Some doctors are stupid!

I was in the doctor’s office today getting prepared for a simple procedure that 99% percent of you will never have to get or even worry about in your life. The last time I saw this doc was a year ago where he performed the same procedure on me that he did today. The doc was explaining how my cancer is rare and that he usually deals with people with ovarian, breast, or lung cancer, and when those people are at such a late stage in the cancer that he won’t see them one year later. Great doc, so I’m suppose to be dead by now, is that what your saying? I am the luckiest man in the world, I guess. It’s different knowing and understanding yourself that I will be living with cancer for the rest of my life; however, hearing stuff like that from the doctor really jolts the system. It really puts things into perspective.

I have always believed in the good old hearty laugh. A good laugh to make you feel better when your feeling down. However, today I realized the power of a good cry. Sometimes laughter is not always the right emotion to let out. The only thing to get me through today was a cry. It felt good. However, I do think I need a good laugh soon. FYI.

For two weeks now, I have had difficulty breathing. I went to my first day of classes the day after Labor Day and could barely talk because I could not breathe and it took me for ever to walk to my second class because I was out of breath. Shit that should not be happening to any person. Even if I am sick, I should still be able to do normal daily things like walking. I called out sick to school and went to the doctors, so I could start breathing. However, because I looked so good sitting in the wheel chair there was nothing for the doctor to do apparently. My sweet ass goat-tee and dark tan can fool any doctor, for looking good even though I could barely breathe. The CAT scan we got two weeks ago showed fluid in my lungs. This isn’t my first rodeo with fluid in my lungs. It took two weeks for the doctors to finally do something and that was just ordering oxygen. Just about how pissed should I be at my doctor? I guess thats a good first step. Anyway, the nurse called the next day to come in to the office to get the lung tapped. So that procedure I got that most of you will not be receiving was me getting my left lung tapped. I got 2 liters of fluid taken out of my left lung. No wonder I couldn’t breathe!!!!!

Now, my real dilemma is what I do about teaching. The first week of school has passed and I missed three out of the four days. As a math teacher, not a good percentage to start the year. I was on the phone with the union rep about to cry after every word I spoke because I just don’t know what to do. What perfect timing. I want to teach. I want to get out of the house and keep busy instead of sitting home and watching TV. However, I am not really trusting my body these days. The most recent fluid in the lungs to my fractured T1 vertebrae. What do I do? I have this weekend to really think about it because I cannot let these students have more days without a teacher. It is just not fair to them. It doesn’t look like my teaching career starts this year.

I have been just letting my hair grow out because I can for the first time in months. And if you want to see a sweet ass goat-tee you better stop by and check it out soon because it will be leaving soon. Before we get into that, this goat-tee is so freaking cool because the moustache part is ballin’. So if your interested in seeing the coolest moustache ever then you better stop on over to check it out. Well, anyway it will not be around long because chemo will be taking it all away again. I have already gotten my second round of my new chemo friend called Taxotere. I go three weeks on and one week off and this goes for a longer time because it is not as strong as the other stuff I was taking. Eventually, this crap will make me lose my hair again.

This is what I was writing before, so I decided to just keep it in here!

I guess normal is all relative to the people you are talking to or who your talking about. What I consider normal now is so totally out of whack that people who are normal don’t even know the life I live these days. People cannot even fathom that I go through what I go through because I had no idea 2 years ago when I was healthy. I had no idea that people were actually having to live a life like I am these days. I have doctor’s appointments once a month and along with all kinds of scans that I feel like are happening all the time. I have this back pain that I feel like will never go away and when any kind of pain occurs in my body, I have to first think cancer. For example, the past two days have been a bitch with scans. Yesterday I had to get a CT scan of my chest to see how the cancer in my lungs are doing. We hope there has been no change, but we do not not know as of now. Today, I had an incredibly long day. I will leave out what happened in the afternoon because that is the whole reason I have started this blog; however, I can gladly speak about my MRI scan I had scheduled today. We got to the hospital and filled out all the paperwork and were ready to go. As we were on our walk to the MRI room, someone who I will remain nameless, blurted out that I have a gold bar in my eyelid. After my original surgery, the docs put in a gold bar in my eyelid to help with closing that eye. I have never mentioned this for any of my MRI scans because I just don’t think about it at the time. Therefore, the nurse had to talk to the radiologist to make sure it was OK to perform the MRI. I had to get an X-RAY of my head to see where the piece of gold is. Check, got that done. Got the IV put in, check! Then, the radiologist said I was not getting the MRI done. They could not do it. So we had did all that for nothing. I eventually went back the next day to get it done, but come on.

