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.
January 29, 2010
One to go!
Yesterday was my second to last round of chemo! Whooohooo!
I met with Dr. Bayer first and had a standard checkup. I also found out about the next steps after the last round of chemo which will be on 2/11.
I will spend a week or so recovering from the chemo and then run through a similar battery of tests like I did before the chemo began. They’ll check my heart, lungs, and blood, and also perform both CAT and PET scans again. Best case scenario is that nothing shows up on the scans. Worst case is that something new shows up that wasn’t there before. Most likely scenario is that all of the tumors have shrunk or disappeared. Even in the best scenario I will still undergo a few weeks of radiation because without it, the likelihood of a relapse is much higher. The only question is what the dosage will be and that will be determined by what is still remaining that can be seen.
I also discussed using my arm instead of port with the doctor to receive the chemo. He was fine with that, however, when I asked his nurses they convinced me to go with the port. It didn’t work. As soon as they “plugged in” I threw up twice. Then I was fine throughout the rest of the treatment until it was time to go. Then I tossed my cookies again. Ugh. Well, regardless, that’s over for now. Just one to go! I can’t wait to be done.
I have most of my tests lined up for the week of 2/22. I still need to schedule the PET scan which should probably be on 2/24 (they only do them on Wed and Sat). That week will be a lot of poking and prodding, but its all better than chemo.
January 25, 2010
Post more often
I’ve been told that I haven’t been posting enough lately, so I am making an effort to try to post more often. The good news is that the main reason I haven’t been posting is because I’ve been feeling well and busy with other things.
I truly appreciate all of you out there who are reading my blog and sending your thoughts my way. I also want to send a special thank you to everybody who has posted comments. I love reading them, so please don’t stop. Feel free to post even if you don’t have much to say. If you need an idea of something to write, I’ve provided a few examples below:
1) Joe: I love reading your blog. I had no idea you were so articulate, smart, and dashingly handsome
2) Joe: You are my inspiration. How did I ever live a full life before your blog.
3) Joe: Seriously dude, get a grip. You’re really not that cool.
Of course, you may want to add your own variation, but you get the idea. Also, I need a new survey to post, so please send ideas my way.
In Cancer-related news, I am happy to report that one of the irritating side effects seems to have dissipated (at least for now). Yes, I’m talking about constipation. I know that’s probably more than you wanted to know, but its my blog and if I want to add a little potty humor, then I will darn it!
Uh oh…Molly needs me…gotta go.
January 24, 2010
Sunday Again
Well, another week has gone by and all is going well for me. I’ve generally felt pretty good and I’d say this round of chemo hasn’t been too bad at all. It seems like the worst part for me these days is the actual treatment itself, not the aftermath. After the last treatment, I managed to go see Avatar the next night and have dinner with friends the night after that. I sure hope the last two go as well.
For this Thursday’s upcoming treatment, I am considering using my arm instead of my port for the drip. The reason is that I can’t stand the port anymore and I think that is part of my “anticipatory” problem that I talked about before. They numb the port with a spray before inserting the needle and the thought of that makes me sick. The smell of the spray and the way it feels (it stings). When they start messing with that, that’s usually when I start feeling sick. So, I’m thinking that it might go a lot better if I just use my arm this time. It’s not as comfortable but if it keeps me from getting sick during the treatment, then it may just be worth it.
The reason they prefer to use the port is that the veins in your arm can get fatigued from too much use. Additionally, the medicine is pretty toxic and if they don’t insert the needle properly there is a risk of damage to your tissues. That being said, there are plenty of people who don’t use a port and are just fine. I think its worth a shot at least once.
January 17, 2010
Lazy Sunday
Its Sunday afternoon and I’m watching the Vikings/Cowboys game while loafing around. I’m feeling pretty good considering all. The last few days since chemo have been about average for me but things have gone by quickly and I am starting to feel more normal.
Renee and the girls are still in Florida and Dan just left so I am a full-fledged bachelor for the next couple of days. Huge thank you to my bro for staying with me and helping me get through everything. We had a great time together and enjoyed not doing a whole lot of anything.
Lynda and Dan came with me to chemo on Thursday. It was nice to have both of my siblings supporting me there. The chemo was a bit rough and I threw up a few times during the treatment, but like I said, I am through the worst of this round now and am one more step closer to the end. Two more rounds of chemo to go and then radiation. My last day of chemo should be 2/11 which is less than a month away. Thank goodness! I can’t wait to be done. I am anxious to get this port out of me as well. The doctor said I could probably do that soon after the last chemo treatment. Hopefully that will be the case.
The worst part about it at this moment is this awful taste that I get in my mouth. I can chew gum or eat a mint but it never really goes away. It makes me want to eat to get rid of the taste, but I’m not hungry. This usually goes away after a few more days so I just need to bare with it for now.
January 14, 2010
Finding Chemo
Once again, Chemo day has returned. Today will be treatment number 6. Only two left after today. Thank goodness!
Today my brother and sister will be entertaining me during the session. Dan came in from Connecticut to stay with me while Renee and the girls are out of town, and Lynda made the trek down here from WI. This is the first time the three of us have been together in a very long time. Last night we got together with our parents too which was the first time the five of us (sans spouses and children) have been together in an even longer time. Good stuff.
I’ve done my best not to think about chemo in the last two weeks and it seems to have worked. I’ve actually been feeling great the last week+. I’d have to say that I’ve probably felt more back-to-normal than at any other time since this started. It’s too bad I have to go back for another round, but that’s the way it goes.
I have lined up a few projects to keep me busy and get some exercise after today. Building the wall two weeks ago seemed to help get me through it so I’m hoping that keeping active will work as well this time.
January 6, 2010
Posting Blues
Once again, I’ve been lax with my blog postings. My apologies to all of you out there. Fortunately, I’ve been generally doing well, I just haven’t felt much like posting over the last week or so.
I had my most recent treatment (#5) on 12/30 and would say that I am pretty much back to normal today (1 week later). I’m feeling pretty good and it seems that the treatment recovery time is pretty consistent at 3-4 days or so. Everybody in my family has been healthy and getting sleep so that has been helping as well.
To get through this last round I wanted to find something to keep busy. So, my father-in-law started working on building out the basement. We put up a few walls over the weekend which was a lot of hard work, but a lot of fun. I did have to rest a bit during it, but I think it helped me to have something like that to do. Plus, we are making progress on getting the basement finished.
I will do my best to keep posting and keep everybody in the loop on how I am doing. I hope 2010 is treating everybody well so far.
December 31, 2009
New Years Eve Post
Happy New Years (almost). I don’t know if I’ll make it up til Midnight tonight, but I’m going to give it a shot. Yesterday was treatment #5 and today I am feeling pretty well considering. I actually just went out and snowblowed the driveway. Apparently I should use the snowblower as an indicator of how I am doing. Maybe I’ll rate it 1 to 5 snowblowers depending on how I feel. Okay, maybe not.
Regardless, I am doing well today. Yesterday was a little tough. At the doctor while getting chemo I actually threw up. That was the second time total throughout this process which is pretty good, but it surprised them because usually its after the fact. The reason, they believe, is that I have an “anticipatory” anxiety. So basically its the thought of chemo more than the actually chemo that turns my stomach. That has definitely been the case the last few weeks because anything associated (smells, the pills, the though of chemo) has really made me feel ill. I don’t know if there is much I can do about that until it is over, but I need to work on keeping my mind off it as much as possible.
Well, the good news is that there should only be 3 more treatments left. I am 62.5% done. Whoohooo! I can’t wait until this is over.
I hope everybody has a wonderful new year and 2010 is a good year for my family!
December 29, 2009
C3 T1
I am going back for another round of treatment tomorrow. As a reminder, I am scheduled for a total of four cycles which consist of two treatments per cycle. So, tomorrow will be cycle 3 (C3), treatment 1 (T1) and hence the title of this blog.
I haven’t posted much lately mainly because I’ve been busy with the holidays and happily feeling pretty good. Interestingly, the last round of chemo seemed to go pretty smoothly for me and I felt much better than the round before that. Hopefully, tomorrow’s treatment will also go smoothly. After tomorrow I should have only 3 more to go…..whoooohoooo!
I hope everybody out there has been enjoying the holidays and got lots of great presents. I know I did!
