Small update – Combo Post: Friends / Problems

When I first started this blog I felt kind of silly posting about my illness and problems. I was like who cares about my problems, who in the world is going to actually read this stuff? To my surprise I’ve had the pleasure of talking to half a dozen wonderful people regarding Masto, not only are they awesome people and I feel better for knowing them it’s made myself worth shoot through the roof to feel like I’m actually helping people. I find that a lot of you are facing the same problems I faced early on with this disease. You have no clue in the beginning as to what is happening you just know this is not in your head like so many Doctors, Family and even friends may try to make you think. They’ll say things like you look fine to me stop being lazy, they may say things like it’s all in your head go see a shrink, I’ve had one Doctor recommend I read this book to name just a few.

I’ve been feeling really well for about 3 years now since I started the Dasatinib (chemo in a pill form those that do not know) a study Dr. Verstovsek allowed me to take part in. Now don’t get the wrong impression I still have some problems. Recently I’ve had about 3 near misses where I was concerned I may go into anaphylactic shock. I’ve been battling with what appears to be gout, it’s the ball of my foot around my big toe and boy is it painful. I went in for it about two weeks ago and they put me on steroids masto patients best friend, even after taking all the pills it began to get worse, sharp pain along with lots of swelling, I could hardly walk on my right foot. After coming home Sunday from deer hunting, I went back to see my Doctor she needed to deaden the area and then poke a large needle kind of like how they drain a knee of fluid. Let me tell you something call me a wuss that was some serious pain. She drained a very large amount and I should get the results tomorrow. I let out a holler that the entire clinic took notice. I was stung in three different areas by some unknown insect that left me itching like a mad man, that all seems to be clearing up now.

I hope everyone is doing well I apologize for not writing something sooner I’ve just been very busy with going to court, taking my girls to volleyball practice, out of town games and now Basketball has begun along with the rest of deer season. You women like to shop and we country boys love to hunt.

I would love to hear from everyone just to see how you are all doing.

Your friend,

Kevin

The BUG has landed...

Looks like the flu has arrived, one of my girls came down with the flu earlier this week, she is finally doing better and returned to school today. My youngest daughter is home with the flu now. I’m constantly washing my hands trying my best not to catch it.

For those that do not know it’s really hard for SM people to overcome common colds, flu and other type of viruses. I can only speak for myself I cannot take any cold medicines that have preservatives or aspirin in it. So that basically eliminates all the good stuff, I have to rely on Tylenol for just about everything. I’ve found this really good nose spray called Astelin that really clears me up it’s pricey as hell though.

I apologize for not writing sooner we have been so busy with school starting up, volleyball season and both girls playing, lots of out of town games and of course day to day struggles.

I have a couple of articles I wish to write about, I just do not have the time to sit down and do so at the moment. I hope all my masto friends are doing OK.

Share your Mastocytosis Recipes here!

I don’t know about the rest of you but I love to eat good food, it’s also extremely challenging for us since we tend to be allergic to anything that makes our mouth water. If you have a good recipe you would like to share with the rest of us please do so here, I know we are always looking for something new and tasty.



If we can get enough participation with recipes I'll lay it all out and make it available in PDF. Then we'll have our very own Masto Cookbook!

The Results are in!

I had my first small Margarita in 13 years. My friend is the bartender at this very nice restaurant we tend to eat on once a week. He looked at me like I was completely crazy tonight when I ordered a margarita, he’s like Kevin I thought you are allergic to alcohol, I said well I’ve never really found out how I would react, that everyone with my illness reacts differently. So I check the ingredients of the margarita mix it had preservatives so he made my margarita from scratch, poured in the tequila and rounded the glass off with some salt. Now understand I only had him make me a small margarita no sense in going over the top on my first attempt drinking my first alcoholic drink in 13 years. I sipped it lightly at first waited several minutes between each drink, so far nothing. It’s been 3 hours and no reaction what’s so ever.

