October 11, 2010
Long time no update
Hi all,
I’m not sure if anybody is still signed up to receive updates from my blog, but I thought I would post one out here just in case. I know its been a long time and the good news is that I really haven’t had much to write about…so I haven’t!
I’m pleased to report that there is no bad news to report now either. A lot has happened since my last note, and I thought I would take a moment to write about it all.
First off, in June I did indeed run in the Warrior Dash. It was a blast. Actually, it really met the tagline of “Craziest frickin’ day in your life”. My father-in-law, Jerry, and my buddy Chris and I ran it. We had a ton of fun while getting covered with mud. The best part (not) was the fire hose at the end to clean you off. Imagine 50 or so people covered with mud and huddled together trying to get clean while being shot with freezing cold water coming out at 100 mph. What’s not to love?
Here’s a picture after the event:
Flash forward to September when I had my 6 month checkup. Everything is CLEAN! I’m looking good and there is no sign of recurrence! Whoohooo! I had a CAT scan and blood workup and then met with my regular Oncologist and my Radiation Oncologist. Both of them gave me the thumbs up. I will meet with them regularly every 6 months or so for the next few years. Hopefully, the results will continue to be the same.
Since all of this started right after I ran the Chicago Marathon last year, I decided to train for one more marathon just to prove I could still do it. I was definitely a lot slower on a per mile basis, and the training was tough, but I did it. On 9/19 I ran the Fox Valley Marathon in 4:52:01. Interestingly, that time was 35 seconds faster than the first marathon (and my official slowest) back in 1999. So, I guess I can consider myself no worse for wear. I’m proud to say that was my 5th and hopefully my last marathon. I’m awfully tired of running. Now, I need to find something else to do to stay in shape.
The last piece of big news I wanted to share is that Renee is pregnant with daughter #3. Yes, that’s right I’m going to be the father of 3 girls. Ohboy…what have we done?! We are very excited and anxious to get through the next 20 weeks (she is now about 20 weeks along). The baby is due in late February.
So, that’s my update. Things are going well in general and other than being crazy busy all summer, I have nothing to complain about. Feel free to comment to let me know if anybody is still reading this. Take care.
-Joe
April 20, 2010
THANK YOU!
Well, I can’t believe that this saga is about over. Its been a crazy and strange 7 months. I’m incredibly grateful to so many people for all of your kind words and deeds throughout this adventure. Now that I am cancer-free and finished with the treatments I wanted to wrap up with a few words of thanks. Before I begin, I want to caveat that if I forget anybody, please forgive me. One of the beautiful things about an online blog is that previous entries can be revised. So, if I did accidentally miss somebody, please let me know so that I can be sure to thank him or her properly.
First of all, thanks to Renee, my wonderful wife, for all of her support and love through this process. She had it the hardest as the “caretaker” who can only sit by and hope for the best while I went through this. I know it was an extremely difficult and emotional time and I am thankful for all of your help from making phone calls, to my chemo goodie bags, to letting me sleep when I needed to, and for putting up with all of my ups and downs. Thank you honey, I love you!
Thanks to my parents who diligently came every other Thursday and watched the girls while Renee and I went to my chemo sessions. Also for all the concern and phone calls. You did a lot of research on my behalf and helped me get through this process with the love and concern that only parents can.
Thanks to my in-laws, Jerry and Carol for so many things. Renee and I love having you over as often as possible and your help throughout this process has been immeasurable. Of course, all of the work that you have done on the house as well as all of the time you spent with us has been fantastic. I am lucky to have such wonderful people in my life. Included in the wonderful in-law category are Grandma Nina and Grandpa Glenn. Thanks to both of you for the ever present love and support.
Thanks to my brother for all of the phone calls throughout this process and of course, for coming to stay for a few days and go to chemo with me. I can always count on you and I am grateful. I only wish we lived near each other so that we could see each other regularly. Along those lines, thanks to Kari for sending Dan to visit and for all of your supportive emails, phone calls, text messages and pictures etc. I look forward to seeing you both soon.
A big thank you to all of my “chemo buddies” who included:
Renee (of course), Josh, Dan, Lynda, and my father. You all got to see me during some of the roughest times and have an intimate knowledge of how fun it is (not) to be injected with poison. Thank you for taking good care of me.
To Anne W.: Thank you so much for all of your wonderful advice when things were crazy. You were a huge help with both Renee and I in getting organized and understanding what we were going through. In fact, you get full credit for the idea of starting this blog. Thank you!