December 22, 2009
It Blows
Its official….my snowblower…well….blows! Its fantastic! Thanks Dad!
I got up this morning and was feeling pretty good. So, I took care of our driveway quickly and efficiently, and then moseyed over to my neighbors and took care of his as well. You gotta love it!
I am not quite 100% but feeling generally alright. I’ve got a lot of new side effects these days, however, including a big aversion to even thinking about the chemo. It makes me feel sick. On Sunday I had trouble taking my anti-nausea meds because it made my stomach churn as well. I also have this awful taste in my mouth that really never goes away. I’ve been chewing a lot of gum to help with that but that makes my mouth sore (outside of just the sores in my mouth from the chemo). I’m also constipated (in case you were curious). I still have a good appetite which is not a bad thing, but I definitely need to eat healthier. Lastly, I still have bouts of insomnia.
The interesting thing is that my hair is growing back pretty quickly. I now have a nice layer of peach fuzz on my head and it shows no signs of stopping. I guess we’ll see if that lasts. According to the chemo nurses the second cycle (remember there are two treatments per cycle) usually takes care of your hair and white blood cells. Well, so far both are doing well on me. Let’s hope it stays that way.
December 19, 2009
Still kicking
Its Saturday morning and I’m still feeling pretty well. I got up early to go to the Men’s cancer breakfast at the Living Well Cancer Center in Geneva with my friend Dmitriy. I’m pretty pleased that I feel fairly normal. I’m not sure what to make of it since last time was so rough. Well, I don’t want to jinx it by saying anything more.
December 18, 2009
The next day
I’m feeling much better than I expected today. So far it hasn’t been so bad. I definitely can feel some of the effects, particularly fatigue, but its more like a mild hangover than anything else. Now, if I (and the rest of my family) can avoid getting sick, this might just go by quickly.
December 17, 2009
In the chair
Here I am, once again, at the doctor getting my treatment:
I’m definitely not looking forward to it, but a man’s gotta do what a man’s gotta do. The nurse told me to ask Santa to give me a good Christmas. Sounds good to me!
December 16, 2009
Back at it
Sorry for the lack of posts over the last few days. Things, thankfully, have been going pretty well. I’ve been feeling good, and haven’t had much to write about. I am going back in tomorrow (Thurs) for round 4 of 8. As usual, I’m not looking forward to that, but at least it’ll be one more under my belt. The last round was definitely the toughest, so I am hoping that this won’t be as bad. Cross your fingers.
December 11, 2009
Weekend Update
Its the weekend! Yippee! I am feeling better today, but still not done with this cold (or whatever it is). I started on an antibiotic yesterday and it seems to be helping immensely. Here’s hoping I’ll be feeling pretty good tomorrow. All I need is a good night sleep (do you hear me Ella and Molly – I’m talking to you!)
Happy Hannukah to my Jewish friends and family.
December 9, 2009
Sweet Ambien!
I pretty much didn’t sleep at all again last night and I’m happy to say that the Doctor prescribed me Ambien to get some sleep tonight. The strange thing is that it is now 8:30 and I haven’t really felt tired all day even though I couldn’t have slept more than an hour or so. Regardless, tonight I plan to be in dreamland about 20 minutes or so after I finish this post.
I’m still dealing with this cold, but thankfully it really only seems to be a never ending runny nose. No other real symptoms so it definitely could be a lot worse. I’m taking tamiflu for that which also seems to help, but man would it be nice to stop blowing my nose every five minutes.
Insomnia
New symptom….insomnia. Its been a few nights and I just can’t seem to fall asleep anymore. I tried to nap today and couldn’t sleep then either. At least I am feeling a bit more normal today. I just need to get some sleep now.
December 8, 2009
Tuesday Morning
I am finally starting to feel human again. Sunday night was rough because the girls didn’t sleep again and I woke up feeling like a truck hit me. I barely made it to work in the morning and had to leave early to catch a short nap. On top of that I once again have a cold. I’m taking tamiflu per the doctor’s orders and it seems to work well. Last night was much better and I am definitely more awake today. I am, however, working from home since my white blood cell count is low and I don’t want to risk getting anything else right now. Ah what fun.
December 6, 2009
Feeling better
I’m feeling much better today but still not 100%. At least the Bears are winning!
December 5, 2009
Saturday
Still not feeling great today. Ugh! This round is definitely hitting me harder.
December 4, 2009
37.5%
Well, I am now mostly through the third treatment. Only 5 to go. Thank goodness! I have to say that this has been the hardest one yet. The last few days were pretty rough and I still am not feeling great.
Fortunately, I this round was on Wednesday, so I have an extra day to recuperate before going back to work on Monday. I think I’m starting t o feel better, but I definitely am not back yet.
I’ll try to write more tomorrow.
December 1, 2009
Round 3
Well, once again its chemo-eve. I am having the treatment a day early this week due to the Doctor’s office being closed on Thursday. The upside is that I will have a little more time to recuperate before going back to work on Monday. My friend Josh will be tagging along as my chemo buddy this time. Knowing him, it will make for an entertaining afternoon.
I gave blood on Monday at the hospital and am interested in seeing what my white blood cell counts look like this time. Hopefully, I’ll still be in good shape. I also am still battling a runny nose and a sore throat but I don’t expect that the Doctor will want to delay the treatment. In some ways I wouldn’t mind, but I guess its better to get it over with sooner rather than later.
The new hairdo (or lack there of) went over well at work the last few days. I even received a few compliments on both the hair and the hat (thanks Josh & Sheri). I’m glad I got that over with and don’t have to worry about the hair anymore. I’m even hoping it will fall out now so I don’t have to deal with shaving it off again (probably because I’m lazy!)
I’ll update tomorrow after the chemo and let you know how I’m doing. Thanks for reading.
November 29, 2009
Baldness Poll Closed
This poll is now closed. Click below to see the results.
The Eagle Has Landed
…and by eagle I mean bald eagle….and by bald I mean me! Yes, that’s right, I took the plunge and decided to shave it all off. It was starting to fall out pretty quickly anyway, and so we had a little “scalp Joe” party today to finish the job.
To see the entire scalping process watch this 4 minute montage that I posted onto YouTube. I put it together pretty quickly so its not the best, but you should get the idea.
Everybody drew numbers to determine the order of the scalping. Then they passed the clippers around until everybody had a turn. It turned out to be a lot of fun. Initially, we kept a Mohawk which surprisingly looked pretty good. I was tempted to keep it for work, but since it was literally a “hack” job, I decided to let everybody finish the job. Even Ella and a few other kids got a turn.
I was a little unsure of whether I would actually go through with it today, but my friend Larry actually shaved his head before coming over and after seeing him, I realized that it wasn’t going to be so bad. Thanks Larry! That really did make a difference and put me more at ease.
Before all the fun began, my friends Josh & Sheri also took me to Gander Mountain and bought me a pretty sweet hat. Hopefully, I’ll get around to posting the pic for you soon.
Now that its over, I’m actually pretty pleased with it. Renee really likes it (or so she says) and I personally think it looks good. Mostly, I am glad it is over now since I wasn’t looking forward to this process and now that it is, it isn’t so bad. In fact, I think I will enjoy it for a few months.
Not much else happened the last few days which is why I didn’t get around to posting anything. The quick recap is that both Renee and I were sick for a bit and still getting over a cold. Our Thanksgiving was pretty quiet since weren’t feeling great so we ended up just having a small family day with the girls and Boston Market for dinner. As an upside, it took about 2 minutes to clean up since we just threw away all the dishes from Boston Market afterward.
The rest of the weekend went by quickly just getting a little shopping in and mostly trying to recover from being sick. Our house just seems to pass it around between the 4 of us. Fortunately, I am about over my cold and it wasn’t a big deal. Hopefully, we’ll all be healthy again soon.
My next round of chemo is on Wednesday this week. I am going to give blood tomorrow and then meet with the Doctor before chemo. Generally, I’m feeling pretty normal right now which is good. Only 6 more chemo sessions to go! Whoohooo!
November 26, 2009
Happy Thanksgiving!
I hope everybody has a great Turkey Day! See you at Best Buy at 4 am tomorrow (yeah right!)
November 24, 2009
“Why don’t you go blog?”
That’s what Renee just said to me: “Why don’t you go blog?” So, here I am….blogging. Ahhhh…what fun!