My friends and wife could not believe how excited I was about drinking a mixed drink, then again they haven’t gone 13 years either. So what I learned is possibly I can drink but I still need to be on guard and drink moderately no need in overdoing it. It really felt nice to be able to go to dinner with my friends sit down with everyone and order a margarita with the rest of them even if I only ordered one about half the size and wound up only drinking about half of it. I almost forgot I honestly felt like I had a very slight buzz! J

Cheers,

Do you have a question? Feel free to ask here!

I figured I would try something different, if you have a question you need answered just post it here and I'll do my best to answer it. Also if another reader knows the answer please feel free to jump in and help.

I’ve been contemplating something and need some advice!

I’ve been debating if I should try and drink a margarita or sip some wine. I know it sounds crazy, I’ve never been a drinker so don’t get the wrong idea. I’ve been 13 years without a sip of alcohol sometimes I just wish I could have a nice glass of white or red wine with my wife at a nice candle lit dinner. I wanted to know how many people with Systemic Mastocytosis are still able to consume alcohol. If I try I will have my shots handy and only take a small sip. You are probably thinking is this guy crazy?

Sometimes I get so pissed at all the things I’m not able to do anymore.

My Visit to M.D. Anderson | Another Bone Marrow Biopsy & Aspiration

In case you did not know I’ve been participating in a research study at The University of Texas M.D. Anderson Cancer Center for over 3 years now, My Doctor is Dr. Srdan Verstovsek he’s been a key speaker at many of our past annual meetings.

2005 Annual Meeting - Dr. Srdan Verstovsek “Latest Treatments for Mastocytosis”
2006 Annual Meeting - Dr. Srdan Verstovsek — “Recent and Ongoing Studies for Systemic Mastocytosis”
2007 Annual Meeting - Dr. Srdan Verstovsek — “An Update on New Therapies for Systemic Mastocytosis”
2008 Annual Meeting - Dr. Srdan Verstovsek – “An update on new therapies for Systemic Mastocytosis”

I’ve been taking the Dasatinib (chemo pills) for a little over 3 years now. When I first started the clinical research study I was very sick. I was going into anaphylactic shock on a regular basis, the first time Dr. V (Dr. Verstovsek is known by many of his patients as Dr.V.) called me I did not wish to enter the study so I declined. A couple of months had went by and I had a severe Masto reaction to something I had eaten followed by a severe case of anaphylactic shock, I was also told I almost did not survive after waking up in ICU. When I was released from the hospital I immediately called Dr. V., I asked if I could still be included in the study? He of course said yes. Now understand this is NO cure but since I’ve been on the Dasatinib I have not been hospitalized, I’ve had some close calls. I still carry my shots and take all the required precautions, watching what I eat, staying away from strong odors, avoiding to much heat if possible and I still pay my friends son to cut my yard, these are only a few triggers I avoid. For the most part though the Dasatinib has been very helpful and I’ll continue to take my current protocol. I currently take 40mg of Dasatinib twice daily, 150mg Zantac 2 to 3 times daily and 1mg Xanax as needed. My protocol prior to the clinical study: Doxipin 10mg AM, Doxipin 25mg PM, Benadryl 25mg daily, Prednisone 5mg daily, Zanatac 150mg, Xanax 1mg as needed and Benadryl high potency shots 50ml as required. I’ve taken just about every drug known for Mastocytosis over the past 13 years. The current protocol I’m currently taking has been the best by far.

One of the drawbacks to being on this study is every time I go in for my checkup and to pickup new medication I have to undergo a new Bone Marrow Biopsy and Aspiration. I was trying to count for you how many of these procedures I’ve had done and to be honest I’ve lost count, I’m pretty sure it’s around 14. Now realize these people that do the biopsy specialize in just that, seriously they do a great deal of these every day probably over a 100. What I’m trying to say is it’s no backwoods hospital that may do a total of 1 biopsy a month. I’ll share more about the biopsy in a moment.

