| New Year's Eve Memorial |
[Nov. 23rd, 2006|07:44 pm] |
Hey livejournal friends! Steven's friends in California are having a memorial benefit for Steven on New Year's Eve. My mom, sister, aunt, and I are planning on attending if all goes well. You can check out the details and order tickets from the website. The website is www.premiernewyear.com. We are so excited about visiting with old friends AND seeing Beverly Hills.
Lots of Love,
Amy Jo |
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[Oct. 29th, 2006|02:37 pm] |
There has been a change in the funeral arrangements for Steven. Due to the fact that we are Catholic, he cannot be buried on November 1st. It is a Catholic holiday and you are not allowed to be buried on this day. He will be open for visitation on Monday October 30 and be buried on Tuesday October 31st! Prayer service is at 7:00 on Monday night but he will be open for visitation at 10 am. His funeral mass is on Tuesday at 11:00 am. Sorry for the sudden change but we just met with the funeral director. Please call or text all that you know are planning on attending.
Amy Jo |
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| Mackin' till the end |
[Oct. 28th, 2006|04:22 pm] |
It has been a wild ride! Steven lost his battle with Ewing Sarcoma today at 2:20 pm. He went in the most peaceful way. He went to sleep with a smile on his face. To all of those who love him, we want to share our grief with you. He will be open for visitation on Tuesday, October 31 in Springfield, Kentucky. His burial will be on Wednesday in Bardstown, Kentucky. My little sister and I were actually reading his Live Journal and laughing when they came to get us for his last moments. We were reading the Christmas 2005 entry...and laughing our asses off.
We have been comforted in these last few days reading your messages to him and the memories you shared. He was well loved. He was an extraordinary person and we were so lucky to walk this journey with him. If you would like to make a donation in his name, he was very interested in the AIDS cause in San Francisco as well as the American Cancer Society research into Ewing Sarcoma. We will personally be donating to Hospice of Nelson County. They made it possible for us to be with him at home for the last week. They made his passing peaceful and pain free..his only dying wish. Our thanks goes out to Lenny Mudd, his nurse. His compassion and outlook on death made Steven's passing a joyful event. His spirit lives on in all of us.
We will keep his cell phone on for the next couple of days if you feel the need to talk about him or to share in our memories. Please continue to share your memories of him...he was mackin' until the day he died!
Amy Jo and Tory...Steven's sisters. |
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| It's Been A Good Ride |
[Oct. 22nd, 2006|06:44 pm] |
SO a few days ago I got some news that most of you will find disturbing...Most of you don't understand the severity of the cancer and how it affects the body. When my Ewing Sarcoma came back about a month ago. It came back much stronger than it did the first time around. At first I tried to brush it off like I would be okay but then realized that the severity of the case would eventually catch up to reality. This is the reality...I have been given weeks to months to live. It is a tough pill to swallow but I have a large family for support who diligently stay by my side. I am still in the hospital at University of Louisville. I am in a minimal amount of pain. There is also a problem where I have very limited mobility. The tumor has caused both of my legs to be nearly impossibly immobile and I am wheelchair bound.
I apologize for those that have been trying to call me and have received voicemail or very short responses. The changes in medication that they have given me have left me near speechless at times. My speech is often inaudible because of severe mouth numbness. This has nothing to do with any of you who have offered support. Some of you friends I have never met but you have proven to be the biggest supports that I could ever imagine. So this is a THANK YOU!
I understand that this situation is never easy and I would like to show my gratitude for everyone who has helped me and my family thus far. Your attention and caring will not go unnoticed. I might not be able to write thank you cards to each of you but I love each and every one of you for doing what you did. Everyday I had a smile on my face from my LiveJournal. I never knew that this community would ever become such a second family. In fact, the very first gift that I received in the hospital was from Kevin ![[info]](http://l-stat.livejournal.com/img/userinfo.gif?v=92.1) labelsdc . Kevin has shown to be one of my best friends... Whether taking awkward pictures of me eating chinese food or how not to wear a toga, I will always be gracious for his friendship.
And behind the scenes...Vern and Aaron have also shown to be quite supportive. Just this week I received a Build a Bear from Vern and Aaron. If you could see it, you would die laughing. It totally suits me in my time of need. If I were home, it would be something that I would be wearing...a hot water bottle on my head and a nice comfy pair of pink panties along with a matching pair of bunny slippers.
I know that I have received numerous gifts, cards, candy, and visits. For right now these two stick out in my mind. The LJ community has really shown that it has a heart. I thank each and every one of you for being a part of my battle with cancer.
