tag:blogger.com,1999:blog-24245056749771018522024-03-13T20:09:47.872-04:00Meningioma- our storyJenny and I have decided to use the 'internets' to share and provide timely updates about the history, diagnosis, treatment, and our personal observations about this condition. We want to use this forum to keep friends and family updated as Jenny prepares for surgery (Feb. 12, 2009) and also provide support and knowledge to others who are facing a meningioma (brain tumor).Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.comBlogger111125tag:blogger.com,1999:blog-2424505674977101852.post-5811767127351371192010-02-13T21:59:00.004-05:002010-02-13T22:27:07.109-05:00Happy Craniversary!It's been about 3 months since I've written, but I'm back on the blog because yesterday was the 1 year anniversary of the craniotomy! We celebrated by going out to dinner with some friends, and we had a great time. And we're also getting ready to go on a mini (warm) vacation. Life can't get much better than that!<div><br /></div><div>So to get you updated on what's been going on the past three months, here's a rundown:</div><div><br /></div><div>1. I started going back to work. I'm probably working around 15 hours a week (and answering emails most times even when not in the office), so that's excellent news. I definitely try to keep my 'off days' when I don't go into the office very low key.</div><div><br /></div><div>2. My love of reading has only increased. When I came home from work before surgery, I was quite content camping out in front of the TV. Now, I LOVE crawling into bed and reading some Sookie Stackhouse! I even read sometimes before I get my day going in the mornings. And I always read before I go to bed.</div><div><br /></div><div>3. I started working out again. Then stopped because I was just so tired all the time. Now I'm back at it. The most I really like to do is 20-25 minutes easy on the eliptical. But I am doing my Yoga, and I absolutely love it. I'm up to about twice a week.</div><div><br /></div><div>4. Kevin and I got through the holidays. I really didn't think they would be hard, but they were. </div><div><br /></div><div>5. I discovered The Twilight Series. I blame Kevin for this. I was already obsessed with the vampires because of the True Blood series on HBO. He encouraged me to get the first book of the Twilight series when we were at Wal-Mart doing some Christmas shopping. I read them all in record time (see #2). I still think that Eric and/or Bill could kick Edward's ass. But I love them vampire stories!</div><div><br /></div><div>6. I had my most recent panic attack on a plane 2 weeks ago. Kevin was with me and it was more to do with messing up my schedule than anything else, but I still do get panicky and weepy at times. But it's getting better.</div><div><br /></div><div>7. I now liken myself to a baby. You mess up my eating or sleeping schedule - or throw in a long dinner with friends, or a lunch. Or anything where I have to do a lot of talking. And it is bad news. (see #6) </div><div><br /></div><div>8. I went to Boston to see a neuroendocrinologist at Mass General, more to just get a second opinion on why I can't gain any weight and to check hormone levels. The trip was grinding (I met my mom out there, but had to fly there myself). But it was worthwhile. My thyroid is working well, but they emphasized that I need to get my T4 checked every 6 months (as opposed to having a TSH test). I have signs of hypothyroid but not enough to warrant putting me on anything, especially because it could cause me to lose weight. Not what I need right now. Oh, and I slept 14 hours when I got home (see #7).</div><div><br /></div><div> </div><div>9. My hormones are really working to normalize. I'm hopeful that things sort out on my own. Go body, go!</div><div><br /></div><div>10. I've got 3 different haircuts! Basically, the left side is normal and darker. Most of the right is very fine blonde, with white wiry hairs sticking out. And I have a backwards "L" shape on my scalp that has still yet to fill in. Needless to say, this whole hair growing out thing is taking FOR-<i>EVER</i>. I guess it's to be expected when the beam was concentrated right below the surface of the scalp. But it's really pissing me off!</div><div><br /></div><div>I won't be gone this long again! I've got another MRI coming up, and I'll post the results here!</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com10tag:blogger.com,1999:blog-2424505674977101852.post-53350367071160366362009-11-08T22:14:00.004-05:002009-11-08T23:07:18.976-05:00Major MilestonesIt's been two weeks of major accomplishments for Jenny! A great show at the Vogue last week (Pete Yorn!) and an NFL game. And while they were both pretty loud, I was able to handle it all! If you had told me two months ago - heck, even one month ago - that I would have done these two things, I would not have believed it!<div><br /></div><div>ALSO...drumroll......I officially went back to work on Thursday! Granted, I'm only going back two days a week for half days, but it's better than nothing. I'll gradually work my way up in hours. I am so lucky to work for a boss that is so accommodating. Truly, he is the best. And I am so lucky to work with some fantastic people who are patient with me as I ramp up my hours! Wow, wow, wow!<div><br /></div><div>When I got home on Thursday, I slept for a good hour. And I still have trouble being on the computer for long periods of time, but that's ok. It felt great to be out in the real world again. And not thinking about a certain cat named Clyde...</div><div><br /></div><div>Speaking of ....the last post mentioned that he had been sick. Well, we had to take him BACK to the vet. Yes, it was the vet ER. And yes, it was a Sunday night. Talk about another hit to the pocketbook. Long story short, he had to have surgery. But we're still not sure exactly what's wrong with him. All we do know is that his intestines were "accordian - like" where they should have been straight. So, the vet went in and straightened them and thought he would find something stuck in there. Nope. I think we just got a defective cat.</div><div><br /></div><div>Seriously, he could have just irritated his tummy with the plants, he could have Inflammatory Bowel Disease, or he could have parasites, or he really could have just been defective! Time will tell. But we DO know that he is a much, much happier kitty and is getting better every day. He has about 20 staples (he's just like his mommy!) that are healing nicely. He's eating, keeping it down, getting frisky, and using his box like he should. The problem now is that he thinks that just because the first 3 or 4 days after surgery he had to have a bland diet of cooked salmon and chicken, he should be eating that all the time. It's a battle of the wills here in the Siminski household. Just tonight he decided that his regular food IS good enough after all.</div><div><br /></div><div>You know, it's funny. Both Kevin and I commented on how stressful Clyde's surgery was for both of us. We've been through so much this year, and you would think that this wouldn't be a big deal. The same thing came up when I was talking to one of my friends this summer. She was telling me about her daily struggles, and then commented, "Well, it's not as bad as what you're going through and I feel guilty for talking about it when you've got so much stuff going on." </div><div><br /></div><div>But what I've come to realize is that just because something doesn't seem "as bad as" something else, doesn't mean that it's any less stressful! What my friend was going through - that was real life, and that was HER life. And it IS big deal, no matter how big or small the issues are. </div><div><br /></div><div>I can't really articulate clearly what I'm trying to say, but we've all got our crosses to bear every day. It could be a brain tumor, a sick pet, a broken heart, a child that insists on only eating chicken fingers and corn, a bad cold, a sore back. One of my new perspectives this year is that when someone pisses me off, or makes me sad, or whatever, I just try to remember the scenarios above and have a little more compassion and understanding.