I wanted to share with everyone a couple of photos of the people I have entrusted with my well being. The first photo is of Dr. Verstovsek and his PA. (She was new and I cannot remember her name). Dr. V. has been great not only does he take my calls If I have a question he takes the time to answer my email. Even though he is very busy when I go to see him for my regular checkups I do my best to make him laugh or smile at least once before I leave. I’m very lucky to have him as one of my Doctors.








This lady here is Kay she was the research nurse for the study for a long time, she made sure I received my clinical meds along with making sure I turned in my pill diary. Kay told me something once, she said usually the ones who are starting to feel better get relaxed and don’t turn in their paperwork anymore. Needless to say she had to stay on top of me about my journals. I have to keep a day to day journal of when I take my Dasatinib in the morning and evening. Kay has become a very close friend even though she is no longer the research nurse she still works at the same clinic I go to for my checkups. Here is a photo of Kay and me.

I was excited to show Dr. V. my blog yesterday while in his clinic. He was also very excited to see me writing about my life occurrences while living with SM. He agrees having a positive outlook is always important.

I wanted to share a real detailed experience for those who have never had a Bone Marrow Biopsy and Aspiration by sharing detailed photo’s of the whole procedure but was not permitted to take pictures even though it was of me. Instead I’m going to describe as best I can how it went. Now remember everyone is different and everyone handles pain differently so what works for me may not work for you.

I took two 1mg Xanax about 30 minutes prior to my Bone Marrow Biopsy and Aspiration, this helps with the anxiety we tend to stress about the procedure so much beforehand causing ourselves to have complications before we even begin. I’m now able to use some type of lidocaine to deaden the area before they begin the procedure. I have my shots lying next to me in case I have a problem. Once the area is very numb they began the procedure. I’ve found that laying flat on my stomach and resting my chin on a pillow while using my hands to grip the sides of the head rest helps with the discomfort. You should only feel pressure when they begin to push down into your hip (bone marrow). Once they begin to pull the sample I feel a very sharp pain. Now the better your bone marrow is the more this will hurt. I was told the reason it may hurt more than other times is because our marrow has more good cells. When they begin the Aspiration I always ask them to pull it out slowly, not too fast. For me when they pull it fast it is more painful then when they pull it slowly.

13 years ago when I had my first Bone Marrow Biopsy and Aspiration I was unable to use anything to help with pain or discomfort, they had to do the procedure while I was on an epi drip and admitted in the hospital.

I almost forgot to tell you, when I first started the study I had to come back every month then it was every 3 months, 6 months and now I only have to come back once a year. I’m one of only a couple still having success with the drug, when I say success I mean I’m not going into shock left and right like before. Dr. V. did tell me they are starting some new studies and he would keep me updated on how that progresses.

If you have any questions regarding the above feel free to ask and I’ll do my best to answer.

Small Update / New LQQK

I’ll be heading to The University Of Texas MD Anderson Cancer Center for more bone marrow biopsies and aspirations Tuesday the 21st. I have these done every six months to evaluate my masto while taking the Dasatinib chemo pills. I don’t know about the rest of you but I dread having this procedure done.

I’m sorry I’ve not posted my pictures from my trip to Oklahoma. I’ve been very busy and very tired of late. We had a great time, the trip was very hot. My wife kept spraying cold water on my neck to keep me cool. We also stopped about every 100 miles to rest. I will still be posting some pictures time permitting really soon.

I’ve almost gone into shock twice, once on Friday and Saturday. I’ll share more about what happened in my next post. I’m doing OK but I’m on guard more so than I’ve been in awhile.

My middle daughter turned 14 today it’s hard to believe how fast my girls are growing.

NEW LQQK: So how do you like the new look of my blog? Let me know I would love to hear from you!

Learn from your mistakes!