My prognosis:
The doctors have been very honest with me. They say that my time on the earth is very limited. It doesn't mean that I am sad or crying all the time. It means that I am just here with my family spending the best possible time that I can. Santino, my boyfriend, went home on Friday. I would like to thank him personally for all the aid he gave me and all the love he showed me. I am an extremely difficult patient at times and he never once faltered. To me, that is love. So when you pray for me, send him a Thank You as well.
So this might be my final LiveJournal entry. I didn't want to keep people in the grey with what was going on with my body. My family is taking me home in a couple of days. If you are in the area, please call and see if I am up for visitors. I will not be the best host because my face is really swollen and it is difficult for me to speak, but all love would be appreciated. So please keep that in mind. Always remember the fun times and think of me and smile. It has been a good ride! Never forget the silly shit I did on here and even though this might be a sad entry, all you have to do is scroll back 5 or 6 entries to remember my obsession with "That's So Raven" and "Making the Band".  BOOM KAT! Don't forget...no matter what,,,I am still 'Mackin until the day I die. I love you all!!!
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| Two small updates...both promising... |
[Oct. 13th, 2006|04:37 pm] |
So about an hour ago, my medical team came into my room to discuss two different options they have pondered the past few days. One of which is a drug that will prevent my antibodies in my blood from destroying and attacking my platelets. The other is to, while performing radiation, to radiate my spleen with small doses because it seems that the spleen might be one of the organs that might be "eating up" my platelets.
Both of these things have their risks. The radiation to the spleen should be the less trouble-some. I think that this procedure sounds promising. Like I said... it's all about quality time and time I get to spend with my family and loved ones. Success with either of these procedures/medications is NOT guaranteed, but it is nice to have a little bit of hope and promise.
The drug is called RITUXIMAB. Other names for it include Rituxan.
Here's how it works:
Rituximab acts specifically against cancer cells to slow to stop their growth. Most of the cells destroyed by rituximab are cancer cells, but some of the normal cells in your body may also be affected. Unwanted effects that occur when normal cells are affected by rituximab are called side effects. Duh.
Basically this drug LOOKS like chemotherapy on paper, but in real life, it's not chemotherapy much at all. They are hoping to cope with my immune system enough so that the platelet levels are allowed to increase to higher and healthier levels.
Okay...I didn't mean to get long-winded about drugs. But yeah...don't these seem a little bit promising? It's almost like there was NO hope....and now there's a glimmer of hope as far as keeping me around that little bit longer. :) I'm gonna fight it, I promise!!!
Thanks for everyone being concerned with everything going on here with me.
On another note... I got to spend some awesome time together with my mom and my sister Amy. Amy is my power of attorney, and she deals with ALL the paperwork, too. I love that girl. Tonight, I'm not sure who is spending the night with me. I think my aunt Darlene might be spending the night with me tonight on the sidecar. She's always a hoot, and she has a similar disposition to my mother, which makes things so much easier from a patient point of view.
Aaaaaaand... very excited... Santino comes in on Monday night. I'm so pumped. I'll post pics of us together if I don't look too swollen from the steroids they've been giving me. It's freakin' crazy. My face is all round and shit. I'm OVER it. But today I was able to shave and do a good spongebath. I feel so fresh and so clean clean.
Once again...thanks for all the prayers and love... :) Keep 'em coming, and I'll keep posting about my condition as long as I can manage. XOX
And I love chocolate and candy! That is all. |
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| Hmm...Friday the 13th??? |
[Oct. 13th, 2006|07:17 am] |
So strange that it's Friday the 13th, you know? On this date in 1995, my cousin Shari and several friends were in auto accident that took the life of a childhood friend. Wow...11 year ago. Makes me feel so damn old!
I'm still in the hospital. Today makes three weeks of admittance. THREE WEEKS! That's a long fucking time...and I'm not sure when I'll be able to go back again. See... one of the biggest problems is that my platelet levels are not going up. They are at a pretty dangerously low level, and before the physicians want to continue with any treatment, they'd like to get the platelet levels under control.
Here lies the other problem. When I was getting chemotherapy in San Francisco back in 2003 and 2004, I was basically getting the most powerful chemotherapy known to man. And the residual effects of this chemotherapy include a body that's unable to keep up with the cancer if the cancer comes back. My bone marrow is making plenty of platelets, but my body keep rejecting them and "chewing them up" so to speak. I've had several infusions of platelets, but my count remains dangerously low. We're laying here holding out for a miracle, honestly. Because if my platelet level stays the same or drops anymore, I stand a high chance of hemmorhagging from simple things. I could hemorrhage from any area including my brain without even knowing it until it's too late.