</div><div><br /></div></div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com0tag:blogger.com,1999:blog-2424505674977101852.post-62648686787278544972009-11-01T19:50:00.008-05:002009-11-01T20:25:44.136-05:00Upstaged by a cat!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwgJKwUJVEw0S4yvkSOZ-18HMtRYzeh8o3yGGq3QQcawfmx3Hry8soXknpmE8mGsSWJxdwJ09X2dmePr_F_5eYoKqexXfq37OBc-4JTQhF8BN2-ABkA2bwzVTWyZcT0QllCkYisMEcT9A/s1600-h/IMG_0060.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwgJKwUJVEw0S4yvkSOZ-18HMtRYzeh8o3yGGq3QQcawfmx3Hry8soXknpmE8mGsSWJxdwJ09X2dmePr_F_5eYoKqexXfq37OBc-4JTQhF8BN2-ABkA2bwzVTWyZcT0QllCkYisMEcT9A/s200/IMG_0060.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5399303970377605586" /></a><br />It's been a while since I have contributed to the blog so I figured I would hold up my end of the deal and update everyone. First, anyone out there ever consider pet insurance? After our weekend, it's something we are considering! Unless there are pre-existing condition clauses in pet insurance. If a pre-existing condition of eating plants is a strike then we are screwed. But after spending $1,600 on our little clyde for two nights at the Kitty hospital for a potential bowel obstruction it might be worth the investment. Maybe Congress will throw pets into the public option! <div><br /></div><div>Clyde decided that our tropical banana plant would make a good dinner and he could not stop himself from eating it all day on Thursday. So thursday night he started puking and would not stop. So after watching him on Friday, we decided it was time to take him to the vet. After X-rays and such, they determined there was a questionable area and off to the kitty hospital. He came home Sunday Morning and did not have to have surgery. But we are continuing to closely monitor him. Seriously, can't I just get a break. First, I have to worry about Jenny going through two major brain surgeries and crazy side effects of medication and now I have to worry about my wife's constant companion! I just can't wait for 09 to be done with!</div><div><br /></div><div><br /></div><div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 167px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPJlCJI5e6n3vBYSSlJK1GngrRyLA1pjJwSL_SmxGqqorCGtnjjzjmAIdMcqrA3GHkLNFIUD1kwfSmysnl2cX6rAmfIeDymtCskmMCMzUKy64HjGYnAd6lHY2eWYzTT_UF1RPZqNDGGQE/s200/Normal+brian.0001.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5399305804194880450" /></div><div>Now for the good news. Jenny had 9 month MRI this past week and everything looks perfect (MRI picture from 10/28/2009). No swelling, which is a concern 4 - 6 months after radiation and no recurrent masses!</div><div><br /></div><div>What a year this has been. Two months ago, it would have been hard to look to future and say things are going to get better. My wife was a MESS. The walls came crumbling down when she went to her parents in South Carolina for what should have been R&R. Instead, a frantic call from her mother started a series of calls with her Neurologist and Radiation Oncologist to get the medication issue resolved. After looking through the drug manufacturers literature I was convinced that Jenny was experiencing serious side effects from both Keppra and Lyrica- severe psychological instability, muscle pain, extreme exhaustion, complete lack of appetite. Almost 48 hours after stopping Keppra, my wife was seriously a different person. She was starting to have break throughs of her original personality! She has slowly improved and just last week, we even saw Peter Yorn at the Vogue her in Indianapolis. This was the same girl that would yell at me if I had the TV up too loud a couple of months ago! </div><div><br /></div><div>For the caregivers out there, the only thing I can tell each of you is to have patience. Yes, it's stressful but at the end of the day everyone responds differently to treatment. I was a shoulder to cry on almost everyday. My goal was just to be as supportive as possible BUT there were a few times that I had to remind Jenny that she was going to be okay. I was not going to let her fall into the rut that she was disabled or not going to recover. I knew and believed that everything would get better. Of course, I am an optimist!</div><div><br /></div><div>So hopefully this begins the next chapter in this wild and crazy story...</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com2tag:blogger.com,1999:blog-2424505674977101852.post-11501442002381537372009-10-19T21:01:00.004-04:002009-10-19T21:53:35.318-04:00Quick post, Life's GoodThe last 3 weeks or so I've been getting back to normal. It's very nice. I'm totally off Keppra XR and Lyrica. And I haven't felt this good in a long, long, long time. <div><br /></div><div>So, since I last wrote, I had an EEG. That would tell the doctors if I was having any seizure activity. I'm happy to report that I ROCKED it!! Turns out that my doc down at MPRI was right all along. At the end of my treatment down there, he more than hinted that he didn't think my issues were related to seizures. He did sorta hint that it was probably more of a medication issue. He's a brilliant man.</div><div><br /></div><div>So, Kev and I went earlier this month for a follow-up with the new neurologist (I really, really, really like him). That's when I got the news that my brain is awesome (normal EEG). Now, that doesn't mean I'm off scott free with the drugs. I am now on a low dose of Trileptal. Very low. But I feel normal, have no numbness. No weird dreams. No shortness of breath. I guess I just can't take the high doses of these drugs. And Trileptal is a relatively "oldie but goodie" seizure med.</div><div><br /></div><div>All I know is that I am actually plotting my return to work. I have been walking. I actually did some very light free weights and machines at the Y yesterday. I'm trying to add some muscle, because putting on weight has just been such a challenge. </div><div><br /></div><div>I get tired and cranky very easily, though. But the anxiety - it's not totally gone (especially when I overdo it), but I can't even begin to tell you how much better it is. </div><div><br /></div><div>All in all, I am a totally different person than I was this time last month, when I tearfully (and honestly!) declared to my mom, "I think I need some serious psychiatric help. I might have to go away for awhile." It was all the drugs. That is totally scary.</div><div><br /></div><div>Kevin's up to bat next with his version of my total mental and physical breakdown with the next post. It should be a goodie! Stay tuned.</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com2tag:blogger.com,1999:blog-2424505674977101852.post-88694934883318155302009-09-30T19:58:00.006-04:002009-09-30T20:26:18.861-04:00Crazy Walks Back InCrazy walked back into the Siminski household. Well, crazy has been in here for quite some time. If you look back on my posts the past two months or so (actually, this entire meningioma journey!) you'll notice three distinct themes: crying, pain and anxiety.