Today was interesting because Renee and I met up with an “Oncology Nutritionist” at Central DuPage Hospital. I found it to be extremely informative and I definitely am glad I went. Really it was more of a confirmation on many things that I have known or suspected vs. new information, but definitely a good thing.
One of the most interesting tidbits we learned is that studies have shown people going through chemo who take a significant amount of additional vitamins may actually have a worse prognosis. Its okay to take supplements up to the 100% RDA, but some of those one-a-days and other supplements may have too much of a good thing which apparently is bad for chemo patients. Her recommendation is that for the most part you don’t need supplements unless you aren’t eating well (which chemo patients often have trouble with). If that is the case, just buy multi-vitamins that don’t have excessive amounts above the RDA and beware of taking specific vitamins (ie Vitamin C or E) in excess quantities.
Coldwater fish is a big plus so that you can get both your omega3 fats and vitamin D. Specifically: Salmon, Mackeral, Tuna, and Herring. Walnuts and almonds also are a good source of omega 3.
She did give me the green light to have lox, although just like my doctor’s office, she thought its better to have it in smaller quantities and when my white blood cell counts are up.
Yogurt (with live active cultures) is good as is flax seed and shiitake mushrooms. (these are just a few random notes I jotted down).
All in all, the main lesson we learned is that there really isn’t a specific cancer diet that has been shown to improve your outcome during treatment. The key is to eat healthy for your lifespan and when you don’t have cancer focus on healthy foods that have cancer fighting ingredients such as anti-oxidants. During treatment, the only thing she has seen that showed evidence of really helping is to keep your vitamin D levels up which is a major problem for most Chicagoans since we don’t get enough in this area. The main source of vitamin D is from the sun. Dairy and fish are other sources, but its hard to get enough. She suggested I have my blood tested for Vitamin D levels and potentially take a supplement since a higher D level has been linked with a better prognosis.
She did suggest limiting red meat but even that was more of a healthy long-term lifestyle then a concern during chemo. The other thing she mentioned was to limit salt-cured, smoked (boo!) and pickled foods such as ham, bacon, and lunch meat. Apparently there is a link to those and cancer as well.
We spent over an hour with her and it was very informative. One area we covered was sugar substitutes which have had a lot of controversy, but according to Cheryl there has not been any link shown between sugar substitutes and cancer either. She said that aspartame had ten years of testing before it was on the market and has been around so long and still no evidence showing that it causes cancer.
I think, as usual, there will never be a way to say 100% what is good and bad, and the key is just to try to do the best you can. So, I am going to continue to try to eat healthy but still allow myself to indulge occasionally.
Fortunately, I haven’t had any problems with my appetite so far. I have had some changes in taste where I don’t want to eat certain foods (particularly healthy foods), and I really am craving “comfort food” (ie greasy hamburgers, gyros, etc). According to her that is just fine. The key as I stated above is to do my best and don’t go overboard on the junk.
November 23, 2009
Blogin’ on a Monday
Hi everybody. Sorry its been a few days since my last update. Overall the weekend went pretty well, but I was out of it for a little while there and just not up to the task of blogging. I’m back now and feeling better.
Saturday morning I was feeling pretty well, and Grandpa Jerry, Dmitriy and I went to the Living Well Cancer Center for the men’s breakfast and to hear from Dr. Small (Radiation Doctor from Northwestern). It was good to get out and also good to hear the doctor’s perspective on Radiation. He took questions and I asked him about how one should make the decision on whether to have Radiation or not. Of course, I didn’t get a definitive answer, but I did like listening to him and its made me think that it may be worth visiting him downtown to discuss the topic further.
I was still feeling okay until after lunch when I finally hit a wall and took a long nap. The rest of the weekend was pretty foggy and slow, but all in all, I don’t think it was any worse than the first round. I definitely am happy to say that I haven’t felt very nauseated and this time I took my anti-nausea meds a little sooner which I think was helpful. Unfortunately, Sunday night, Ella decided she didn’t feel like sleeping much through the night and neither Renee nor I got much sleep. So, today, Monday, was a bit of a drag, but I’m not sure if that is from the chemo or lack of sleep last night.
I think I am about out of the woods for this round and am looking forward to the next week or so of feeling better. 25% done….only 6 more treatments to go. Whooohooo!
In other extremely good news, I am happy to report that Renee’s biopsy came back benign. So we are relieved to know that there is nothing to worry about with her and can put that all behind us. She had the biopsy on Friday and other than being a bit out of it from the anesthesia wasn’t much worse for the wear. We got the results this afternoon and were grateful to hear the good news.
Thanks to Christina again for the wonderful dinner tonight. Loved it! Thanks also to my folks who were here on Thursday and Renee’s folks who stayed the rest of the weekend to take care of us. We’re pretty blessed with such wonderful parents! (And I’m not just saying that ’cause my Dad bought me a snowblower!)
PS – Jerry – the shower repair didn’t work right…Darn! The door doesn’t close….We’ll have to try again.
November 20, 2009
Friday
So far so good today. I went to sleep around 6ish last night and pretty much stayed in bed until 7 or so this morning. I got up in time to say goodbye to Renee who was off (with Grandma Carol) to her biopsy. She is back home now and resting up (still coming off of the drugs they put her to sleep with). The procedure went pretty well in general and we should hear the results hopefully on Monday.
I am feeling pretty well. My stomach is a bit sore and as the day is wearing on I am getting more and more tired. Probably about time to take a nap myself. All in all, I’m glad to report that I this definitely could be worse. We’ll see what the next few days bring, but I am optimistic that it won’t be too bad.
November 19, 2009
Joe Chemo
I don’t know why, but I thought this was sort of funny (and a bit sad too).
The further adventures of Chemo Boy
Round 2 is over! Just like last time it was pretty quick and painless. The only part that hurt at all was when they numb my port. It stings a bit for about 5 minutes, and then its over. After that, I can’t even tell that they are putting anything into my system.
It took less than two hours today. They started with a blood draw and checked my white blood cells and a few other things. My WBC count was pretty good (according to them) and seemed to be pleased with that. They gave me some anti-nausea meds which included benadryl. By the end of the session, I was starting to get pretty tired which is probably due to the benadryl (chemo fatigue comes later). Last time they gave me a steroid and I’m guessing that staved off the fatigue longer than normal.
Immediately afterward Renee and I went to meet her anesthesiologist for her biopsy tomorrow. Fortunately that didn’t take too long and then we went home. I went straight to bed and although I haven’t napped yet, I am getting pretty sleepy. Wake me when its all over will ya!
Today I learned that my White blood cell count will be lowest about 7 to 10 days after the chemo. I would’ve thought it earlier than that, but I guess that’s how it works. Dmitriy told me that too and I guess it just takes a while for the chemo to kill them off. So in about a week I need to be even more careful and stay away from sick people and anything that can get me sick.
I asked them if I could eat Lox because I’ve been craving a good lox and bagel. They didn’t know but after a quick web search it seems that its okay, but as usual there is nothing definitive to make me comfortable. The nurse thought it would be fine but to be safe, don’t eat it when your WBCs are low.
I am meeting with a nutritionist next week and will run the question by her as well. Since lox is smoked I would think that means it is cooked, but who really knows? Anybody have any ideas?
So, now I’m 25% done with the treatments. Although this round really isn’t over, at least I’m moving forward. Only 6 to go! Whoooohoooo!
November 18, 2009
Chemo Eve
Tomorrow is chemo round 2. Yippee! Oh wait, I mean “Oh crap, not again!” Well, to be honest, I haven’t focused much on it and although I’m not looking forward to it, I guess it could be worse.
Renee is having her biopsy on Friday so unfortunately, I won’t be able to be there with her since I’ll probably be in the midst of dealing with the side effects. Fortunately, my folks and her folks are pitching in over the next few days (thanks immensely!)
Tonight was interesting because I went to a little political meeting in my neighborhood. It turns out the person across the street from me is running for Congress and is competing in the primary in February. He sent out a flier advertising a meeting in our neighborhood clubhouse and I thought it would be interesting to go. Now, I’m not much into politics, but the last few years I’ve paid a lot of attention and I guess maybe I’m starting to get more interested. So, I figured why not. It was something to get me out and away from sitting around thinking about tomorrow.