I wanted to share with you a couple of things that happened this week. I’ve become very relaxed these past couple of years since I’ve been taking the Dasatinib (chemo pills). A lot of the life changing affects people who are just experiencing with masto for the first time does not bother me like it use to. I’ve just learned to live with it, it’s my norm so to speak. I’ve found myself not carrying my shots when I leave the house, very bad habit I’m trying to break. I’ve been taking more risk doing things I know I should not be doing. My wife and I sat around our pool with my two younger daughters the other day, as you know heat drives us crazy. I remember asking my wife if I looked sunburned she said nope you look fine, now in my wife’s defense I looked as white as always. I messed around for about an hour and then went inside the house, I was so sunburned it was scary. I had fever on my face, arms, chest and legs, I may be going to the Doctor tomorrow for sun poisoning to my right leg. I’ve never even heard of sun poisoning before have you? It doesn’t hurt it’s just bright red and looks awful.

We are going on our first long motorcycle trip in a few days, I’ve been taking extra steps to make sure I’m safe in case of an emergency. I created a new EMERGENCY CARD for my wallet, my wife’s wallet and one for the glove box on the bike right next to my insurance papers. I thought I would share with everyone what they look like so you can get an idea of the kind of information you should have available in case of an emergency, when I go into anaphylactic shock I tend to go unconscious.

Here is the front of the card, now remember you should make it stand out as much as possible to catch the eye of the person who may be attending to you during an attack.


The second image is the back of the card, make sure and list all your medical information, remember they are depending on you to help them possibly save your life.



If you have not already done so make a card, I used Adobe Photoshop to make mine. I used Microsoft Word the first time I ever made one, just make sure and highlight important areas, remember when you are no longer able to explain this card will takeover. In the early onsets of my masto attacks I had this type of thing taped to my front door, I even took one to all the EMS stations so they would understand Systemic Mastocytosis and how to treat me in case of an emergency.

I’m nervous about making this long trip to Oklahoma but I’m tired of being afraid and sitting in this house all day, I’ll share lots of pictures when I get home. I will be heading out Monday the 29th and returning July 7th or 8th. This will only be like the third time I've travelled out of state in the past 13 years.

Gypsy wrote a nice article about her life growing up listening to Michael Jackson, take a moment if you have not already done so and visit her blog here.

I’m also saddened at the loss of one of the greatest entertainers to ever live, he did get a little weird later in life, but he was the King of Pop. I still play several of his songs at our wedding receptions Patty and I DJ. It’s kind of scary he was only 7 years older than me. We also lost a beautiful lady today! I can still remember her poster hanging on my bedroom door in Corpus Christi when I was a kid, she was one sexy lady made my hormones go crazy. Farrah Fawcett was a very courageous lady she fought a hard battle with cancer.

Please forgive my spelling, pronunciation and run on sentences, my wife normally proof reads my post but she’s already asleep so you guys are going to get the raw version.

If you are a new reader and you find this type of information helpful I would love to hear from you, your comments are what fuels others like me to keep writing. I only hope that by sharing things like this it will help people who suffer from this crappy disease.

Oh one more thing, after I made and laminated those cards today in preparation for our trip I noticed I had a typo  let me know if you see it .

God bless everyone,

I made it...

Well I turned 43 today! I guess I’ll have to update my profile so it says 43 instead of 42. I’m sorry for the delay on my post about “TRIGGERS” I’ll be making it soon. My daughter had surgery, she had her gallbladder removed and she is doing fine.

My wife is the greatest person I know, she’s my best friend and soul mate I’m so lucky to have her in my life. I woke up this morning and found a birthday card on my bathroom sink, she is so amazingly kind and precious to me I could never express it enough with words. I never thought I would ever find anyone who would love me the way she does knowing how sick I can be at times. She makes all of our meals from scratch just for me, she’s an awesome cook.

I’ve spoken about this before but I felt I needed to bring it up again. I really do feel your happiness has allot to do with how you feel, if you are not happy then do whatever you can to find happiness. Surround yourself with positive people get rid of any negative people in your life, unfortunately for myself I’ve had to remove several important family members because they have no clue how controlling SM can be. I think the only thing that would make them understand is if I died right in front of them, then again they would probably blame it on something else.