<div><br /></div><div>Turns out I WASN'T supposed to be weeping uncontrollably every day and having anxiety attacks. I didn't know that's what they were at the time.</div><div><br /></div><div>So......after a horrible flight to South Carolina where I met my mom with sobs, I continued crying the entire trip. It was bad, it was scary. I couldn't do anything. I couldn't eat. I was sleeping all the time. Everything made me cry. It scared me and my mom. So bad that on the Monday I was in S.C., my mom had to call Kevin. He called the doctors. Turns out I had a very, very bad emotional and physical side effect of Keppra XR, which had been prescribed (for various reasons) just about a month before. Well, the timing of the South Carolina trip coincided with the drug fully loaded into my system. I guess it happens to about 1 in 5 patients on this drug. I think the generic keppra was doing the exact same thing, but just not quite to the dramatic extent that the extended release was. (Hence, my anxiety - although I didn't know that it was that - during the entire radiation treatment.)</div><div><br /></div><div>It was so bad, that my mom had to escort me back to Indiana on Tuesday (my original departure date). She was able to get on the same flight as me, thank goodness. Within 72 hours, my mood, appetite, etc. were dramatically better. But it wasn't without yet another ER trip to get fluids in me because the withdrawal from the drug was rough, rough, rough. Geez! There was basically no taper. One night I had my usual dose. The next night half dose. Then I was done with it. I had to be. It was bad news.</div><div><br /></div><div>Now, the same time I started XR, I also started Lyrica for some slight nerve pain I had been having. Wouldn't you know it, about the same time I went through the Keppra Crazies, I started developing debilitating muscle pain. I thought I just pulled a muscle and was tense from just the sheer physical and emotional toll I had been through the last week. The pain didn't go away with time, muscle relaxers or some pain meds. That made me suspicious....</div><div><br /></div><div>I'm now tapering to see if I'm developing an extremely RARE side effect of Lyrica. It's exactly the same feeling I had when I was on Remicade and Humira (which both gave me the lovely side effect of drug-induced lupus).</div><div><br /></div><div>This is potentially the SIXTH pharmaceutical drug that has given me such bad side effects, I've had to stop it. </div><div><br /></div><div>Ah, the fun never ends. If I can just get all these medication issues fixed, I will be one happy camper. But seriously, the difference (just ask Kevin) between me the last 6 months and the me now is like night and day. </div><div><br /></div><div>PS: Understandably I have postponed the trip to Boston to see the endocrinologists until the beginning of 2010. I've got other stuff to worry about!</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com2tag:blogger.com,1999:blog-2424505674977101852.post-63150715408181200602009-09-09T17:16:00.004-04:002009-09-09T17:37:48.795-04:00Ups and DownsI didn't think this was how recovery was going to be at all. What is so frustrating is that this weekend, I felt better than I had in months. Over the past few days, it's all gone down hill, unfortunately. <div><br /></div><div>I've been doing research on thyroid issues and I'm pretty sure that I know what's going on with me. The good news is that I have an appointment out in Boston at Mass General with one of their endocrinologists since all the ones in central Indiana are completely out of their league with a patient like me. She's worked with Dr. Thornton to help other meningioma patients in the past, and I am hopeful that we can start to untangle a lot of stuff. I am convinced that either my thyroid/pituitary/and subsequent hormone imbalance are all related to the atypical meningioma, the Crohn's and the ankylosing spondilitis. Crazy, but I will explain more in a later post. Yes, I know that I am a difficult patient, but in preparing for this appointment (late sept) I've already uncovered a number of things that SHOULD have raised flags a long time ago. </div><div><br /></div><div>I'm also just generally uncomfortable sleeping. My screws are sore, which makes me lay on my left side more. That has gotten sore, too. And 3 out of 4 markers from the radiation are still quite sore, even more so after radiation is done.</div><div><br /></div><div>My new acupuncturist is really worried about the amount of energy that I have. And <a href="http://themeningioma.blogspot.com/2009/03/alternative-treatments.html">Jude is worried</a> that I haven't put on any weight. It's not that I don't want to eat, it's that I get hungry and then can't eat a bunch. Or I make something, and it's taken so much energy, that I'm then not hungry enough to eat a lot. </div><div><br /></div><div>I also think I had an anxiety/panic attack after a lunch with an old family friend today. Unfortunately, the place we went to was far too loud (for both of us), so there was waaay too much stimuli. Combined with the headache that I already had, I crumbled on the way home, and then took a 2 hour nap. The one thing she kept repeating to me is to take it one day at a time. But as I sit here typing through tears, it's hard to think that way. </div><div><br /></div><div>Okay, there is a silver lining to all my doom and gloom today. I'm getting a second opinion tomorrow from another neurologist to see if we can't do something with these issues I've mentioned throughout the post (plus another long list of symptoms).</div><div><br /></div><div>But the best news is that after the neuro appoint, I'm heading down to South Carolina tomorrow to spend 5 quiet, relaxing days with my mom. I'm even going to meet another meningioma patient - who just happens to live down the street from her. I think all this will help me out. I just want to dip my feet in the sand and the surf, and I think that will help my soul. </div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com6tag:blogger.com,1999:blog-2424505674977101852.post-69208024765514258422009-08-26T20:47:00.006-04:002009-08-26T22:25:59.837-04:00Bittersweet WeekI woke up to the news this morning that Sen. Ted Kennedy succumbed to his brain tumor. I immediately burst out in tears. Not because of his politics, but because he was a fellow brain tumor patient.<div><br /></div><div>At MPRI I had the fortune of meeting a young man about 2 years younger than me. He had the <a href="http://www.google.com/hostednews/ap/article/ALeqM5hQbofKlLJJvdYVdaEPRprqhsNLHQD9AAOK684">same type of malignant tumor</a> (glioblastoma multiforme) as Kennedy. As opposed to a meningioma - even an atypical meningioma, a GBM, as they are commonly referred to, is NOT the kind of tumor you want. This young man had already been through 2 surgeries, full brain radiation, and was in the process of completing his course at MPRI. Then he told me he was going to try an experimental vaccine that prods the immune system to fight the cancer. I believe that Kennedy had done the very same thing. I believe there was at least one other GBM patient while I was at MPRI.