Thank you To Cousin Dana and Cousin Sue: You were my biggest fan club on the blog and via email. I really appreciate all of your insights, humor, and support.
To the ladies in the western burbs (Tobey, Jaime, Sarah, Christina, Betsy, Shannon, Tara, Natalie, Stephanie, Kathie, Carrie, Jenni, Gail): You are an amazing support group. You all were so kind and helpful throughout this process from making dinners to lending an ear to taking care of Renee to watching the kids. Thank you immensely.
To my neighbors Todd & Greg: Thank you so much for helping with the yard work, snowblowing, and all of your offers to assist. You guys are wonderful neighbors and good friends.
To my Florida fan club (led by Grandma Jan & Grandpa Steve): Although many of you don’t know me, I have been told how much love, support, and prayers you have sent my way and I am grateful. Thank you! Steve – thanks also for all the witty comments on the website. Funny stuff! Don’t worry, we’ll be taking advantage of the free room and board soon.
To the huge list of people who have been active on this blog: Thank you so much! I have truly enjoyed writing it and it really made the experience easier by knowing you were all out there reading and commenting. I’d like to specifically call out all of you who have posted:
Josh & Sheri, Chris & Sue, Brad R., Larry H., Walter & Gloria, Jami T., Lois W., Tara W., Dan G., Jim & Pauline, Barb K., Bob L., Joyce C., Sherry S., Diane H., Vince C., Dick & Harriet, Ken B., Beth C., Marsha D., Grandma Jan & Grandpa Steve, Aunt Pam & Uncle David, Cousin Rachel, Gautam S., Lance C., Jason H., Michael E., Jerry & Jenny, Ryan L., Matt B., Andy H., Julie K, Erik & Vanessa, Michelle T., Gail S., Mickey & Lorraine, Deb T., Amy B., Tim C., R.J., Mike S., Gail & Ken, Heather P., Ellen & Wally, Nancy V., Falshunnee B., Clair B.
To my work colleagues: A giant thank you for being so compassionate and sympathetic throughout this process. I received a ton of support and was treated extremely well at work. I am grateful for that.
Finally, thanks to all of you who helped shave my head back in November. Good times that I plan to never repeat. I’ll be happy, however, to return the favor. Ha!
As I said before, I hope I remembered everybody, but if not, please forgive me and please let me know.
April 14, 2010
4 Scars and 7 Months Ago
I can’t believe its been about 7 months since all of this began and now the journey is about over. I’m thankful that it has all turned out well, but its still hard to believe.
I am now done with radiation and am just waiting for the side effects to clear up. I apologize for not having posted much during the last few weeks. Fortunately, things went pretty smoothly. The only major side effect is trouble swallowing which after the whole tonsil episode is rather frustrating. I’m told it should clear up within the next 2 weeks. After that, I should feel pretty much back to normal. I will have a lot of follow up checkups and tests over the next several years, but that shouldn’t be too big of a deal.
Now that its about over, the question is: what now? I’ve definitely been taking stock of my life and trying to look at the future differently. Truthfully, I haven’t been able to picture much differently. I’d like to think this changed everything, but I’m not really sure it did. I welcome any thoughts from all of you.
April 2, 2010
Getting There
I am more than half done with Radiation and so far so good. To be honest, I haven’t noticed any side effects yet. Supposedly they will start showing up any day now, but its been a breeze so far. Thank goodness for that.
Everything else has healed up pretty well and I feel pretty normal. Even my hair seems to be coming in pretty well. No complaints about that.
March 25, 2010
Warrior Dash
I’ve been going back and forth trying to decide what I should do with myself after this is all over. I was pondering running another marathon and once again raising money for the Leukemia and Lymphoma society. I also thought about running a triathlon. Both of which would be good, but as fate would have it, I found the ultimate event to participate in: The Warrior Dash. Also known as the “Craziest frickin day of your life”. Here is a quick explanation:
“Warrior Dash is the ultimate event for thrill-seeking athletes. This running series is held on some of the nation’s most demanding and unique terrain. Participants will conquer extreme obstacles and celebrate their feat with music, beer, warrior helmets and muddy shorts.”
Check it out at www.warriordash.com. I am signed up for the Midwest (Joliet) event on 6/20 at 10:30. In fact, my father-in-law, Jerry, has even signed up to participate as well. My friend Chris B. as well. I think Sheri A. is going to join us. How about you? I’m hoping to get as many crazy people as possible, so for those of you with adventurous spirits, please sign up ASAP. If you use the promo code “crossfit” you can save $5 off the price.