The event started at 7 and I was the first one there. So, it was just Jim Purcell (the candidate), his campaign manager, and another woman in the neighborhood who was helping with the set up of the room. I enjoyed talking with him for about 30 minutes or so. Not to my surprise, he also had already been contacted by my friend and old neighbor Andy who has been pretty involved in the political scene lately.
I’m not sure if I will vote for him or not, but the thought of having a congressman live across the street from me is pretty appealing. If I don’t like the way he votes, I can always toilet paper his house. Anyway, I enjoyed the evening and afterwards went to the coffee shop and read the paper which is always relaxing to me. In fact, if I could do that every day, I’d be pretty happy.
Time for bed. I’ll let everybody know how round 2 goes tomorrow. Sleep well.
November 17, 2009
Oberweis
Tonight I took the girls to Oberweis for ice cream. Good stuff maynerd! I used to have “Daddy Dinner” night on Wednesday where we’d go out to dinner, just the three of us, and then to ice cream. Tonight, thanks to Renee’s friend Jami (thanks Jami!), we had dinner brought to us at home so I took the girls for just ice cream. They were pretty happy nonetheless.
I was reading through the chemo book that Dmitriy gave me on Sunday and one thing that I thought was interesting was the definition of chemotherapy. “Chemotherapy is the use of drugs in the treatment of cancer”. It seems sort of obvious, but I had always thought chemo was the actual drugs they used, but it really is just referring to the actual treatment. Considering that I’ve learned about all sorts of different chemo drugs that makes sense, but I guess it was a little different then I had thought. The different anti-cancer drugs attack different types of cells in different stages of growth and sometimes using multiple drugs (combination chemotherapy) can increase the number of cells killed.
My treatment is common for Hodgkins and is a combination chemotherapy called ABVD which stands for:
- Adriamycin
- Bleomycin
- Viznblastine
- Dacarbazine
Here’s a little info on the common side-effects of these drugs as well:
- Adriamycin can cause many side effects, including nausea, alopecia (hair loss), and neutropenia (depletion of white blood cells). It can also cause heart problems, such as arrhythmias, in some patients.
- Bleomycin can cause a fever, rash, alopecia, and Raynaud’s phenomenon (a discoloration of the fingers and/or toes). However, the most serious side effect is the occurrence of pulmonary fibrosis, which impairs the lungs.
- Vinblastine can cause neutropenia, ulcers, blisters, and nausea.
- Dacarbazine causes severe nausea in some patients, as well as neutropenia, headaches, fatigue, and diarrhea.
So far the only noticeable side effects have been fatigue, a little queasiness, and constipation. Hopefully that’s the worst of it, but I guess that remains to be seen.
November 16, 2009
Round 2 coming soon
Its Monday night and all is quiet in the house. Renee’s on the treadmill and the kids are sleeping. Good time for a little blogging.
Things have been going well the last few days and I have to admit that I’ve been having trouble coming up with anything to write about. I guess that’s a good thing and I should be thankful. Its been easy to write since so much was going on, but now that its calm I seem to have run out of things to say (yes, some of you are probably okay with me shutting up once in a while…but hey, this is my blog damnit!)
Yesterday, I finally met, in person, Dmitriy, who has Hodgkins Stage 4b. We’ve spoken a few times on the phone, but he came by to drop off some cookies (Thanks Nicole!) and a binder about chemotherapy that he received from Central DuPage hospital. He has been working with doctors over there and also went to U of Chicago on Friday for another opinion. There is still some debate about his best course of treatment which should probably be resolved today or tomorrow. After that he will begin chemo sometime this week as well.
A few things I’ve learned from Dmitriy: 1) He spoke with an “Oncology Nutrition Specialist”. I have the woman’s number and plan to set up time with her as well. It sounds like he learned a lot and was somewhat surprised by a few things she said. Specifically: No green tea, no vitamins, and no antioxidants during treatment. That sounds crazy but as I have now learned, its hard to know what advice to trust. My oncologist told me to take a multi-vitamin and most people think that sounds right. I am interested in trying to understand better why she thinks that you shouldn’t.
My father had forwarded me an email that was supposedly research from John Hopkins. Renee found out that it actually is a hoax email. It had some great information (seemingly), but as it turns out it is bad advice. Again, how do you know what to believe?
2) This one I really like. His doctor told him not to take cancer too lightly. With people saying things like “Nobody dies from Hodgkins” and so many good survival stories, I have already fallen into the trap of thinking that this is not really that big of a deal. His doctor’s advice was that there are still people who do die from even Hodgkins and if you want to ensure you’re not one of them, then take good care of yourself and be extra cautious throughout the treatment. Don’t let up for a minute because the risk is to great. That’s pretty good advice in my mind. That’s another reason to look closely at point #1 and really do your research to be sure you have the best information possible.
3) We also talked about the different opinions on Radiation. The university hospitals seem to be more anti-radiation. My doc out here and the radiation doc (no big surprise here) both think that it is the right way to go. So, how does one decide who to listen to in this case? The NW doc told me she would evaluate my progress around month 3 and if she thinks I am a candidate for no radiation (but extra chemo) then should would let me know. There’s a radiation doc from NW coming to the Living Well Cancer Center near my house on Saturday morning for a cancer survivor breakfast. I am hoping to go if I feel well enough so that I can hear what he has to say. The more info the better!
So, those are a few nuggets of wisdom I picked up this weekend. I also learned, once again, that my fantasy football team is even worse than the Bears this season. Sheesh, can’t a guy catch a break?
Round 2 of chemo is coming up on Thursday. I am not looking forward to it, but I’m definitely not as anxious as I was 2 weeks ago. I hope it isn’t any worse, but either way I’ll have one more treatment under my belt and only 6 (hopefully) to go.
Peace
November 14, 2009
Busy day today
I must be feeling better because I accomplished a ton today: Went to AT&T to get the modem fixed (new powersupply), went to the Library with Ella, went to Target, cleaned the hot tub, raked leaves and did yardwork, vacuumed Renee’s minivan, took Ella for a bike ride to the park and back, removed the screens and installed the storm doors, cleaned our bathroom, made dinner w/Renee (salmon stuffed with lobster/spinach – Renee bought it at Fresh Market), did the dishes, emptied the dishwasher, went to Jewel and bought lawn bags and softener salt, put Ella to bed and finished off the day with a final posting to my blog (you’re reading it now!)
There still is a ton to do around the house, but both Renee and I were quite productive today and we’re feeling pretty pleased about that. Booya!
Internet Down
The power supply on our DSL router died yesterday and I finally got it back up and running today (after a visit to AT&T). Hence no post yesterday after work.
I’m pretty much feeling 100% today and enjoying the warm weather after running a few errands with Ella. I am starting to feel a bit of dread coming on because I know that next week is round 2 and I am not looking forward to it. At least this time I have a better idea of what’s in store, but it still doesn’t make me any less anxious about it. That along with Renee’s upcoming doctor appointment and biopsy, it should be another crazy week.
November 12, 2009
Thursday Night Football
I’m watching the Bears Thursday night game and relaxing on the couch. I love Thursday Night Football almost as much as Sunday Football. Then there’s Monday Night football, and of course, Saturday playoff games. Its just a shame that the Bears are playing pretty lousy tonight as usual. (Lance – I hope you are enjoying being at the game..I’m jealous)
I want to send a special thank you to Renee’s girlfriends who have been so generous and thoughtful by bringing us dinner the last few nights. Specifically – Tobey, Christina, and Betsy! Thanks a million. We have thoroughly enjoyed the meals and it has been extremely helpful to not have to worry about dinner (and lunch the next day!).
Not much new to update regarding Renee. We will be meeting a doctor next week who will handle the biopsy, so we probably won’t learn anything new before then. However, to add to the misery, Ella, who’s had a cough for a while now, was diagnosed with “walking pneumonia”. Thankfully, she generally feels fine, just has a cough. She is now on an antibiotic and inhaler for a week or so. The good news is that the rest of us have all gotten over the same cough a week or so ago, and it doesn’t look like I have to worry about it (what with a compromised immune system and all). I’m feeling just fine.