</div><div><br /></div><div>What sticks in my mind with this guy was how normal and patient he was. His dad was with him everyday and you could tell this guy was under stress by the look on his face. His son, on the other hand, was the complete opposite. </div><div><br /></div><div>I think about this guy a lot, but today especially it's hard. I've been crying on and off all day and I really wonder how he's doing. Whether he's got the vaccine. What his prognosis is. But for the grace of God, I could have been him. </div><div><br /></div><div>On top of this, I met with Dr. Henderson, my Radiation Oncologist up here in Indy today. I was already emotional given the whole Ted Kennedy news today. I tried not to tear up, but I did when talking to him, the intern, and a tech intern (at least I think that's who she was) about how the beaming went. This is the first time I've seen him since the end of treatment, and he did most of the gruntwork in plotting out my treatment, so it was an emotional meeting for me. We also talked about some of the lingering issues (besides being so damn emotional), which is always hard to talk about, which made me cry even more. It's so embarrasing to not have control over your emotions. It's those last 10 treatments - they really knock you down. He said that happens with a lot of people. The first 28 or 30 treatments are a breeze, and when you go over that, you really do put your body in a place that not a lot of people have been. It's a pelting to the brain and everyone reacts differently.</div><div><br /></div><div>I did learn that the intense pain that I'm feeling by the screws from the craniotomy is the result of the beams being more "focused" on these areas, and it's not uncommon to have more pain around the "hardware" in your head. That makes me feel better. And he gave me something to help with the pain, which is good. The good news is that he said "in a few months, you will feel a lot better. You've just got some more healing to do."</div><div><br /></div><div>To top everything off, though, I had to renew my driver's license because mine expired in June. I didn't even know this until I was at the airport going to Maine. So yesterday, my mom and I went. I looked up on the BMV site to see what they were going to do, and according to the site, all I had to do was a vision test. No problem. As long as I didn't have to get a new picture.</div><div><br /></div><div>Well, wouldn't you know it. The lady helping me said, "just step over here and we'll get your photo." I was mortified. Luckily, she took me to the FAR camera setup. I hemmed and hawed for a few seconds, and then I said to her, "I'm literally missing half my hair. Do I HAVE to get a new picture, or can you use the old one?" She said no, and that I even had to take off the scarf. And you know the BMV. By this time, half the place was looking over at me. So I took the scarf off and sucked it up. I mean, I have to have a valid license for a number of things. And now I have a daily reminder that my head looks like it does. Great. I'm totally mortified. </div><div><br /></div><div>Not a great week for Jenny.</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com4tag:blogger.com,1999:blog-2424505674977101852.post-12750155707215048682009-08-22T20:16:00.003-04:002009-08-22T20:34:42.534-04:00Maine<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMg8jEp13tQxeqdUszGOYXcpucDfUVj_l6DFOA8Dc8BgEJOMBgRFGLT_fBbXE-fhb1-5_24K8Y3SDNJDHcwJi3UGsaHxxHXW0SlokwLABlJIU5bcjeCAIzzDgDOFhjXv2q9j-d4eSjvNA/s1600-h/IMG_5398.JPG"><br /><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMg8jEp13tQxeqdUszGOYXcpucDfUVj_l6DFOA8Dc8BgEJOMBgRFGLT_fBbXE-fhb1-5_24K8Y3SDNJDHcwJi3UGsaHxxHXW0SlokwLABlJIU5bcjeCAIzzDgDOFhjXv2q9j-d4eSjvNA/s200/IMG_5398.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5372948671235501474" /></a><br /><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>Kevin and I just got back from 6 days in Maine, and what a difference it has made. Yep, this is me on top of one of the 'mountains' in Acadia National Park! We took it pretty easy, but the trip was well worth it - it helped get me out of the monotony and helped me regain confidence. We spent 2 days out of the 6 hiking. I wish it could have been more, but I was exhausted, and it was bloody hot. In the '90's!! </div><div><br /></div><div>Acadia, and Bar Harbor, ME are beautiful. It would be awesome to be out there one month or so from now when all the leaves are changing. </div><div><br /></div><div>I'm feeling pretty good right now, but my head is finally healing so I am feeling the screws in my head again. And getting some headaches - especially on the flight back. I'll have more updates this week, but I thought everyone would enjoy this picture!<br /><div><br /></div></div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com3tag:blogger.com,1999:blog-2424505674977101852.post-29740886109347482472009-08-12T21:17:00.004-04:002009-08-26T22:28:59.941-04:00Not So Smooth SailingHaven't posted much here lately because it hasn't been such a smooth ride lately. Emotionally and physically it's been an extremely difficult and challenging period of recovery from this atypical meningioma. I have added a new drug to the mix - Lyrica - to help deal with the tingling on my entire left side and the pain on the left side of my skull. The good news is that it's helped, at least with the tingling. The bad news is that it makes me very tired and I look like I am a total drunk, at least on the higher dosage. <div><br /></div><div>I'm going back down to MPRI tomorrow for another MRI and a 4 week follow-up. I will be happy to see all the folks down there, and especially happy to talk with Dr. Thornton about all the crushing, defeating side effects that I'm having. </div><div><br /></div><div>That's about all for now. </div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com1tag:blogger.com,1999:blog-2424505674977101852.post-90172190473311982342009-08-03T11:51:00.003-04:002009-08-03T11:54:57.976-04:00Helpful LinksI'll add more.<div><br /></div><div><div>Here's a story about MRPI. Check down at the bottom, and you'll see me quoted. Grade II patients - this will be helpful for you.</div><div><a href="http://www.midwestbusiness.com/news/viewnews.asp?newsletterID=19700">http://www.midwestbusiness.com/news/viewnews.asp?newsletterID=19700</a> </div><div><br /></div><div>Meningioma Mommas</div><div>Great source for anyone who has a meningioma or is taking care of someone with a meningioma. They are currently revamping their site, but any questions you have, this board is filled with patients and caregivers who are willing to help. You'll need to register (it's easy and free) to participate on the boards. And they won't use your stuff for anything else.</div><div><a href="http://www.meningiomamommas.com/phpBB3/">http://www.meningiomamommas.com/phpBB3/ </a></div></div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com0tag:blogger.com,1999:blog-2424505674977101852.post-26880674205035443082009-08-03T11:31:00.004-04:002009-08-26T22:30:35.571-04:00Neurology Follow-Up<div>Well, I couldn't even make it through 3 minutes meeting with my neurologist, Dr. Snook, without crying. Actually, I think the guy felt pretty bad for me. Even with being done with the Decadron, I'm still having anxiety problems! And, on top of it, I had bad swelling and pain/drainage in my right ear from the atypical meningioma, which if you will recall, ended up getting part of the beam on it. It hurt back at the end of June and then when we redid the fields, the ear canal wasn't part of them. But I almost immediately had to go on Decadron anyway, so it probably hurts now because I was weaning off it. Now I have some ear drops from Dr. Snook and all is better. Geesh!</div><div><br /></div><div>He's helping me with the ear, and we've added Lyrica to the mix. Apparently, it's good for nerve pain (I've been having sharp, stabbing pains in my head every now and then). But even more annoying, it's hard to sleep on my right side. It's like it's completely bruised and it feels like there's some pressure there. Lyrica is also good for seizures, which should be a good backup to the Keppra. Hopefully Lyrica isn't something I have to be on long-term. I really hope not. The less drugs the better.