Renee claims that she will run it if I get 10 other people to join, so hopefully that will be enough incentive to get you to join as well. Definitely let me know if you are going to make it.
Ray-D-8
Today is day two of Radiation. It took a while to start because of the port surgery, but yesterday was finally the first day. It was pretty much what they told me to expect: I felt nothing. It took about 15 minutes total and then I was out of there. Today was the same thing.
The process involves me lying down, shirtless, with my arms over my head. They center a laser beam on a little dot that has been tattooed to my chest and then leave the room. This giant disk is lowered about 10 inches from my chest and then it makes all sorts of noise, rotates around, and zaps me. I don’t feel or see anything. Its a strange thing, but thankfully pretty easy. They tell me that I will probably start noticing side effects in about a week or so. Mostly, a “sunburn” on my chest, loss of hair, and some minor trouble swallowing. Some people don’t get any symptoms, so we’ll see what happens.
A few weeks to go and then I’m done (for good!) I’m looking forward to the end of all this, but its hard to complain given how well the treatment worked and the fact that I’m cancer-free now.
March 17, 2010
Ex-ported
Yesterday my port was removed from my chest. Finally! I am glad to see it go. They graciously gave it to me to take home and I am still trying to figure out what to do with the dang thing. The surgery wasn’t a big deal but they did knock me out for it. I was a little sore afterward, but today I hardly feel a thing.
I was supposed to start radiation today and I went to the doctor this morning for my treatment. They lined everything up and decided that we should wait another week for the port surgery to heal properly. The scar from the port is just on the edge of where the radiation will hit and they decided its better not to mess with it. So, that means I have a small reprieve before the fun begins again. Although I am anxious to get it over with, I think this is good because I am still trying to get past the sore throat from the tonsillectomy. So, hopefully by next week my body will feel pretty normal and I can finally get the last part over with.
March 15, 2010
What do I have in common with illegal immigrants?
We’re both getting deported! Ha ha. I just received word that I can have my port removed. It is scheduled for tomorrow morning. Whooohoooo. I can’t wait to get this thing outta me. They even said I could take it home in a gift box. Any thoughts on what to do with it?
March 14, 2010
Feeling much better
My throat is finally feeling a lot better. Sheesh, that was a lot worse than I ever expected. It still hurts to talk too much and eating is tough, but now its more like an average sore throat. Thank goodness. A few more days and I expect it to be back to normal….just in time for the radiation side effects to kick in.
I am planning on scheduling the removal of my port as soon as possible. I will call the doctor tomorrow and if he gives me the green light, I want to get that done ASAP as well. I can’t wait to have that thing out of me. Truthfully, it doesn’t bother me much anymore, particularly because nobody is messing with it, but I still will be happy as can be to have it gone.
Lastly, I am back to being bald as of yesterday. My hair had grown in a ton, but it really is quite different then it used to be and didn’t look very good (in my opinion). So, I said heck with it and shaved it off again. I’m hoping that it will grow back more normal this time. Renee, however, is digging the bald look so we’ll see how it goes.
March 12, 2010
Planning Session
I had my planning session this morning at the Radiation Oncologists office. Pretty much just another CAT scan and some photography to figure out how to line me up for the upcoming zapping. I will have my first session on Wednesday and every weekday for about 3 weeks. The process doesn’t sound too bad. I’m just hoping that this stupid sore throat will be healed by then.
My throat is slightly better today than yesterday and I’m trying to lessen the use of the painkillers. Its definitely still rough though. I read online that it should start easing now so I hope that is the case.
March 11, 2010
1 Month
Today is officially one month since the last day of chemo. Thank goodness that is over. It’s also one week since I had the tonsillectomy. That, unfortunately, is not over because I am still in a lot of pain. Its unbelievable how much it hurts, particularly first thing in the morning. I don’t know how much longer the pain will last, but I’m already on my 3rd refill of the pain meds.
Yesterday I met with Dr. Bendre (Radiation Oncologist). I am going back tomorrow for the “planning” session which will basically be when they set up the computer for my specifications. Once I am “programmed” in, then all my future sessions will be a quick 10 minutes or so in and out. He expects me to go through about 3 weeks of radiation which will be every weekday. The major short-term side effects are loss of hair in the area radiated (my chest and neck), difficulty swallowing (ugh), and some redness (like a sunburn), and potentially some fatigue (not nearly as bad as chemo).
The first radiation session will be probably Tues or Weds next week and if my calculations are correct, I should be all done with the radiation the first week in April. At that point, I can heal up and hopefully never think about this stuff again!