Why am I telling you all this? Because this is real... This is really what's going on with my body. The radiation doctors are preaching RADIATION RADIATION RADIATION! But they finally realizing the complexity of the situation at hand. Radiation would damage the bone marrow making it even more difficult to create the platelets that my body isn't using anyway. Ugh. It's a vicious cycle.
Yesterday, my oncologist came when my father was visiting from Springfield, KY. When he told me the bad news, I didn't cry... I was just upset that there didn't seem to be a "plan B" so-to-speak. I mean, he didn't mention any real options. What he did want to know, however is make sure that all my death-bed and funeral and life support wishes were going to be met if we reach that point in the road. It's a lot to grasp.
I guess something I haven't shared with you guys is that chemotherapy really isn't an option this time around. The own drugs that saved my life 3 years ago might be causing me problems today. And it's not something we can easily cure. There is no cure for Ewing's Sarcoma. Period. There never has been, and there never will be. All we can do is use radiation therapy to try and shrink the tumor to buy me some more time. That's all I really want is time...
I am not trying to write this LJ post to be morbid, but I am trying to inform you Why you haven't heard from me too much, and spending time with my family. They've been great. Maybe I should get sick more often, right? LOL Okay, bad joke.
All I want right now is a plethora of good people sending me good energy...healing energy. I don't know how this is going to end. But there are a few possibilites you'd like. I always will answer. And look, I know this is totally morbid and scary...and it's those things to me, too. But my life has been great. I've done so many things with so many wonderful people. I consider myself truly a lucky guy. I'll be even luckier months down the road given a little more health and a little more luck. I really want to spend more time with my friends and family before it's that time.
I've been working on a few things... trying to sew up lose ends in my life. You know... apologize to those who probably deserve an apology. I've been trying to chat up with a few buds from the past and just say "hey buddy, I love you." Or smething like that. It's starting to work. I feel a big negative energy release from my chest...and I'm glad I can sleep more so now.
So here is a quick summary of what I'm trying to say in this long ass email.
1. Platelet count is seriously low, and so we're gonna work on trying to bring it up more...very risky.
2. Cancer seems to be treatable to some extent. Get into radiation by mid-week next week.
3. Mobility in my right leg should improve when we start radiation next week. I might be waking again in no time.
4. I'm having to plan out some serious things for my future. So be careful when you call or if you call. It's been a really really tough time.
5. Thanks for my family and friends... I would not be here today if it weren't for all you.
Please pray that this situation improves. It's a very difficult time for me and my family, but all I want is more time to live the life I've been given. So pray for more time and quality of life. Please. |
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| Plans forever changing...and fast. |
[Oct. 4th, 2006|04:32 pm] |
So all day long I've been waiting for this MRI to happen. It has never happened, but my coordinator has been trying to get me transferred to the University of Louisville Brown Cancer Center so I can continue (and start) my treatment up there. She was in here on Monday, and she's a total boob. Seriously...I doubt if she knows her ass from a hole in the ground...but she's the one in charge of my transfer. Whatever...right? She came in here this morning and asked me a few really useless questions about my past treatment and my insurance--all things you can EASILY find on my chart. I didn't feel confidence in her at all when it came to getting me transferred, but I guess I was wrong. Ugh.
She came in here about 20 minutes ago and says that at 530pm CT, an ambulance will come to send me to the University of Louisville Medical Center. WTF? She came in my room and gave me a 2 1/2 notice that I'm being transferred three hours from here--like nearly 180 miles! I don't think this is fair at all. It's going to put my mom on the road late. She probably won't get home until like 930pm or something. All I will have to talk to me when I get there will be the physician on call, and it'll be practically the middle of the night before I'm even halfway settled.
Poor planning has been the name of the game when it comes to what I have dealt with here at Vanderbilt. Remember how I was going to have this HUGE major surgery last Wednesday, only to find out at 230pm the day of that I was only going to have a biopsy? They want me to keep my stress levels down at times like this, but this seriously tests my ability to remain cool. I don't like quick changes when it comes to my healthcare, and I like to have everything planned out in advance.
Okay...so I'm sorry I'm totally venting here, but I needed a place to vent because I didn't want my mother to have to listen to it. She's already upset with the system as it is, and I don't want her any more stressed. She just now left to take a shitload of things to the car. We've been here two weeks, so there's quite a bit of stuff. I guess there is a good part to this, right? I am closer to my goal of starting treatment in Louisville. I will be over 100 miles closer to home, and my family and friends will be able to visit me and stuff. I will be going home (HOME) soon after the start of radiation therapy. These are all good things...and I should be concentrating on that, right?
Okay...*sigh*....I'm better. Thanks for reading. I'll be in Kentucky in a few hours. HUGS to all.