</div><div><br /></div><div>Here is an example of a recent day: I went to acupuncture last week, and then got a bite to eat with my mom. We were going to do some shopping for some new drapes. But I just couldn't bring myself to do it. It's so exhausting and overwhelming at the same time. That's the only way to describe it. And it happens every day, at some point in time. I'm even tearing up right now just thinking about it. It's just very hard to explain.</div><div><br /></div><div>I feel like every day is Groundhogs Day. I try to get outside and walk, and I'm good for a certain period of time, then I'm done. And when I'm done, I'm totally done. I told Dr. Snook we were planning on taking a trip to Maine in the middle of August. And while I'm totally excited to get away - we NEED to get away - I am petrified of traveling. Of noisy airplanes - and worse - noisy airports. I told him that I just want to get something that will help me not crawl in a ball and cry in the corner. I've got some drugs and some earplugs, but I'm seriously thinking of investing in some Bose noise reduction earphones. It would also be good for work, too.</div><div><br /></div><div><br /></div><div><br /></div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com1tag:blogger.com,1999:blog-2424505674977101852.post-8272299398727578342009-07-23T19:59:00.017-04:002009-07-23T21:10:28.063-04:00Top TenHere's my top 10 list of events related to the meningioma. With 1 being the worst. This might surprise you.<div><br /></div><div><a href="http://themeningioma.blogspot.com/2009_04_01_archive.html"><b><span class="Apple-style-span" style="color:#6600CC;">1. The Hematoma</span></b></a></div><div>By a mile, this 'complication' was by far the worst as far as recovery <i>and</i> as far as life threatening-ness. (Like that word?!) Remember, the original meningioma (brain tumor) was there for probably years, if not decades. The fluid that built up <a href="http://themeningioma.blogspot.com/2009/04/bump-in-road.html">6 weeks after surgery</a>, while not covering as large an area as the tumor, built up <i>quickly</i>. <a href="http://themeningioma.blogspot.com/2009/04/who-knew.html">And kicked my ass</a>. The whole story around it was more dramatic, and the recovery from the surgery was much more intense than the original craniotomy, if you can believe that. There's nothing that compares to this one. Visit the links above, or the links from April 2009 posts for a trip down memory lane with me.</div><div><br /></div><div><b><a href="http://themeningioma.blogspot.com/2009/06/my-brain-is-fried.html"><span class="Apple-style-span" style="color:#6600CC;">2. The last 10 proton beam treatments</span></a></b></div><div>Proton beam radiation, while in theory has less side effects than other forms of radiation, can still kick your ass. I learned the hard way. La-di-da, all was going well. Then right around mid June (around treatment 28-ish)...BAM. And it's <i>still</i> kicking my ass.</div><div><br /></div><div><a href="http://themeningioma.blogspot.com/2009/02/dreaded-decadron-taper.html"><b><span class="Apple-style-span" style="color:#6600CC;">3. The First Decadron Withdrawal - after the craniotomy</span></b></a></div><div>Decadron sucks.</div><div><br /></div><div><b><a href="http://themeningioma.blogspot.com/2009/02/headaches-and-hallucinations.html"><span class="Apple-style-span" style="color:#6600CC;">4. The 12 Days Before the Craniotomy</span></a></b> (Hey, isn't that song?!)</div><div>The anticipation. The medicine side effects. The calls from well wishers who sounded like I was off to a death march instead of getting a surgery that I really did need and really wasn't dreading. It was just a weird time.</div><div><br /></div><div><b><a href="http://themeningioma.blogspot.com/2009/02/some-more-pictures.html"><span class="Apple-style-span" style="color:#6600CC;">5. The Craniotomy, including the hospital stay</span></a></b></div><div>Bet you thought this would be up earlier on the list. It's not, probably because I was so focused and prepared for this, unlike anything else that's come up over the last 6 months. As far as pain and recovery and fatigue: I wasn't really in that much pain, because I couldn't feel anything for at least two weeks after cause of all the anesthesia. And I got to sleep for as much as I wanted. And I didn't have to clean out the kitty litter. And I didn't have to cook or clean. And I was kind of in a cool fog, like a dream, most of the time. That was kinda cool. </div><div><br /></div><div><b><span class="Apple-style-span" style="color:#6600CC;">7. (Tie) </span></b><a href="http://themeningioma.blogspot.com/2009/02/goodnight.html"><b><span class="Apple-style-span" style="color:#6600CC;">Seizures</span></b></a><span class="Apple-style-span" style="color:#6600CC;"> and </span><b><a href="http://themeningioma.blogspot.com/2009/03/greetings-everyone-kevin-is-back-on-job.html"><span class="Apple-style-span" style="color:#6600CC;">Learning I had a Grade II meningioma</span></a></b></div><div>Seizures right after the craniotomy, <a href="http://themeningioma.blogspot.com/2009/04/seizures-again.html">right after the hematoma</a> and lingering through radiation treatments. They are being addressed, but any way you slice it, seizures suck.</div><div><br /></div><div>Going into Dr. Shapiro's office to get my staples out I thought I was home free. Then he drops the bombshell on me - Grade II (atypical) meningioma. It should have been a happy day, instead I was totally blindsided. <a href="http://themeningioma.blogspot.com/2009/02/im-gonna-glow-soon.html">Now I had to deal with phrases like 'radiation oncologist'</a>. Ick. </div><div><br /></div><div><b><span class="Apple-style-span" style="color:#6600CC;">8</span><a href="http://themeningioma.blogspot.com/2009/04/more-poking-prodding-and-radiation.html"><span class="Apple-style-span" style="color:#6600CC;">. Marker (Fiducial) Surgery in preparation for Proton Beam</span></a></b></div><div>I actually could move this up as a 3 way tie. It was because I had the marker surgery 3 weeks after having the hematoma surgery. And 2 surgeries in a month is hard on the old bod. If I had this surgery done any other time, it probably would have been much easier. I had lots of swelling and pain that I wasn't anticipating. It's different for everyone, but for me, it really was painful. </div><div><br /></div><div><b><span class="Apple-style-span" style="color:#6600CC;">9. </span></b><a href="http://themeningioma.blogspot.com/2009/07/vacuuming-plants.html"><b><span class="Apple-style-span" style="color:#6600CC;">Decadron during Radiation</span></b></a><b><span class="Apple-style-span" style="color:#6600CC;"> and </span></b><a href="http://themeningioma.blogspot.com/2009/07/adjustment.html"><b><span class="Apple-style-span" style="color:#6600CC;">Post-Radiation Blues</span></b></a></div><div>See post about my other <a href="http://themeningioma.blogspot.com/2009/07/vacuuming-plants.html">Decadron experience </a>towards the end of radiation. And I'm still continuing to struggle with radiation effects after radiation is done. It's a lot harder than I thought it would be. I definitely have good days (like today) and days where it's hard to think and be around people and I generally don't feel well and am very fatigued. This will get better, but it will take time.</div><div><br /></div><div><b><a href="http://themeningioma.blogspot.com/2009_01_01_archive.html"><span class="Apple-style-span" style="color:#6600CC;">10. January 2009</span></a></b></div><div>Leading up to the diagnosis and final confirmation of the meningioma diagnosis was an ordeal in itself. My husband is the best in the world.