My wife and three girls, all the ladies in my life are taking me to my favorite restaurant tonight. I’m really looking forward to it. The greeting cards my wife and girls gave me really brightened my day.

I’ll be heading out of town for the second time in 13 years we are going to ride our GoldWing to Tulsa, OK. for the biggest rally of the year. I’m very excited but I’m also very nervous about the heat, I’ve taken all the necessary precautions to guarantee my safety while on the trip. Always make sure and have plenty of meds, Benadryl shots, epi and a medical emergency card with all the appropriate contacts in case of an emergency.

I know sometimes you must think geez this guy rambles on a lot, I apologize for that. I see this blog as a diary about my life, if it helps others who are learning about Systemic Mastocytosis have a better understanding then it’s done exactly what I intended it to do. It’s also a great stress reliever to type about my day to day struggles surviving with this illness.

God Bless you all, who knows the next cure, could be for SM.

Kevin

Food for thought!

My wife pointed out that I’m not really sharing with you everything we deal with on a day to day basis regarding food. Please understand I’ve lived with this for so long I take small things for granted.

Eating out last night was almost a disaster, we went to dinner with some close friends of ours at a steak house called Road House. Now understand that even though I’ve eaten here before every time is a challenge here is why! Right when I entered the restaurant I asked to speak to the manager, I explained how highly allergic I am to butter, certain spices, preservatives and many other things she said no problem just tell me what to do and I’ll make sure it’s done! Now remember I’ve eaten here before so I’m feeling a little safer than a brand new restaurant. Did I mention I talked to the cook as well, I told him he had to clean his grill before hand of any residual ingredients he said sure thing no problem sir. The waitress comes over to take the rest of our order, I ask for rolls without butter (butters usually have preservatives) and a glass of tea. (Coke is the only soda without preservatives if you did not know this.)

This restaurant has a showcase cooler with different types of steaks cut daily on display, my point is I know the steaks have not been shipped frozen and the chance of preservatives is pretty slim.

The waitress returns with our steak dinners, right off the bat I notice a great deal of juice on my steak, more than normal. If you look at the juice and notice oily contents mixed in, 9 out of 10 its butter. They put butter on top of the steaks after they are cooked to make them look juicy and delicious. I was about to take a bite when I decided I better ask. My wife is a huge factor in my health, she had already pointed out the glossy look the steak had and was questioning the waitress, come to find out after the chef cooked the steak someone other than the chef glazed (added butter) the steak. I sent the steak back after my wife, friends and myself preached to them about how close they came to calling paramedics because they could not follow simple instructions. I then proceeded to educate the waitress about how many people suffer from allergies similar to mine and they should pay closer attention when preparing someone’s food. I felt pretty bad afterword’s, I think I was really close to making the waitress cry.

The main thing I’m trying to get across with this post is. Don’t be afraid to talk with a manager or cook of a restaurant. I have 5 or 6 restaurants I’m able to eat at, I know the managers by first name, and they are very nice and try very hard to accommodate my needs. You will basically have to educate people about your condition for the rest of your life so get use to it.

I’ll be making a new post in a couple of days called: Day to Day Triggers! I will share in detail how I eat daily.

How do I live?

I’ve had a lot of people ask me how to deal with SM and its way of life. I wish I had the answers to those questions all I can do is share with you what has worked for me over the past 12 years.

I take Xanax when I feel my anxiety sky rocketing, I think anxiety has a great deal to do with my flare ups. STRESS is the biggest trigger of my masto it sets off a chain of events sometimes lasting for days. It seems as long as I’m happy, watching what I eat and drink I’m able to tolerate day to day events. Food is a tough one, I still read every label of everything I buy whether I’ve bought it for years or it’s something new I would like to try. I learned early on the names for most preservatives they stick in the foods we eat, I STAY AWAY FROM anything that has preservatives period! I’ve not enjoyed a good bowl of cereal in years. It’s probably been 12 years since my last chicken leg because they are a natural carrier of histamines. I do not drink anything with alcohol no exceptions it’s just not worth it the alcohol degranulates the mass cells causing my body to flood with histamines in turn causing me to go into anaphylactic attack.