Renee and I decided to talk with Ella (our nearly 4 year old) and let her know that Daddy is sick. Obviously, we didn’t go into much detail and I’m not sure how much she understood, but it was good to talk to her about it considering she may be sensing something is going on. When I was putting her to bed, I asked her if she would like it if I cut off all my hair. She thought I was kidding and laughed and said I would look silly. I said that Ellie’s Dad (Ellie is Ella’s friend who lives in the house behind us and her father Todd is bald (by the way – Todd…thanks for mowing our lawn a few weeks ago, and Greg …you too!)…also by the way, Todd’s wife, Shannon, a good friend of Renee’s, has a thing for bald guys, so I will probably need to keep the blinds closed.)…okay back to the story….so I told Ella that Ellie’s Dad has no hair. Should I cut all mine off too? She thought that was a good idea.
With that long-winded explanation, I’m thinking that I should make a production of cutting off my hair in the next week or so and that way Ella and Molly will be able to watch and not be scared or surprised later. I am even thinking maybe I could have a “chrome dome” bash to “let my hair down”. What do you think? Any good suggestions on how to make it happen? I may even post the video for you all to see.
November 11, 2009
Pile it on
As if we don’t have enough stress in our life already…..
Last Friday Renee had her first mammogram. This was just to set a baseline, but as luck would have it, they noticed some abnormalities. She had a follow-up today and there is some microcalcification which, although most likely benign, could potentially be malignant. So, she needs to have a biopsy done to make sure everything is okay. The doctor sounded pretty certain that this would be benign but he wants to be sure. Add that to our list of things to worry about. As I’ve said before….”UGH!”
Not much other news today. I’m generally feeling okay and everything is good so far.
November 10, 2009
Hat Poll Closed
This poll is now closed. Click below to see the results.
Slow day in the blogosphere
Not much that is newsworthy today. It is lunchtime and I have a few minutes to spare so I thought I would get in a quick post. I’m definitely feeling pretty normal today so life is good. Assuming nothing changes, that gives me over a week of feeling normal until my next treatment. I am going to try to enjoy it while I can.
As you may have noticed, I changed the overall look of the site. What do you think? There are a ton of different templates to try, so I may switch it around a bit just for fun. Gotta do something to entertain the masses right?
November 9, 2009
Back at work
I’m back at work today and feeling okay. I’d say I started the day about 90% normal and am definitely feeling a bit tired near the end of the day (it is now 4:00). Thankfully, other than my stomach and the fatigue, I am doing pretty well in my mind. I think I’m about out of the woods for round 1 of the treatment. Only 7 more to go! I have a bad feeling that each successive round is going to be a little bit worse, but I also, hopefully, will be able to prepare for it all better.
I didn’t realize what this would be like until I was in the midst of it this weekend. Obviously, I’d heard stories about how chemo effects you, but I guess it didn’t really sink in until I was fully immersed. Now, I understand what really makes this whole process awful: It’s the fact that every 2 weeks I have to essentially go from feeling generally fine, to watching a slow drip poison my system and then waiting for the side effects to take place. It’s bizarre because its not the cancer that makes me feel awful, its the chemo.
I guess I should be thankful that in my case not only do I generally feel fine, but I also have an extremely positive prognosis for coming through this cancer-free. I can’t imagine how someone could go through this without knowing that they will ever feel okay again let alone will they survive. The only thing I can think of is: UGH!
They say that if you are going to get cancer, then Hodgkins is the way to go. So, I guess as much as its hard to be thankful, I am very glad that I got what I got. It could be a lot worse right?
November 8, 2009
Sunday update
I’m starting to feel human again today, although it took some effort. I slept a lot again and have been bumming around watching the Bears game (speaking of bums). I definitely am feeling better so I went with Renee and the girls for a ride in the car. That didn’t exactly help, but it was manageable. I’m hoping tomorrow I’ll be close to normal. My plan is to go to work and fight my way through it. Hopefully I’ll be successful.
November 7, 2009
Day Two
Today started out okay. I actually felt pretty good and got up with the girls this morning. I was pretty groggy, but generally felt okay. By noon, however, I was pretty exhausted and took a 4 hour nap. Unfortunately, I felt even worse after that. Grandma Carol and Grandpa Jerry arrived while I was sleeping and after a quick shower we all went to get Molly a haircut. But alas, the place was closed by the time we got there and so we all grabbed a quick dinner at BW3. Probably not the best choice for me, but it was okay. I still felt pretty lousy and so Jerry just dropped me off at home where I am now back in bed writing this on my laptop.
Not a very exciting post, but I wanted to get something down today. Hopefully I’ll feel better tomorrow.
November 6, 2009
Next Morning
Well, all things considered, I am feeling pretty good. About 8:00 last night I started hitting a wall and felt pretty tired and a bit nauseated. Thankfully the nausea passed and although I had trouble sleeping, I feel okay this morning. Sort of like a mild hangover and a slightly queasy stomach.
I’ve got 3 different anti-nausea drugs that they’ve prescribed. The first, Kytril, I’m supposed to take every morning for the next 3. The other two, Compazine and Atvian, I am supposed to take as needed throughout the day. Supposedly this will keep me feeling okay (at least my stomach). Let’s hope they work well.
My next treatment will be on 11/19 which will complete cycle 1 of 4 (chemo is given in cycles – 2 treatments per cycle). The only other thing this month is to have my blood tested. Other than that, assuming I am feeling okay, I won’t need to see any doctors….whooohooo!
November 5, 2009
Chemo Sabe
Well, Chemotherapy has begun. All the hype, all the anxiety, all the worry, and I can officially say…..”meh”! No big deal. So far at least. Plus it only took about 2 hours. I was expecting closer to 4.
It’s strange because I felt fine before and still feel fine, yet here I am getting chemo. Crazy. I realize, of course, that it probably won’t be a walk in the park for very long, but so far so good.
The irony of it all is that Renee had a harder time then me today. When the nurse numbed my port, it hurt a bit since it is still tender and she also had to give me a shot in the arm with a test dose of one of the drugs which also hurt, that’s about it. The rest of the process was painless. Renee, on the other hand, felt worse probably then me. Oh well.
I sat there while getting my dosage and played on my computer pretty much the whole time while Renee read a few magazines. The time passed quickly and when I was done I was shocked….I said to the nurse, “but I’m still in the middle of this game I’m playing…I’m not ready to go yet.” Here I was thinking a 4 hour break to do nothing was a good thing and then it gets cut short to only 2 hours. Sheesh.
As you can tell, I’m in good spirits right now. My expectation is that it won’t always be that easy, but I am pleased how smooth that was. The nurse gave me a schedule for the next few months of when to take different drugs, when to come in for chemo, when to give blood etc. Hopefully everything will follow the schedule and the next 4 months will fly by.
Thank you to all the well wishers. I received a bunch of emails and text messages and they all were very much appreciated. Please cross your fingers that everything continues to go as smoothly as they did today.
-Joe
November 4, 2009
Twas the night before chemo….
…and not a creature was fretting….okay, except maybe me…and probably Renee. Actually, today was a pretty busy day and it went by quickly which is good because I didn’t have much time to think about tomorrow and my first chemo treatment.
I’m not feeling to anxious right now, but I have a feeling that I won’t sleep too well tonight. I suppose that is to be expected. I’m trying to look at the positive which is the sooner I get started, the sooner I’ll be done. I have 4 cycles of chemo (2 treatments per cycle) so a total of only 8 (hopefully!) After tomorrow I’ll already be 12.5% done. Whoohooo!
I still have to admit that this doesn’t seem real to me. It’s hard to believe that anything is wrong since I feel fine. The port in my chest is the only reminder that something strange is going on and I’m even getting used to that already.
Well..that’s all for tonight. Here’s a little cancer joke for your entertainment:
A man isn’t feeling well, so he goes to see his doctor. The doctor examines him, and then asks to speak with his wife. The doctor tells his wife that her husband has cancer. The wife asks “can he be cured?”. The doctor replies “there’s a chance we can cure him with chemotherapy, but you will need to take care of him every day for the next year — cooking all the meals, cleaning up the vomit, changing the bed pan, driving him to the hospital for daily treatments, and so on”. When the wife comes out to the waiting room, the husband asks her what the doctor said. The wife answers “he said that you’re going to die”.