</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com1tag:blogger.com,1999:blog-2424505674977101852.post-39294248240420538992009-07-17T15:10:00.004-04:002009-07-17T15:30:13.417-04:00AdjustmentWow, what a difference a week makes. I can't really follow-up to Kevin's post other than he hit the nail on the head with how great everyone is at the Midwest Proton Radiotherapy Institute. They are amazing, terrific and any other kind word you could say about them. I do get to see them in a month for a follow-up, so I'm not going cold turkey on them!<div><br /></div><div>It's taken me quite a few days to sit down and do an entry because I'm still struggling with restlessness and/or anxiety from the damn Decadron and am very, very, very sensitive to noises. (Which is probably a combo of the Decadron and the complete pummeling I took from the radiation.) But it IS getting much, much better.</div><div><br /></div><div>I'm still very 'into' cleaning, although I am happy to say that the plants are safe - at least for now. And this should keep getting better as I continue to wean off the Decadron. I told Kevin earlier that I feel like an 80 year old all the time, because 3/4 of my day I spend bitching about how loud one thing or another is. The TV, the cats, the cars idling very quietly outside, the low music playing at the restaurant, the construction trucks about a half mile from our house. You get the picture. I try and venture out at least once a day, but I can't explain it any other way than it is just mentally exhausting. It's really quite funny. Seriously. It IS funny.</div><div><br /></div><div>One thing that has surprised me is that I am actually seeing some swelling around my forehead. Weird. I guess it's just mirroring what's actually going on in the noggin. But I look slightly Vulcan right now. </div><div><br /></div><div>So, this weird adjustment period continues. It's almost like I don't know what to do with myself, but there's not a lot that I really CAN do for at least a couple of weeks. </div><div><br /></div><div>That reminds me, Kevin's t-shirt drawers (yes, there's more than one) are calling my name....</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com0tag:blogger.com,1999:blog-2424505674977101852.post-33662956324215968262009-07-11T22:53:00.003-04:002009-07-11T23:01:17.052-04:00Before and after polariods...<img style="cursor:pointer; cursor:hand;width: 256px; height: 256px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2A0R0SeNCd_HAWZ3BWUe58wnNDaU5tajYULnspnbvvmkrzThEIJrEffTGLtDpqQwW60pMXto4c8HLejbEm0UK5r9La4q2JeB2ZjB_iiirKs2l4j-U51vx3-maAwKDfItkPDkZ2a-E9cc/s320/men5.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5357401844179859650" /><img style="cursor:pointer; cursor:hand;width: 320px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiURSXz6sw2b6by0u4dAkvMYyXYPzruhogsRFTUREYYADoBLYZlFTd3JSYpUz_GSa2dkg2TvyvfZSiAo4l2JPVpU3AI2j7WQcDnUL7PVSvMNG2bMWrPKWiDRLnTXsfGICY-oDcMhzFIH4/s320/0001.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5357402630024235666" /><br /><br />Her are the before and after shots! The first image was taken in January, 2009 and the last image was taken June 26, 2009. <span class="Apple-tab-span" style="white-space:pre"> </span><div><br /></div><div><br /><div><br /></div><div><br /></div></div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com0tag:blogger.com,1999:blog-2424505674977101852.post-33067498830561346482009-07-11T22:14:00.003-04:002009-07-11T23:04:49.811-04:00My thanks<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb8hqi3A_ZFnsn7ILNe3gAFV5QShGZDcRZ6CYyfSLr4tB_85FiF4g9Feb9v9mciqSiE6k6nm5dYQ5zfakZjjEQKxPAK6ggVWqD-Ire-WHP2VEj6HP2TMeQToaZ0OU79ArmO3282imhu-E/s1600-h/IMG_0011.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb8hqi3A_ZFnsn7ILNe3gAFV5QShGZDcRZ6CYyfSLr4tB_85FiF4g9Feb9v9mciqSiE6k6nm5dYQ5zfakZjjEQKxPAK6ggVWqD-Ire-WHP2VEj6HP2TMeQToaZ0OU79ArmO3282imhu-E/s320/IMG_0011.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5357391790875689106" /></a>Kevin here! Who knew what a ride we were in for. This incredible journey began on January 16th, 2009 and a major chapter of the book closed on July 10th, 2009. Jenny completed her final treatment at the Midwest Proton Radiotherapy Institute (MPRI) on Friday! Her first treatment was on May 14, 2009. She had a total of 38 fractionated proton beam treatments. Her total dose was 68.40 cge's. While I could not take her down for every treatment, I was there in spirit cheering her on everyday. My mother-in-law, father-in-law, Father, great friends Laura and Paul Avgerinos all helped with the daily transportation. I could not be more thankful for all of the help! <div><br /></div><div>But really, my thanks goes out to all of the wonderful folks at MPRI. In the picture above is a small portion of her treatment team. If I could have taken a picture of everyone I would have but they were helping others in need of their special care! These folks are the true hero's, they make all of the difference in the world. My wife would tell me stories every evening about her team and what was new that day. Her physician at MPRI, Dr. Allan Thornton (in the tie), is a true pioneer and a gifted physician. His research on the use of proton therapy has undoubtably touched countless patients and the impact of his research will live on for generations. But the real hero's are the radiation tech's and the nurses that handle the day to day care at MPRI. They are all saints in my book! They touch the life's of so many each and every day.</div><div><br /></div><div>So now begins the next phase of this journey, we are not sure what we are going to do with the blog but we have a few ideas! Don't worry, it's not going away! Thank you everyone for your thoughts and prayers throughout this entire ordeal!</div><div><br /></div><div>Kevin </div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com0tag:blogger.com,1999:blog-2424505674977101852.post-57567307647421745652009-07-09T20:45:00.002-04:002009-07-09T20:47:34.957-04:00The Final CountdownOne treatment left. No tears shed for a couple of days now. I'm actually totally stoked for tomorrow! <div><br /></div><div>We'll post some celebration pics tomorrow or Saturday at the latest.</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com2tag:blogger.com,1999:blog-2424505674977101852.post-21512028076400506352009-07-07T11:01:00.003-04:002009-07-07T11:17:52.107-04:00Vacuuming the PlantsFirst things first, not done with the treatments yet! Friday, July 10 should be the day. Since Kevin wrote the previous entry, I had to take a couple of extra days off to help settle down swelling. As you know, that didn't work. And I've been a hot, steroid mess since then.<div><br /></div><div>Last Sunday and Monday were great. I got lots of stuff done. By Tuesday (one week ago today), things were going downhill fast. By Wednesday, after a nightmare, surreal trippy ride to Bloomington with 3 - yes, 3, of my family members, I was a basket case. Too much conversation. Too much stress. Too much stimulation. Too much pre 4th of July traffic. </div><div><br /></div><div>After showing up at MPRI that day at my wits end, I was tapered down from the Decadron a notch. And we were given strict instructions for the rest of my visits - 1 patient, 1 driver. That's it.</div><div><br /></div><div>That taper went well for about a day, until I got into the cleaning frenzy mode over the holiday weekend. And anxiety. And more anxiety. I was washing windows inside and out, cleaning out crevices with with the handheld vacuum. Cleaning behind the dusty TV. I was even giving the plants a vacuuming! As Kevin said, "you are exhausting me". (Poor Kevin, if only I was this clean all the time!)