this morning and we had a long talk about how trying these next few months are going to be but in the end everything else will look like small potato's. He expressed how much good fortune he has seen with this transplant and there are a lot more people that walk away from this having a normal healthy life than don't.

Two of my angels, Tracy and my daughter Lily are coming up to visit today and I look forward to their company.

Day 4 The smell of hospital

Early this morning one of the techs here potentially saved my life. This life save had nothing to do with treatment or cancer though. This life save had to do with something I have been even more afraid of.... My hospital room. The tech happened to notice the plug attached to my bed was burning through itself. So they had to replace my bed so I wouldn't catch fire in the middle of my restless sleep here.

I am definitely taking a lot more medication here. They actually have me on anti-seize medicine because of the chances of seizing during one of the chemo therapies. Apparently the strength is much more powerful for transplant preparation. The transplant is scheduled for Wednesday. It's hard to believe it's only Saturday. Hours are drawing on like days.

- we all assume the worst the best we can and for a round or two they'd gladly drag you down

I can tell now that the chemo therapy is only beginning to set in. I have been feeling slightly different over the past day or so but this morning I am beginning to feel the effects. It also didn't help for a nurse and a doctor to come in my room this morning and remind me that I am going to get much worse before I get better. I know I'm sounding down and dark right now but that is how I'm feeling. I know there will be better times to come soon. This writing therapy helps though, in some small way, even when my tears burn my eyes shut. I awoke this morning with the bad metallic taste in my mouth that only a person who has taken chemo in the past knows. My stomach just doesn't feel right and the song in my head keeps repeating "the smell of hospitals in winter, and the feeling that it's all a lot of oysters and no pearls". However, I can't help but think of my pearl coming to visit later today, her name is Saint Tracy and she is my strength and warm light in this drab place of misery and discomfort.

Day 3 the digs

It has been my experience so far that day to day living in the old half of this hospital is not unlike any other hospital I've lived in. The staff seems cordial and nice enough though most all of them have that distant vague awareness just below the surface that they seem to bury in day to day menial activities that by now most of which I could preform on myself.

I can see now why we were never given a tour of their living facilities, and I am now doubting that it had much to do with spreading germs to transplant patients. There is a rumor going around that by the 15Th of February another side of the hospital will be having it's grand opening and we will all be shuffled into bigger much cleaner and more luxurious rooms. This is something to look forward to considering the drab closet of a room with a view of another building that I currently occupy. The room is small enough to make more than 2 people in the room twist uncomfortably around the medical wires and furniture. There is a huge door that leads to a small very old looking hall and nurses desk. In my room there is a 23 inch T.V. hanging from the ceiling with a VCR under it hooked up and ready to watch the best of whatever cheesy 80's movie I prefer. All of this reminds me very much of the very first time I was diagnosed back in 2006.

I was released from my tubed shackle's today for a few hours for the first time since being here. My chemo regiment will resume around 3pm today and until then I can take a shower, rest and move semi-freely. The day nurses all encourage me to walk around as much as I can to keep my muscles and body sharp for what's to come. However there is simply not very far to walk and not much to do. I am coming to the conclusion that I am here to wait it out. These are not the good days. There is a calendar on the wall with the various medicines and treatment in preparation for the transplant as well as what they call the plus days after the transplant. They tell me that eventually this calendar will become very important to me as a guide to get out of here counting down the days and the treatments. Unfortunately, I have found myself already doing this.

I feel like Edmond Dante in The Count of Monte Cristo where he tells the Priest that there are 7,548 bricks in his cell, he knows this because he has counted them many times. The priest responds with -aahh but have you named them yet?

Day 1 and 2 in Moffitt

Hello everyone,

This is a daily blog that I am testing. I would like to see how effective it is to blog most every day my experience. I'm not 100% sure how this works yet so I will keep it short. So far my experience here in Tampa has been great! The chemo is nothing new and all of the staff here has been nothing less than excellent.

I started my first round of chemo late last night and slept through most of it. Today has been a barrage of doctor instructions and schedules and really nice people informing me of the goods and not so goods of the procedures to come. I will inform you of everything as I go. I need to figure out exactly how this blog thing works first.

I will leave you with the knowledge that I am doing well so far and I expect the worse but hope for the best and probably will land some place in between. Overall I get the deep sense of feeling that I will be OK after all of this.

I will keep in touch and talk at you soon!

Rick