November 3, 2009
Official News: I am Stage 2a
Today was my final appointment before chemo begins. It turns out that I didn’t even need to meet with the doc, since the only thing left to tell me was that my bone marrow biopsy was clean. So, that means I am officially a Stage 2a which is good news. I will start my chemo regiment on Thursday and continue on average every 2 weeks for 4 months.
I also went to the dentist this morning to get a cleaning while I still can. I brought Molly (our 2 year old for those of you who don’t know) and she was unbelievably good (and cute). She kept saying “open daddy” whenever I shut my mouth. When I was done she even got in the chair and let the dentist polish her teeth. Such a good girl. Here’s a picture I took with my phone:
November 2, 2009
Monday Monday
Well another quiet day is a good day right? At least for a Monday. Tomorrow is the big day where I get the final staging diagnosis (and go to the dentist). Fortunately, it doesn’t involve any poking or prodding.
I was at work today. I only missed a few days last week, but it sure felt like it had been a long time. Fortunately, it looks like I’ll have plenty to do to keep me busy there.
I exchanged emails with a co-worker (Teresa) whom I had not met before. Turns out that she has non-hodgkins lymphoma and is going through Chemo right now. It definitely helps to connect with others who are going through what I am about to. I also have been talking with somebody (Dmitriy) who was just diagnosed with Hodgkins a week or so after me. I have a feeling that we’ll be helping each other out throughout this process.
Teresa sent me the following link which is about a woman who was an avid runner and went through 8 months of chemo. It is pretty good (and short) so you may all find it worth a read. I really liked it:
November 1, 2009
Bears Win!
Finally! So they were only playing the lowly Browns, I’m still pleased. Maybe we still have a shot at the playoffs.
No new updates today. Just a quiet day with Gma Carol, Gpa Jerry, Uncle Eric, and Aunt Vanessa around the house. Football and Chili. It’s a good day.
Email Subscription
It has come to my attention that those of you who receive the daily email updates are receiving the email from my google account “jmbley@gmail.com”. I don’t regularly check this account so please do not respond to that email. The better way to reach me is via jmbley@yahoo.com.
Thanks.
October 31, 2009
John Hancock
Oh yeah, one more thing. I would love it if you would all “sign in” to let me know you’ve visited the site. I haven’t figured out a way to set up a guest book, so please just post a comment with your name so that I know you’ve been here. As our mothers have all taught us….”if you don’t have anything nice to say, don’t say anything at all”…..well just at least type your name and say the following (based on your gender):
Women -> “Bald guys are sexy”
Men -> “Joe is one tough guy…I bet he could kick my a#$ even with cancer”
Anything I can do to help?
I’ve gotten a huge outpouring of support and offers to help from people. I want to be sure to thank you all so much because it is truly appreciated.
I was conferring with Renee and since so many people have asked if there is anything they can do, we came up with the following list of things we need. Feel free to chip in:
- New leather sectional
- Landscaping
- New computer
- Finishing the basement
- Snowblower
- Playset for the kids
- Room built over our family room
- Fence in the backyard
- Porsche
- 15 dozen nestle tollhouse chocolate chip cookies
- Partridge in a pear tree
Hahaha. I hope you all realize that I’m kidding (mostly) of course.
Seriously, though, I do appreciate everybody’s support. The only thing I need right now is for you to continue that. Thanks everybody!
Happy Halloween!
Nothing for me to do today other than recuperate and take the girls trick or treating. Whoohooo! Thank goodness, no poking or prodding. Its been a heck of a week and I for one am glad its over.
I’m a bit sore today from the biopsy yesterday and the port is still pretty sore, but both are manageable. I’ll get the results back on Tuesday and until then I can avoid doctors and hospitals (yippee!)
I forgot to mention that Renee and I visited “Living Well” which is a free cancer resource center in our area that offers information, support, and other programs for people like me. They have a library of books and magazines and offer various support groups throughout the week. Plus they have all sorts of activities like cooking, yoga, meditation, and even massage. Everything is donated by people/businesses in the area including the starbucks coffee. Its a very nice place. They have a men’s breakfast once a month that I may try to attend and even a Lymphoma support group. I definitely will try out the massage ASAP!
I don’t have much more to report today, so here’s a little joke to entertain you:
A patient visited his urologist for testicular cancer and expressed concern about being able to perform after the operation. The patient was also worried about the chemotherapy. The doctor said “I too had testicular cancer a few years ago. Ten days after the operation I made passionate love with my wife, and forgot all my worries. Try it and see for yourself.” Three weeks later the patient returns, and thanks the doctor effusively. The doctor says “I’m glad my advice helped.” The patient thanks him again, and as he’s leaving says “By the way Doctor, you have a really beautiful house.”
October 30, 2009
“Bone” Appetit
First thing that comes to mind: Ouch! Second things: Seriously Ouch!
Okay, so I had my bone marrow biopsy today, but before I get into that I also had my PFT (pulmonary function test) which consisted of breathing and blowing into a tube for about an hour. It was no big deal, but still not terribly fun. Considering I just ran a marathon, I wasn’t terribly concerned about my breathing ability, however, I think part of that is to get a baseline and see if the chemo has any impact on my lungs.
Then came the real fun. Renee and I went to see Dr. Bayer for my bone marrow biopsy. Most of what I knew about the procedure came from watching Kitty on Brothers & Sisters (Sunday night tv for those of you who don’t watch the show). I have to say that my experience was pretty much what it looked like she went through.
Renee wasn’t allowed to stay in the room since she is a bit sick still and they don’t want the site to get infected. Then the doctor told me to roll my pants down so half of my bottom was showing. I told him that Renee had said the same thing to me the other day (haha).
He pushed pretty hard on my pelvic bone (no jokes here…particularly you Steve!) and found where he wanted to insert the needle. Then he coated me with Betadine and said…”little bee sting”. That was the numbing agent which did feel like a little bee sting. He did that two more times before saying “Here we go”.
This was the moment where he jammed a bigger needle into me and started grinding it as hard as he could to get through the bone. The urge to scream like a 3 year old girl was strong, yet I managed to stifle it. Once he got through the bone I think (since I wasn’t watching) he sucked up some of my juicy bone marrow and a weird feeling flowed through my hip. Then he pulled the needle out. Unfortunately, he had to repeat the process one more time and the second time was a bit worse. Then, finally, it was over. The whole thing probably only took a few minutes, but it sure seemed longer than that.
Afterward, we made a nice bone marrow and noodle soup but that’s another story. Actually, after that Renee and I went and saw Shelley who works in the chemo room to go through the “chemo training”. Pretty much she talked about all of the things I will go through and what I need to do in case of a fever, or to keep hydrated, etc. There was a lot of information about constipation, diarrhea, eating, skin care, hair-loss, teeth/gums, etc. Fun for the whole family.
We also scheduled my first chemo treatment which will be next week Thursday (11/5) at 1:00 in the afternoon. Can’t wait! Ugh!
Then Renee and I took advantage of the fact that Gma Carol was watching the girls and we went to the store and picked up a few things that they recommended like lotion, immodium, prunes, special mouthwash and toothpaste, and a few other unpleasantries. Ah what fun.
My hip is pretty darn sore and I’ve been walking slowly. It is extremely uncomfortable to sit in one place for long, but it seems like it is subsiding a bit.
I forgot to mention that Dr. Bayer confirmed that as long as nothing shows up on the Bone Marrow, I will officially be a Stage IIa. That’s great to hear.
That’s all for now.
October 29, 2009
Portal to my soul
This morning, Renee, Grandma Carol, and myself had to get up early to go to get my port put in. Actually, Renee and I had to get up for that, Carol had to be ready for the girls to wake up (which they both did before we left anyway).
For those of you who don’t know what a port is (and I didn’t until recently), here is the description from wikipedia:
In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick”.
A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava). Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently.
Honestly, this was something I was really dreading because everything so far has just been testing. This is something that will stay with me throughout the entire treatment. In my mind it makes all of this a lot more real. At this moment, however, it doesn’t bother me (mentally that is) as much as I thought it would. I guess I have resigned myself to the fact that whatever I have to do I have to do.
We arrived at 7:45 and they set me up with my last IV (at least for the next 6+ months) and then the Doctor came and spoke to me. The plan was to put me in “twilight” so I will not be totally out but I won’t remember much if anything. At about 8:30 they wheeled me in to the OR, got me on the table and then gave me the drug. I don’t remember much after that and definitely didn’t feel any pain. I think I was done before 9:30 and felt pretty good. I probably left the hospital before 10. An hour or so later I was starting to feel a bit of pain and took a nap. Now I’m feeling a lot more pain, but its pretty manageable.