Oh...and one more thing... I'd like to take a moment and thank my BFF Kevin labelsdc for the once-thought anonymous bamboo and balloon vase I got last week. It was the first thing I got from anyone, and I should have known it would have been from brownie! It didn't have a card on it, but thankfully I got the skinny today. Thanks boo! Love you! |
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| It's been about a week...health update |
[Oct. 3rd, 2006|06:07 pm] |
So it's been nearly a week since my biopsy here at Vanderbilt Medical Center, and I thought it was about time to let everyone know what else is up. I've been admitted here at the hospital for about 11 days now, and I'm starting to get a little homesick and ready to get the hell out of Nashville. Nashville isn't a bad place or anything, but damn...I just don't wanna be in the hospital anymore!
I had a few awesome visitors over the past week. My mom and my sisters Amy and Tory were here on Tuesday for the surgery that turned into a biopsy, and they stuck around until Friday morning. On Thursday afternoon, I was taken down to radiation oncology to have a consult with the doctors down there. The plan is to attack the cancer in it's current state with radiation until it starts to shrink and then zap it with a shitload of chemotherapy. Surgery may or may not be an option between the two...or after chemotherapy. I think I will probably not have surgery anytime in the near future, but I will get cancer treatment until I'm knocked back into remission. That's sorta what I'm hoping for, you know?
Thursday was a complete bitch. I was seriously sore from the biopsy on Wednesday, and having to get onto a stretcher from my comfy hospital bed with a foley catheter AND a drain tube in my back caused me to have a total breakdown. I'm a big puss when it comes to pain anyway...and I don't like surprises. I just figured that I would have a consult in my actual hospital room with the radiation docs, but they wanted me to travel all the way through the hospital just for a visit. It took me an hour or so and a shitload of morphine to calm me down, but eventually I was smiles again. The visit was brief, and I really didn't get much accomplished. We didn't do any scans, but we did discuss treatment.
( More from my weekend and visitors and crap behind the cut... ) |
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| Another Health Update... |
[Sep. 28th, 2006|10:10 am] |
So the funny thing about being tentatively scheduled for procedures and undergoing cancer treatment is that plans and things are constantly changing. You never quite know what's going to happen from day to day, and sometimes what seems like the most important surgery can be cancelled at the last moment upon further review. This is sorta what happened to me.
Late yesterday afternoon, I stil hadn't eaten anything in preparation for this large surgery I had scheduled with several teams of physicans. I was seriously nervous, to be honest because surgery isn't some fun thing. You wake up with some of the worst pain and pressure ever, and confusion is a bad bad thing. One of the doctors told us though that if we hadn't been prepped for surgery until after noon, then the surgery would be cancelled for that day. Well, noon came...and nothing happened. In fact, I didn't hear a PEEP until around 2-2:30pm when one of my surgeons, Dr. Ginger Holt (totally rad lesbo) came to give us a little update.
Dr. Holt said that she had discussed my case with a slew of other physicans at that morning's "tumor board" (a meeting of doctor's to discuss specific cases cancer and treatment options) and upon further review, surger didn't seem to be the most necessary thing to do at this time. I'm still a little baffled as to why we didn't do surgery, but regardless of the reason, it was cancelled.
She said that she wanted to do a biopsy though of the tissues in the area to make sure we were still dealing with the same disease...and to make sure that cancer was actually present. When I had my original surgery in 2003, lots of metal was placed in my spine, and it causes a "shadow" of sorts when scanned by CT or MRI. So sometimes it's difficult to decipher cancerous tissues from heathy tissues and scar tissues. So yeah, my biopsy was still on for later yesterday afternoon. She said they would make a couple of large incisions on my left rear pelvis and remove some tissues for diagnosis and review.
Around 330pm, I was wheeled down to the prep area for the biopsy procedure. I get really stressed out when getting knocked out, and for some reason, they didn't let my mom go along with me. This really bummed me out, and I was tearful the entire time. I know I'm a puss, but whatever... that's how I roll. I don't like uncontrollable situations, and being "put to sleep" is definitely one of those uncontrollable situations.
What was supposed to take an hour to complete took several, and I finally woke up around 830 or 9pm in the recovery room. I immedately started calling out "Eddie" for some weird reason. I think I thought my name *was* Eddie or something... but whatevs. The pain was EXTREMELY terrible. The incisions to my ass were really deep, and I felt like I had been hit by a truck in my hip/pelvis. NOT FUN! However, the recovery nurse said that the procedure had been successful. Good stuff.