As thrilled as I am to be cancer-free and finished with chemo, its been hard to celebrate because my throat has hurt so badly. The pain meds are supposed to last 3 hours but after hour 1 it starts getting sore again and by hour 3 I am in major pain. However, as I’ve said this whole time, “it could be worse”. I am thankful that I am about done, and that my prognosis is excellent. I am also thankful for all of you who have been so supportive, helpful, and kind. It means a lot to me. Thank you immensely!
March 9, 2010
Results are in!
My tonsils were cancer free! Whooohoooo! I believe that means that I am officially cancer-free! Double Whooohooo! I still have to go through radiation but I’m not complaining.
March 8, 2010
No results yet
Still haven’t heard back about my tonsils. However my throat is still extremely sore. Will update more when I hear from the doctor.
March 7, 2010
Still sore
I didn’t realize how painful having my tonsils removed was going to be. It’s been four days and it still hurts to talk. Even with the drugs. Ugh! Well, I think its getting a little better and hopefully I’ll be out of the woods on this one in a few more days.
I think that I should get the biopsy results back tomorrow. I’m hoping to hear from the doctor and will post the news as soon as I know something. Keep your fingers crossed.
March 4, 2010
Tonsils, tonsils on the wall
If this blog’s tagline was “my journey to be tonsil-free” I could claim victory. My tonsils are no longer attached to me but I will always remember the good times we’ve had together. Especially that one romantic evening back in ’45. But I digress…..
The surgery went well. No problems. I am in bed with lots of liquids and ice cream trying to recuperate ( and type this on my iPhone). I feel fine other than the fact my throat is KILLING me. I’ve never had a sore throat so painful. Even the codeine they gave me barely helps.
After the surgery was over Renee spoke to the doc and his (unofficial) opinion was that the tonsils were not cancerous. That would be fantastic news, but I won’t get the results back from pathology until Monday.
I’ll post more when I hear back. Thanks to all the well wishers. I truly appreciate it.
March 2, 2010
Surgery Update
Thanks for all of the notes of encouragement! I truly appreciate all the well-wishers out there.
My tonsils are coming out on Thursday morning. I’m not sure when I’ll get the results back from the lab, but probably not until the following week. Hopefully that will be the end of all the fun (besides, of course, the radiation). I have to go on Wednesday morning for a physical with my regular doctor so that I can be cleared for the surgery. I’m sure that won’t be a problem, but just one more Doctor’s appt to add to the list. Thank goodness for health insurance! I broke through the deductible in January and will probably max it out for the year this Month. Yippeee!
March 1, 2010
Additional update
I went to see my ENT tonight. He took a look at my tonsils and decided that they need to come out ASAP. Most likely they are cancerous (although we won’t know for sure until the biopsy comes back). After a little googling I realized that tonsils are part of the lymph system and it is not uncommon for lymphoma patients to have it spread to their tonsils.
I don’t know for sure how this will work, but I believe that there is a good chance that just removing the tonsils will take care of this last bit of cancer. The news from earlier today is still good in that all of the rest of the cancer is dead, but obviously it is concerning that it may have showed up in my tonsils.
I have to call in the morning to schedule the surgery (most likely on Wed or Thurs) and I will also need a week or two for recovery before I can start radiation. I’m hoping to get that going sooner rather than later, but I guess we have to take it one step at a time.
Results are in!
Just got back from the Doctor after hearing the results of all my tests. Everything looks great. All of the tumors have shrunk significantly and nothing showed up “hot” on the PET scan. That means the cancer is all dead and the chemo worked! Fantastic news.
There is one slight complication which hopefully isn’t going to be anything to worry about. I have an enlarged tonsil that showed up hot on the scan. This most likely is caused by bacteria (ie strep throat) and might mean I need my tonsil out. Of course, there is a chance it is cancerous as well, but my Doctor didn’t think that was likely. I made an appointment to go see my ENT (the same one who started all of this fun) to have him scope it. Hopefully I’ll hear quickly what it is and put this concern to rest.
Its still great news about the cancer, but its hard to celebrate until I know what’s the deal with my tonsil. I’m hoping I’ll just have to have it removed and get to eat a lot of ice cream!
I also need to make an appt with the Radiation Oncologist to find out how much radiation he is going to prescribe. I am going to call in a few minutes and hopefully get in ASAP to get that process going.
I’ll write more as soon as I know more.