I was supposed to have a dentist appointment this afternoon to get my teeth cleaned before the chemo started (can’t have bleeding gums etc later). However, the doctor didn’t want me to do that since there is a minimal risk of infection to the incision site. So, I think Renee moved that to Monday.
I had asked them to install a bluetooth sensor in the port thinking maybe I could use it to stream iPod music or something. For some reason they didn’t seem to think that would work. Too bad, there’s gotta be some use for this thing other than just taking my blood and giving me drugs. Any thoughts? I should be able to at least change the channel on the TV without a remote control. Somebody needs to invent this stuff.
October 28, 2009
Radiation Doc
I met with the Radiation Oncolgoist this afternoon (Dr. Bendre). I really liked him. I didn’t really learn much new, but it was good to discuss the differences between chemo and radiation and his thoughts on my overall treatment plan. He is in agreement with Dr. Bayer that I should have some radiation treatment after the 4 months of Chemo. Assuming everything has improved from the chemo, the most likely treatment will be 2.5 weeks of radiation (5 times a week). That would begin about 3 weeks after I finish chemo.
When I spoke with the NW doc (Dr. Winter) she advised that I might be able to extend the chemo for 2 additional months (6 months total) and not have radiation at all. I discussed this with Dr. Bendre also to see his take on that. The “gold standard” is a combo of both, and the question really becomes which approach will 1) increase the likelihood of obliterating the cancer 2) decrease the likelihood of longer-term side-effects as well as the likelihood of a relapse.
Unfortunately, there is no definitive answer and so I’ll have to work with all the docs to make the best informed choice.
The thing that Dr. Bendre said which I liked the most was (and I quote) “Nobody dies from Hodgkins anymore”. That’s definitely re-assuring in my mind. He also gave me 3 pieces of advice which I think are pretty good:
1) Don’t let the cancer claim you
2) Take 10 minutes everyday to appreciate something in my life
3) When this is all over, be sure to help others in need
Please feel free to post your own nuggets of wisdom.
Dog Wednesday
Well, its Wednesday and Renee is sick as a dog. Not good. Molly is about over her sickness and both Ella and I have a cough. I called the Dr. to find out what he wants me to do but am waiting to hear back. Meanwhile I stayed home from work today (I was only going to work a half day anyway) but I need to help with the girls. Ugh.
October 27, 2009
Back at work
Well, I am back at the office today. All I had this morning was a quick trip to the ENT to look at how my biopsy wound is healing. Apparently, it is healing just fine. I have the rest of the day off with no needles, poking, or prodding.
I did, however, finally, talk with my boss at work and let her know what’s going on. I will be speaking with our HR department later today as well. I’m glad the cat is out of the bag now and will work with everybody to figure out how best to balance my workload with my upcoming treatments.
Bears Poll Closed
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October 26, 2009
Donation of another kind
Well, here’s a topic I wasn’t sure that I would be addressing on my blog, but after a few discussions with Renee and others I’ve decided if I’m going to spill my guts, I might as well talk about this too. Yes, I am talking about my trip this morning to the sperm bank.
Renee made me promise not to be crude since there are grandparents, pastors, and all sorts of other people with delicate sensibilities reading my blog. So I will try to keep the reading level to PG. It’s “hard” not to make jokes though.
Anyway, yes, I have been advised that it is a good idea to have my boys frozen because one unfortunate potential side-effect is infertility. The good news is that this is not highly likely, but it pays to be prepared just in case. So, today I made my first deposit and will make 2 more over the next week or so. Of all the things I’ve gone through over the last week, I can honestly say that was definitely the easiest. It was a bit awkward however, but it sure beats getting “pricked” by a needle if you know what I mean.
Part of the humor in this story is that Renee and I took the girls and met my parents in the parking lot of the sperm bank. We switched cars and they took the girls home while we stayed there. Have any of you ever met your parents at a sperm bank?
The place was fairly nondescript but it still felt incredibly awkward. I was pretty happy to make my donation and get out of there, however before I left, I asked the nurse why sperm donation is so expensive? She said: “Because it is hand made”…..sorry couldn’t resist.
Kudos
By the way, I want to post a separate huge thank you to my folks (aka Grandma Esther & Grandpa Chuck) for all the help they’ve given Renee and I today and last Friday. They’ve managed to watch the girls all day twice now and I don’t know how we would’ve done all this without them. Thank you thank you thank you!
Since I’m thanking people, I also want to thank Grandma Carol who is coming to visit on Wednesday and also going to be a huge help (and has been many many times before) with the girls as I finish up these last few appointments throughout the week. Thank you thank you thank you!
And for everybody else reading this blog, big thanks go out to all of you for the kind thoughts and words. I am amazed at all the support and encouragement I’ve received already. Please stick with me throughout this journey because I have a feeling I’ll need you even more soon, but know that you have already helped a lot.
Monday
Hi everybody. It’s been another long day, but generally a good one. The original plan was to go downtown to see the NW doc (Dr. Winter) and then out to Skokie for a flu shot. Well, when we got downtown, Renee was texting her friend Christina about the flu shot. Christina had gotten one at CVS and looked them up and found a CVS downtown that had the shot. She texted the address to Renee and I plugged it into the GPS. When the route was computed, the computer said turn right and you are at your destination. I looked out the window, and we were sitting in front of the CVS! Crazy. I walked in, was #2 on the list and got my flu shot within 10 minutes. That was fantastic because it saved us a lot of driving and as it turned out, we would’ve never made it to the appointment anyway. Huge thanks to Christina! She get’s the honorable mention of the day.
We had time to kill and met up with Josh (one of my longest and closest friends for those of you who don’t know) at Elephant and Castle right across the street from NW. Renee and I partook in a late morning beer (yes, it was noon somewhere) and had a good conversation with Josh. (Mostly about superheroes and video games, and a few snide comments about borrowing my Dad’s old toupee etc.) Then we went to see the Doc at 1:00.
It was a good meeting. Renee and I had brought my PET and CT scans on a CD so Dr. Winter reviewed those and although this is still not final, it is looking very likely that I am going to be considered Stage IIa. That’s good news because we were certain I was at least stage II and it appears that there is nothing showing up below my diaghram which would make me at stage III or IV. So, most likely that is going to be the case, but there is still the bone marrow test (ugh) and the final reports from the scans. This doctor was very nice and seemed to know her stuff well. She also knows Dr. Bayer who is the Geneva Oncologist I’m seeing and is open to working together with him.
The plan most likely will be that all my reports/tests/labs/etc will go to both doctors and they will confer to determine what makes the most sense. They both agree that assuming nothing new is determined from the tests that I will need to go on a 4 month regiment of Chemo and at the end of it potentially a dose of radiation. Dr. Winter thinks that there is a chance I might do well enough with the chemo to not need the radiation, however, the tradeoff is that I would probably have to have 2 extra months of chemo. I’m not sure which is worse, but it sounds like avoiding the radiation is the safer approach to avoid longer term problems.
I was very happy to see that they both pretty much agreed and my doctors will be able to work together. Northwestern definitely has a great practice and its nice to know that they will be watching all of my reports closely and advising my doctor in Geneva. They agreed that having the treatment near home would be fine since it is the same either way. I would prefer not to have to go downtown and back for each treatment so that is good news to me.
October 25, 2009
Peoria
Well, today is a nice quiet day at my in-laws in Peoria. No poking and prodding (other than by my kids) today. Nothing new to report. My only question is this: When they take blood or give you an IV why do they then have to put this tape over the bandage/gauze that pulls the hair off your arm and is sticky for days? Very annoying!
October 24, 2009
Scan This
I just finished my PET scan. It wasn’t bad, but you have to lie perfectly still for 20 minutes with your arms over your head. That’s the worst part because my arms were falling asleep.
Now I’m waiting for my CAT scans. They were able to fit me in today so I don’t have to come back on Wed. Yea! I also can use the same IV so that’s one less needle prod too. I’m sitting in a waiting room drinking some delicious (not) drink for an hour before they can do the scan. I also got my pneumonia shot this morning. Sounds like fun doesn’t it?