9 Comments

  1. Jackie
    Posted September 10, 2011 at 9:31 pm | Permalink

    Oh Matt- I so hope you can be at MPHS this year. I realize that your mind wants to do what your body won’t let you, but I just hope that the procedure helps you and the back pain improves so that I can see you in the halls. I don’t understand the physical because I only had to watch it, not feel it, but I get the other stuff all too well. School kept me sane last year so hopefully it can do the same for you.
    Jackie

  2. Posted September 12, 2011 at 4:21 pm | Permalink

    Coucou Matt,
    Seems today was a shitty day… Hate when things are not smooth and seem like the never ending story.
    About your head wanting do do something and your body doesn’t let you: it’s a very hard balance, but respect your body. Change your mind. Find out new stuff that your body still allows you to do and do those. The rest of the stuff you’ll have to believe that you will be able to do them later on… Don’t be to hard on yourself… Sit back, have a laugh (or a good cry) and try to have little happy / peaceful moments each day. Even if it’s not your ideal day, I mean, even if you’re not living life as you wanted, living the day as you’ve imagined it. I really, really hope you feel better tomorrow 🙂
    Bisous,
    Silvina (aka TitaXana)

  3. Bob Stack
    Posted September 26, 2011 at 8:26 pm | Permalink

    This is a small note from a father who has experienced a bit of what you have these recent months and now are going through.

    I have visualized in my mind that you are getting better and this is just a difficult phase –

    Man you are strong – your strength will carry you through

    Visualize forward to those new groups that you have not heard, or to Bob Weir, Phish, Flaming Banjos – you will get there. I am looking forward to you and Derek checking out some of my favorite Jazz guys in the City very soon
    Best to you

    Derek’s Dad

  4. Posted November 22, 2011 at 12:42 pm | Permalink

    Dear Matt and his family,
    I am so truly sorry to learn that Matt has passed. I reached out to him in August after finding this blog. He joined ihadcancer.com – social support network for anyone touched by cancer – at my request. We have exchanged a few messages back and forth and the last time I heard from Matt, he were doing alright. Since I did not speak to him for a while and did not get a response to my messages, I checked here only to learn that he is no longer with us. Rest in Peace Matt. You have changed lives, lived yours and influenced mine. I thank you for the lovely pictures and words you leave behind – thank you. -Liz

  5. Kathleen Sayles
    Posted November 22, 2011 at 11:07 pm | Permalink

    Hi Liz, I don’t know if you will read this or can view it because I don’t totally understand Matt’s blog but I wanted to try anyway. This is Matt’s mom. Thank you for your kind words. I think that Matt told me about you. Are you out of the US somewhere? Matt had a rough time of things and we couldn’t stop the crazy cancer but I know in my heart that he is okay now. He touched so many many lives and he will be missed by so many. I wish you all good things and peace. Can I log on to ihadcancer.com and message you??
    Sincerely, Kathleen

  6. Posted December 5, 2011 at 8:54 pm | Permalink

    Coucou Matt and his family,
    I don’t know what to write. I’m 29 years old and was diagnosed with this stupid salivary gland cancer at 27. I’m still fighting it, with mets in my left lung and lymph nodes. Matt continues to be an inspiration to me, I often think of him and I was hoping for him to post more posts here on the blog. I had surgery 2 weeks ago (for my lung), and today I open his site and read this sad, sad news. I’m so sorry. I will keep coming here, and see his pictures and read his words. I regret not having known Matt sooner. For a brief moment he touched my life, and that will last for the rest of my life. Thank you Matt. Big hug and bisous from France.

  7. Kathleen Sayles
    Posted December 5, 2011 at 10:08 pm | Permalink

    Hi Silvinia Matt spoke to me about you. I hope your lung surgery went well and that things are okay. Are you going to have more chemo? Matt was doing so well and then things went so crazy. Matt went into the hospital on September 21st to have his lung drained and then he never got better. He was on a respirator for about 45 days. Very sad and he is so so missed. How did you meet or should I say start communicating with Matthew? Is there anything that I can do for you? We have just started a The Matt Sayles foundation for Salivary Gland Cancer to raise awareness on this stupid rare cancer. Do you have a web site? Thank you for posting. I log on to his site everyday just because. It was so nice to see your post. I am sorry that you had to hear about Matthew in this way. Keep in touch. We went to Paris for the first time last year. Where are you from in France
    ?? Hugs, Kathleen, Matt’s mom

  8. Posted December 9, 2011 at 4:31 pm | Permalink

    Hi Kathleen, it was nice to have your message here, I hope you are doing ok. My lung surgery went well, and I’m now doing radiation, three more weeks to go… Not to the lung, but to deal with a lymph node. I loved the idea of the Matt Sayles foundation for salivary cancer. I would like to know more about it! If you want you can write me at:
    episodiosderadio[at]sapo[dot]pt
    and we could talk some more 🙂
    Hugs, take care, and bisous from Paris

  9. Kathleen Sayles
    Posted December 30, 2011 at 10:15 am | Permalink

    Silvina
    Iposted to yourblog but I am not sure that it went through. Please email me at ksayles@gmail.com if you have a moment

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