February 25, 2010
More testing
I had my lung test and PET scan yesterday (Wed). According to the tech (unofficially of course), the lung test looked pretty similar to the one I had back in October. So, that most likely means that the drugs did not have any adverse effects on my lungs. Good news there.
The PET scan tech didn’t give me any results, however, he did give me a CD of the slides which I, of course, looked at when I got home. I had received a CD from the first PET scan and could pretty easily tell where the cancer was (Black spots around my chest/neck). This CD, unfortunately, showed a different type of image so it was hard to discern what I was looking at. The good news is that I didn’t see any black spots at all. Obviously, this is not any sort of official diagnosis, but a very positive first impression. I have to wait until Monday to talk to the Doctor about the official results, but I am pretty optimistic that the chemo worked well.
Assuming all is good with my PET scan, I am most likely cancer-free, or just about at this point. WHOOOOHOOOOO! I still will go through radiation because that significantly decreases the likelihood of cancer returning in the future (and believe me….I don’t want it coming back!)
February 24, 2010
Testing 1.2.3…
Monday I had my first set of tests which included 2 CTs, a MUGA (Heart), and an EKG. This morning I had my lung test and this afternoon is the PET scan. That is the big one because it will show if the tumors have shrunk/disappeared. I won’t get the official results back until I meet with the Doctor on Monday but I am pretty confident that all will be good. After that, I will begin Radiation which should last 2-3 weeks. I’ll post the test results as soon as I know them.
February 17, 2010
Back to Normal
Its been almost a week since my final chemo and I am feeling almost back to normal. I still have a few lingering side effects, but am slowly but surely feeling better. I am very pleased that it is behind me. This week will be quiet since I am just going to take the time to recover. Next week the tests begin and then soon after I’ll start radiation. Should be about a month or so and then I’ll be completely done (hopefully!)
February 12, 2010
No Mo Chemo
That’s it! Its over. Yesterday was my (hopefully) final chemo session ever. Thank goodness. It was less than pleasant to be honest, but I made it through and am happier than you can imagine to be done. Renee was going to go with me but Molly had a mishap and had to go to the doctor (she’s okay) and so my Dad went with me instead. We had a good chat and other than a few rounds of heaving into the garbage can, the time went pretty quickly.
Its Friday morning and I am feeling okay considering. I should be back to normal by Monday or Tuesday and am really looking forward to that. Regardless, I am done!
February 10, 2010
Last Round!
Well, tomorrow is a big day. The last (hopefully ever!) round of chemo for me. I am looking forward to being done I can tell you that. I’m not looking forward to tomorrow, but thank goodness it’ll all be over soon.
In about a week or so I’ll be feeling back to normal and happy that the chemo is behind me. Two weeks from today, I have my PET scan which will, I fully expect, show that I am in good shape and that the cancer is gone. Then, most likely, a few weeks of radiation and I am done for good! Whooohooo!
Now, if I can just make it through tomorrow without tossing my cookies I’ll be a happy man. Either way…at least it’ll be over by around 4:00 pm.
February 5, 2010
Chemo Supremo
Less than a week to go before the final chemo. I can’t wait for about 2 weeks from today when I am done with chemo and feeling normal again.
I am feeling pretty good these days, but the last 4 or so nights have not been able to sleep well at all. I can fall asleep but not stay asleep. I’ve avoided taking my sleep meds because I would prefer not to use them if I don’t have to. They really seem to mostly only help me fall asleep anyway and since that’s not my problem, I don’t know that they’ll be real effective anyway.
The rest of the side effects seem to be going away for now. I know have a pretty good grasp on what I will feel and when and it seems like the treatments are getting more consistent which makes it easier for me to deal with the aftermath.
My hair has grown back and although its a bit finer it still is pretty much all there. It turns out that I probably didn’t need to shave my head after all, but I don’t regret doing it since it was stressing me out.
February 2, 2010
Home Stretch
It is now Tuesday and I am a little over a week away from the last round of chemo. Thank goodness. I can’t wait to be done.
I have now scheduled my PET scan and other tests for the week of 2/22 and should know the results by 3/1 the latest. I am hoping to get my hands on the scans (they gave me a CD last time) and look at them at home. Even though I can’t make an official diagnosis, I think I will have a pretty good idea of what has changed from the first scans.
My latest side effect that is really bugging me is the smell of windshield wiper fluid. I can’t use it in my car because it wafts through the vents and makes me nearly gag. The main reason, I believe, is because it reminds me of the smell of the stuff they numb my port with before sticking me for chemo. Honestly, just typing this is making me fell ill.
So, I think now is a good time to stop typing.