October 23, 2009
Whirlwind Day
Well, a lot has happened today. I had the appt. with Dr. Bayer in Geneva. I learned a ton and it kicked off a whirlwind of an afternoon. We spent a few hours in his office talking through all of my questions and essentially planning the next steps. Afterwards, I gave blood and then headed home for a few hours of work meetings. Meanwhile, Renee was busy making me appointments left and right. One of the to-do’s was to get the H1N1 shot which is incredibly scarce right now. Renee found a clinic in St. Charles that was giving the shots tonight and we rushed over there for a 3 hour wait to get the shot. We brought Ella too so that she and Renee could get the shots since half the battle will be to keep them from getting anything that I might catch.
We finally got home at about 9 and I just finished putting Ella to bed and now finally have time to start digesting everything. Here is a list of tests/procedures/appts I now have scheduled (thanks to Renee!)
10/24 – Pneumonia Shot, PET Scan
10/26 – Regular flu shot, Visit with NW Doc
10/27 – ENT Checkup for neck biopsy
10/28 – CAT Scan (Pelvis), CAT Scan (Ab), Lung Test (PFT), Radiation doctor consultation
10/29 – Port Placement
10/30 – Bone Marrow Biopsy, Chemo walkthru
11/3 – Follow up with Dr. Bayer again for results of all the tests to determine my staging. At this point, I will be ready to begin Chemotherapy which will most likely start at some point in the next few days.
We won’t know the treatment plan for sure until all of the test results come in, but most likely (according to Dr. Bayer) I will have 4 months of chemo (treatments every 2 weeks) and then radiation afterwards. The chemo will shrink all of the lymph nodes down and the radiation will be targeted to focus on any cancer that still remains. Hopefully, after all that, I’ll be cancer-free! Whoohoo! Cakewalk right?
Throughout the treatment, I’ll be getting regular (weekly?) tests to check my status and white blood cell count.
There’s a lot more, but that’s the jist of it for now. The next week is going to be pretty crazy trying to balance work and all of these tests and then it looks like November will be when the real fun begins. I’m estimating complete baldness by 11/16. Anybody wanna take a guess? Hmmm…maybe that should be my next poll.
First Appointment
Well, today is a big day. My first Oncologist appointment. Not exactly the kind of thing that you celebrate, but I am looking forward to learning about how things work. I’m quite anxious to get the testing going so I can find out what stage I am in. Here’s some info on staging for those of you wondering:
There are four stages which depend on how far the cancer has spread through the body:
- Stage I
- involves one lymph node region
- Stage II
- involves two or more lymph node regions on the same side of the diaphragm
- Stage III
- involves lymph nodes on both sides of the diaphragm
- Stage IV
- involves other organs besides the lymph system
The letter “E” is used after the stage to designate disease disease spread to other areas (bone marrow, lung, etc.)
Two other terms are used in staging:
- Progressive
- The disease progresses (grows) while the patient is in treatment (usually treatment reduces tumors).
- Recurrent
- Recurrent disease means that the cancer has come back after it has been treated. It may come back in the area where it first started or in another part of the body.
Staging is also dependent on whether the patient has had a group of symptoms including night sweats, fever, or weight loss. Patients who have had one or more of these are grade “B” while patients who have none grade “A”. Itching and back pain are not symptoms which rate the “B” designation but can be common in many cases where “B” symptoms are evident.
October 22, 2009
Story Time
I’ve already heard a ton of stories from people who have a friend or relative who have survived Hodgkins and are doing great today. Please feel free to post them in the comments section. The more the better since it is extremely encouraging to hear them. Also, any insight or ideas that anybody has are welcome too. I’m all ears/eyes right now and open to any ideas.
Quiet Day
Well tomorrow is my first Oncologist appointment. Today is relatively quiet since there isn’t too much more to do other than a few odds and ends such as getting my list of questions together for the doctor.
I have a feeling things are going to really move quickly after this. The next steps should be getting tested to determine exactly how wide spread this is and then determining the treatment plan. And away we go…..
So, I’ve already begun getting a ton of emails and well wishes from people. Thanks everybody for that. It is a wonderful feeling to have so many people rooting for me. I have a lot of good friends who I haven’t seen or talked to in a long time and its great to hear from you all. Of course, I would prefer if cancer wasn’t the catalyst, but that’s okay. Sometimes that’s what it takes to remind people of what’s important.
October 21, 2009
Email Subscribe
I’m not sure if the email subscribe function is working right. When you click on the link it takes you to another “feedburner” site. You need to subscribe there. You will then get an email (check your junk folder if necessary) with a link that you need to click on in order to be officially subscribed. Hopefully this works, but if not, I’ll post a new note.
Why Randomguyness?
It occurs to me that some of you may wonder why I chose the name for this blog. I figure I might as well address that question now. After Renee and I went to Hawaii this year I decided that in order to keep up with Internet trends, I should start trying out things such as blogging, Facebook, and Twitter. So, I signed up for all of them and chose this particular name for my blog because I envisioned talking about random guy-related things that occurred to me and might be humorous (particularly to other guys). Of course, with the best laid plans, I never actually got around to using the blog until now. I figured that since I already set it up, I might as well use it.
My goal is to still find some funny things to write about, but we’ll see how well my sense of humor keeps up with me throughout this process.
As guests to my blog, and as a way to cheer me up, please feel free to post jokes as appropriate. I’m sure I’ll enjoy reading them.
Cheers.
More Docs
Good news….Renee just got me an appointment with the Northwestern Lurie Cancer Center docs. So, I’ve got the first appointment in Geneva with a doctor who has gotten multiple recommendations on Friday and then the second opinion appointment on Monday. That should get things moving quickly. Of course, as much as I know we need to move quickly, that isn’t exactly the most exciting news to me. Oh well, I gotta do what I gotta do.
October 20, 2009
Quick History
So, here’s how things have transpired up to this point:
About 2 months ago I noticed a lump at the base of my neck. I talked to a doctor about it but he didn’t think it was anything to worry about. I then was talking to another doctor about my sleep problems and I asked him to check it out for a second opinion. He was a little more concerned and suggested I go see an ENT. I saw my ENT (same guy who fixed my deviated septum last year) and he was much more concerned. He told me to get a CAT scan of my neck and a chest x-ray. I scheduled those for Monday, 10/11…the day after I ran the Chicago marathon.
So I went in to get the scans done and after I finished I was going to another part of the hospital to have blood taken. The receptionist there got a call from the first department telling me to go back after I gave blood because they want to do additional tests. This, of course, was pretty alarming. They told me that they noticed a few other areas lower in my chest and they wanted to run another CAT scan on my chest.
At that point, I was pretty sure the news wasn’t good. I set up time with my ENT the next day and we went over the results. The prognosis was Lymphoma, but he wanted to biopsy the lump to be sure. We scheduled that surgery on Thursday, 10/15, and they sent the lump out to the lab immediately after. The results came back the next day and they confirmed that I do, in fact have Lymphoma. Specifically Hodgkins variety. Frickin’ yippee!
Well, here we are the following Tuesday and I’ve got a million things to think about. It’s bizarre because I feel perfectly healthy and am in generally a good mood. I have my first appointment with an oncologist on Friday (10/23) and am working on setting one with another doctor for a second opinion. My primary doctor is supposed to call today and give me some referrals.
Renee has talked to a lot of people and is working hard as my team captain. She’s been great and I know that I am going to rely on her more than I have ever relied on anyone before.
I’ve only told a small handful of people outside my immediate family. Its awfully awkward to talk about it to be honest. I really don’t want to, but the truth is that its not hard, I just don’t like it. I’m not really scared, but it sure doesn’t sound like fun. And every once in a while I think some bad thoughts which I just can’t even comprehend right now.
Did I mention that there is a ton to think about? Well, I’ll get to all that soon enough.
The journey begins
Well, last week I was diagnosed with Hodgkins Lymphoma. Not exactly something you want to hear. I signed up for this blog to start sharing my thoughts about all sorts of things, but I think now I’m going to use it as a way to communicate to my friends and family about what’s going on as I progress through the treatment of this disease.
I plan to also use this as a way to keep track of my appointments, doctors, etc. Mostly, however, I’m hoping it will just be an outlet for me to talk about what’s going on and how I’m feeling.