</div><div><br /></div><div>So, I went to MPRI yesterday waving the white flag, big time!! Went down again on the 'roids and have something that might help calm me down. It hasn't so far, but with the extra drop with the 'roid dosage, I should be a little more even keeled...maybe...hopefully??</div><div><br /></div><div>I should be happy for this week, but I just want to get out of there with at least a shred of dignity....or at least no more teardrops when they put that damn mask over my face. It's just frustrating to get this far, and then to crumble at the end all because of some stupid little pill. </div><div><br /></div><div>I am determined to go out right for the last 4 treatments...with a smile on my face. Cause that's how it SHOULD BE!!!!!!</div><div><br /></div><div>Check back in the next couple of days. As I start to realize how close I am to being done, I'm going to be in a much better - and funnier - place. After all, it's not like a have a huge tumor in my head anymore! I mean geez, Jen, get a grip!!!</div><div><br /></div><div>I hope that everyone had a fabulous 4th of July!!</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com0tag:blogger.com,1999:blog-2424505674977101852.post-84754893830867869682009-06-29T10:23:00.004-04:002009-06-29T10:35:38.941-04:00Open Letter to Decadron Part IIDear Decadron,<div><br /></div><div>I knew I'd see you again, you hulking steroid, you. After being in tears twice last week at restaurants because the noise was overwhelming, I knew I was in trouble. Then, after being in tears trying to arrange an unexpected MRI (and drivers down to Bloomington) on Thursday, I really knew I was in trouble. It was just too much for me to handle. And those who know me know that definitely NOT how I am.</div><div><br /></div><div>Then the headaches really kicked in hard. And I broke down and called MPRI. Now that I started taking you yesterday, here I am with headaches that are gone. But replacing them will be bone crushing aches from my back to the bottom of my heal. And night schweats. And then the dreaded decadron withdrawal when this is all said and done.</div><div><br /></div><div>I was wondering how I was going to make it through the next 8 treatments (I'm thisclose to being done!) without you, but I was going to try. So instead of wanting to take my time closing the deal with the proton beam to help manage my swelling, I'm now anxious, anxious to be done with you and the radiation. </div><div><br /></div><div>Atypical meningioma - from 6-8 weeks out of work to going on 5 months!</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com1tag:blogger.com,1999:blog-2424505674977101852.post-42051123391958769792009-06-24T20:39:00.003-04:002009-06-24T20:53:19.977-04:00My Brain is FriedWell, not literally of course. But I am on a 'break' for 4 days because of bad brain behavior.<div><br /></div><div>Yesterday, I had a chat with Dr. Thornton at MPRI. I had been noticing some irritating symptoms last week. Numbness in my left leg from the top of the thigh all the way down my foot, in my left arm, and general crankiness (what, me?!) and a feeling of just not feeling right, like I'm getting the flu.</div><div><br /></div><div>On Monday night, I had another one of those terrifying episodes where I thought I was going to suffocate in my sleep. Needless to say, I was not pleased and had a feeling I knew where this was headed. I also told him that I even had some numbing episodes on the left side of my back.</div><div><br /></div><div>He then proceeded to totally geek out (he was so excited, bless his heart!) about the <a href="http://en.wikipedia.org/wiki/Sensory_homunculus">cortical homunculus</a>. I add the Wikipedia link here because it is really cool. And now I'm totally geeked about it. It's basically a graphical depiction of the body within the brain. All my symptoms correspond pretty close to this picture, considering my tumor is on the top half of the brain. Check out the link - it's pretty cool! It also explains why I still haven't gotten sensation back on my left index finger. </div><div><br /></div><div>ANYWAY, bottom line is that I'm experiencing some swelling in the brain. It's totally expected at this point in time during treatment. So, we've decided that I'm taking the next 4 DAYS off! Normally, I would be pretty bummed, but I know that I need this time off. I just never recovered after last weekend, and considering I slept 12 hours last night, having some time off sounds like pure bliss. </div><div><br /></div><div>When I go back on Monday, Dr. T, along with Dr. Henderson, will have figured out the new fields. YES, this means that not only will I have had a break, my treatment area will be narrowed down for the last part of treatments. This should also make my brain happy. We're still gonna try to get 38 total treatments in, but it might take a little longer than expected. Which at this stage is just a-ok with me.</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com0tag:blogger.com,1999:blog-2424505674977101852.post-7015925337987499252009-06-19T23:15:00.003-04:002009-06-20T17:01:45.871-04:00The countdown... Monday July 6!Kevin here...<div><br /></div><div>Folks the final countdown is on! Jenny finished up here 27th treatment today at MPRI. Her Doctors finalized her final treatment count and she only has 11 more treatments (38 treatments, total dosing of 68 CGE's). Her last treatment will be Monday July 6. MPRI is taking their holiday on July 3rd, so she will make up that treatment on Sunday July 5th with one last treatment on Monday the 6th. I can't say enough about the professionalism and compassion the folks at MPRI provide. They are truly a wonderful gift here in the State of Indiana and the Midwest. We are truly fortunate to have access to this type of treatment protocol. I have not been able to go down during the week for her treatments but Jenny always comments on the therapy team and the fabulous job they do day in and day out.</div><div><br /></div><div>It's hard to believe that this entire ordeal started over five months ago but the end is in sight! I can honestly say this is the best I have seen Jenny feel in over a year. The changes were very subtle but her friend definitely made a big impact on her well being. I am just glad to see the spring returning to her step bit by bit every day!</div><div><br /></div><div>Take care Friends...</div><div><br /></div><div>Kevin</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com0tag:blogger.com,1999:blog-2424505674977101852.post-23768933744399378562009-06-17T22:09:00.003-04:002009-06-17T22:17:07.004-04:00One More View<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhBhYK9NrBQmqXNn1bKIh-e7YTzsSlO39U9sWn82AV1FDfjBTNrf8QjKvz4r51x9A0Vc2ZBQuflSFsgN72sRz6ffkDHVTzD7WojVFtMCzIdqH1srBbZr_91-nDPl9coZeDa9BEpCLGUSc/s1600-h/DSC01589.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhBhYK9NrBQmqXNn1bKIh-e7YTzsSlO39U9sWn82AV1FDfjBTNrf8QjKvz4r51x9A0Vc2ZBQuflSFsgN72sRz6ffkDHVTzD7WojVFtMCzIdqH1srBbZr_91-nDPl9coZeDa9BEpCLGUSc/s320/DSC01589.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5348484399945186722" /></a><br /><div>Here's a closer view. It looks greasy because I am putting vitamin E oil to help with the tenderness and pain. At this point in time, nothing really helps all that much. You can see closer towards the front one of the spots where I will probably permanently lose some hair. It's a small patch right now, but it's getting really burned. (Or at least it feels that way.)