I’m still depressed after 12 years, I always ask why me? No one else in my entire family has this crap. However I’ve also come to grips with the fact that I do have this crappy thing called SM. I have 3 beautiful girls and an awesome wife these are the reasons I fight to live.

The past 3 years have been the best in a long time, I still have occasional flare ups what I call near misses. I’ve come close to going into anaphylactic shock luckily I was able to prevent it by having a bowl movement when my stomach started the severe cramping. One thing I found that works for me when I’m on the toilet cramping really bad is to read a book to help take my mind off the oncoming attack, I’ve found the more you think about what could happen raises your anxiety, BP and tends to lead into a full blown anaphylactic attack.

I tried many different things before I found what worked, you’ll have to learn your body very well to know your limits. The things that work now may not work in a few weeks, months or years so be ready to try something new.

I love life, even though I feel sick a great deal of the time I try not to show it. I try and make every day count and live like it could be the last. I hope some of the things I write help people I’ll try and write some more when I have the time. I’ve been living with this so long I’ve forgotten a lot of the small things to watch out for because I automatically just avoid them. (if that makes since)

Still Living, Laughing, Loving and Riding!

I just wanted to let everyone know I’m still around, I built a new PC recently (my old one was about to bite the dust). I’ve been really busy, my wife and I are the P.T.O. Presidents at the local Junior High School.


I recently went to M.D. Anderson for my 6 month check-up I had another bone marrow + aspiration. I’m doing very well it’s been around 3 years now since I’ve had a full blown anaphylactic attack. (KNOCK KNOCK ON WOOD) I’m still taking the Dasatinib (chemo by pill) still having some of the side effects from chemo but honestly I have no problem trading these for my old side effects of shocking every day. I’m currently only taking the Dasatinib, Zantac and Xanax, I’m no longer taking prednisone after being on it for 11 years. First thing I noticed after not taking the steroids any longer was my joints in my knees, fingers and ankles began to hurt, my left ankle swelled up considerably so I went to the doctor and he placed me on a steroid 4 pack. I finished the 4 pack and it’s been about a month since I took those. I’m doing great, I had a couple near misses because I ate something that had preservatives, I honestly feel like if I had not been on the Dasatinib I would have gone into another full blown attack. I don’t want to mislead anyone I still have minor attacks from time to time I still get the occasional cramping along with diarrhea.


I started riding again after 20 years, my wife and I have a bright yellow GoldWing. We are planning on riding with our local Gold Wing chapter to Oklahoma in July. I’ve already put around 10,000 miles on the bike since August. I refuse to sit home and just wither away.

Here is a recent photo of my lovely wife and I at a wedding reception we recently Dj'ed.

I wanted to share the happy photo's for a reason, even though at times you don't think you can continue living with this crazy illness you must!

Don’t give up on life, I promise you even after everything I’ve been through over the past 12 years I wouldn’t change a thing. I have 3 beautiful girls, an AWESOME wife and a very good life. If it was not for them I don’t think I could have made it. Patty and I have been together for 5 years, I never dreamed I would find anyone who would marry someone as sick as I was. I left a very bad marriage to a person who did not love me and honestly cared very little about whether I lived or died. I contribute allot of my not being as sick for the first time in all these years to the fact that I’m so happy with my life. Happiness, Laughter and allot of Love really can make a HUGE difference in your health. Do whatever you have to do to be happy.

I was about to give up on my blog until I noticed people actually seemed to benefit from knowledge of this crazy illness we suffer. I’ll be sharing more in the near future, thanks for reading.


God bless you,

Kevin