I finally got to my hospital room around 10pm with my Mom and two of my sisters were on the phone with Santino (the guy I am seeing.) That was a pleasant surprise. They were all waiting for me with smiles on. I heart my family....well, most of 'em. And Santino has been so supportive and helpful. Mom and my sisters went to the condo of a friend last night for some real rest, so I spent last night alone. That was kinda lonely, but it's over... mom's on her way back over now with the girls.
The results: Well... the cancer is most definitely back, and this time it's back in different kinds of areas. I didn't have any cancer in my pelvis originally in 2003, and now I do. There are also other areas that might be affected as well. This is definitely NOT good news...but the doctor's are optimistic. When I originally did my cancer treatment, I responded very well to chemo and radiation, and they are expecting the same thing to happen this time around. They also expect that there are possible "micro-lesions" (spelling) of cancer patched here and there. These tend to respond very well to treatment, though... so I might be okay.
So at this time, I'm not going to have a large serious surgery, but I will be staying in the hospital for more pain management and then a review of my cancer case to plan further treatment. I think I will be out in about a week or so. Thanks for all of your thoughts and prayers... I feel a little better already. Also, someone sent me an anonymous group of bamboo in a vase with a Pooh Bear balloon attached. So thanks to whomever for that as well.
I'll post whatever new info I find out in the next few days. XOX |
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| Quick Health Update... |
[Sep. 26th, 2006|04:10 pm] |
So I know I have been terrible about updating my LJ ever since late June and even throughout July. I'm not sure what's been up. I didn't do anything else. Lord knows I wasn't going out, and I wasn't spending time with my friends. I guess what I mean to say is that I figured something was truly wrong with my body, and I was preparing for whatever it was that was going on.
The second week of August, I had my scans done at Vanderbilt, and they showed no signs of growth or change. But I still couldn't get over this back and leg pain I was feeling. It kept getting worse and worse. A week after my scans, I visited this someone I've been dating in Las Vegas, and I had difficulty even getting about of the best most days. The pain generally cleared up with some mild pain relievers and some heat, so I didn't think anything of it. I was home a week later with little or no pain.
Well, I flew back out to Vegas on September 12 for a 2nd visit. Almost immediately, I started having more and more and more pain....pain to the point of me not walking. I even went to the Emergency Room out there...which didn't do much good. They just looked at me and gave me some highly generic pain pills that didn't do a damn thing. The pain continued to worsen and worsen, and finally my flight out of town came up the following Thursday.
When I arrived home on Thursday (Sept 21), my sister immedately took me to the Emergency Room in Bardstown for some pain medication and evaluation. By then, some nerve damage had set in from a pinched nerve in my spine, and the emergency room physician was ready to ship me down to Nashville for a neurological evaluation. Personally, I had no idea it was this serious, or I would have pushed for some tests while I was in Vegas. Around 8am, I was rushed down to Nashville via ambulance, and the rest is basically history in the making.
I had an MRI done when I first got down here, and it showed that the cancer had returned in my L4-S1 spinal area, and it was pressing against nerves including my sciatic nerve causing me extreme discomfort and pain. So yeah, the cancer is back...and it's in a few different spots along my spine...and I'm having surgery to correct it. The surgery is tentatively scheduled for tomorrow morning, but you never know with cases like these. There are four separate surgery teams assembling to complete my procedure, and it should last somewhere between 8-12 hours.
So I guess I'm just posting because a LOT of people have been asking me what's up...and where I've been, etc. And it's time they know what's up, I guess. I finally got some internet access here at the hospital thanks to east_ky_cub. Without him, I don't know what I'd do! I have some friends coming in for a visit from the West Coast on Saturday, so that should be nice as well. I have a lot of support, so all I really need is just some support and positive thoughts coming from you all. I think I will pull through this surgery well, and so does the rest of my family.
If you'd like to send a "get well and here's 100 dollars" card, my address is:
Steven Mackin
117 Washington Ave
Bardstown, KY 40004
I'm totally kidding about that 100 dollars part... but cards are nice, I guess. I don't need anything, and just knowing that people care will definitely get me through the worst of this.
My mom and sisters will be in control of my phone tomorrow morning and afternoon to answer any well-wishing questions and comments taken when I'm under the knife, so plesae keep in mind that I won't be around. It might be best to wait a couple of days to call anyway.
Okay I'm gonna wrap this up. Here is my current location in case you're only a hop, skip or a jump away and want to give me a hug pre-knife!
Steven Mackin
Vanderbilt Medical Center
Round Wing
Medical Tower North
Room # 5447 S (as in South)
LOVE TO ALL! I'm sure I'll pull through this! |
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excited
sad
I'm here
I'm over it....but improving.