</div><div><br /></div><div>You can also see the scar where they cut the skull for the burr hole to drain the hematoma. It's about an inch or so above the ear. I can actually FEEL the round hole where they drained it. It's awesome!</div><div><br /></div><div>If you look closely at the very, very top of my scalp, you can see part of the scar from the original surgery that curves along the entire head.</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com0tag:blogger.com,1999:blog-2424505674977101852.post-53069284531114960092009-06-17T21:58:00.002-04:002009-06-17T22:09:37.645-04:00No Comb-Over Could Fix This<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKW9jKwc0811B8NuoYfYlkpGYyj0VnVNn_45qRA5h956gSjeC-JcoQmDP14hUqLvOwn9ZjWdJG4WkPHnvdY84FZdQ8TVHhjRoRWrbajPLlXP9-wuAZ5Bb6AXzJaDVsttw56ra8j34YSjM/s1600-h/DSC01588.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKW9jKwc0811B8NuoYfYlkpGYyj0VnVNn_45qRA5h956gSjeC-JcoQmDP14hUqLvOwn9ZjWdJG4WkPHnvdY84FZdQ8TVHhjRoRWrbajPLlXP9-wuAZ5Bb6AXzJaDVsttw56ra8j34YSjM/s320/DSC01588.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5348481872205402402" /></a><br /><div>It's the end of year 32 for Jenny. I'm turning 33 tomorrow! No better way to celebrate than by posting the latest and greatest picture for your viewing pleasure. It's a pretty sweet 'do, isn't it!?</div><div><br /></div><div>Note the redness and the precise line of where the hair loss starts and ends. The loss curves around my ear, but I still have some hair left at the bottom. That means I can wear a beret and you can't really tell that I have lost any hair at all. </div><div><br /></div><div>Of course, hats aren't as comfy as the silk scarves that I have. I like to wear the scarves sometimes because then people smile at me more...they feel bad for me, I guess! Kevin thinks I'm weird, but is it really so wrong to like it when people are smiling at you all the time (and holding doors open for you and stuff)?! Hey, I might as well enjoy the 'perks' of losing my hair while I can! </div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com0tag:blogger.com,1999:blog-2424505674977101852.post-55822219139505305842009-06-07T20:56:00.006-04:002009-06-07T21:24:34.326-04:00Hair loss and Soy<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6LgfJDT8cIR8MiyUDqdKpUC348x9fj8ukdHnBA9fePaL8S5OkApiuTvA0kgp0bIvFP3J3lgN_KZu-CPTCjPAkRtQwHMcpz5Vc0Ml9Ns2awBJ9ttTzm9oLOHpoW8QwBbxTPz_jN4nCkj0/s1600-h/DSC01587.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6LgfJDT8cIR8MiyUDqdKpUC348x9fj8ukdHnBA9fePaL8S5OkApiuTvA0kgp0bIvFP3J3lgN_KZu-CPTCjPAkRtQwHMcpz5Vc0Ml9Ns2awBJ9ttTzm9oLOHpoW8QwBbxTPz_jN4nCkj0/s320/DSC01587.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5344754567696822770" /></a><br /><div>Here's the sweetness that is my hair! Yep, I've lost enough that I'm walking around with a scarf on all the time in public. </div><div><br /></div><div>Onto a different topic:</div><div><br /></div><div>So, in addition to NO EXOGENOUS HORMONES for ever and ever (including anything for menopause, etc.), it has been recommended that I AVOID SOY. I have been doing this as best I can for some time now, as I've read that soy can have hormonal effects on the body. I THINK it has something to do with being antiestrogenic. When you have progesterone receptors, soy could actually feed the kind of tumor I had. At least I think that's the logic... anyway, I just know that soy can screw with your hormones. </div><div><br /></div><div>I have been leery of soy for some time, and having confirmation of this from a medical professional is all that I need to stay away from soy as best I can! There's still lots of debate in the medical world, but if the Medical Director at MPRI tells me to stay away from soy, you can bet there's a reason for it.</div><div><br /></div><div>The problem is that soy is, unfortunately, in about everything. Try finding a multi vitamin without soy. Try finding a protein bar without soy. TRY FINDING CHICKEN OR BEEF WITHOUT SOY AS A COMPONENT OF ANIMAL FEED (along with corn). That also means cow dairy like milk, cheese, etc. - that also has soy in it based on the feed of the cow. And 'organic' or no hormones added doesn't cut it. I found that out the hard way at Trader Joe's today- the T.J. branded-chicken isn't fed antibiotics, but it states clearly on the package that the chicken is fed a diet of corn and soy. So disappointing.</div><div><br /></div><div>(I know it's impossible to avoid soy all the time, so if you see me eating a chicken burrito from Qdoba, don't hassle me. My body type demands that I eat meat! And trust me, I'll be beating myself up the whole time I'm eating it. If I can at least manage my soy intake when I cook meals at home, that will be better than nothing.)</div><div><br /></div><div>And people wonder why girls are getting their periods at 9 years of age?! Seriously, this is a real concern. It's going to take a lot of effort to try and find meats that are from grass fed animals. Hell, I'll even take some that have corn as a main component of their diet. But while some people have corn allergies, the insidious thing about soy is the (increasingly known) effects on hormones. And you know who it's hurting the most? Women and girls! </div><div><br /></div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com5tag:blogger.com,1999:blog-2424505674977101852.post-14206433425716534602009-06-02T19:42:00.002-04:002009-06-02T19:51:19.053-04:00The Honeymoon is Over<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXm4g1kt0a2uchwKahiCQwCDK4QwXI42LUlEfjixCImr87iCwfErr999KGlQbeX3skaMAaKzQuELTlUFC_DQ_Z4Aijt6dfkPn5c3pLkIUR2vuY-T7IuHOzr9EKYGuoXKh4vo6ef-sjp6c/s1600-h/DSC01584.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXm4g1kt0a2uchwKahiCQwCDK4QwXI42LUlEfjixCImr87iCwfErr999KGlQbeX3skaMAaKzQuELTlUFC_DQ_Z4Aijt6dfkPn5c3pLkIUR2vuY-T7IuHOzr9EKYGuoXKh4vo6ef-sjp6c/s320/DSC01584.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5342880235993348130" /></a><br /><div>It's happening. The dreaded hair loss. My only conciliation is that I have been assured that most of the hair will grow back, except for a small patch where all three of the beams converge. Right now, though, the hair loss basically covers half of my head. Seriously. It is tender, sore and very itchy.</div><div><br /></div><div>But, I can deal with that, as long as at least some of it comes back!</div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com0tag:blogger.com,1999:blog-2424505674977101852.post-58691204347816856992009-05-28T20:05:00.002-04:002009-05-28T20:12:23.391-04:00No News is Good NewsI just realized that it has been a whole week without a new post. That is actually good - no new drama! Treatments are going well. Kevin just noticed tonight that I'm starting to get just a little redness on the right side of my face. Things will probably start to get uncomfortable in the next couple of days, so I'm just trying to appreciate feeling, well, not too bad at the moment.<div><br /></div><div>My days are pretty much the same. Try to get up at a decent hour. Get some food into my stomach. Then go down to MPRI. My appointments are usually somewhere between 11 and 1, although that can vary slightly. Then get something for lunch. Then get back home mid-afternoon and take a nap. After dinner I try and get some work done on the computer/check email, etc. But I've noticed that I really can't be on the computer much since starting treatments because it gives me a headache. So all of you who have written me emails...thank you! I have read them all and will get back to you as soon as I can!</div><div><br /></div>Kevin and Jennyhttp://www.blogger.com/profile/04854900195472016449noreply@blogger.com0