Jonny May

I was doing some spring cleaning today in my basement and I decided to tackle “Jon’s corner”.  Jon’s corner is mostly empty now, but for a time it was stuffed full of all of the stuff we moved out of Jon’s apartment in Toledo from the summer when he was diagnosed and needed to move out.  He was in Minnesota for treatment and we loaded up his truck and my van and moved it all to my basement (with some help from mom’s family).  Over the last few years Jon’s spent time at my house and he has always had his little piece of home and he has taken most of his stuff with him.  I finally decided to tackle what was left to see if there is anything he might want/need and to work on the (much) larger goal of cleaning/reclaiming the basement (it’s not quite a hazmat facility).

The point of my story is what I found in Jon’s corner.  A small portion of what I found is clothes.  Clothes that Jon used to wear all of the time:  Notre Dame, FHSU, BGSU, & Ohio Medical college gear, the Cininati Reds uniform he wore for Halloween (he dressed as Chris Sabo), and small pile of socks.  Clothes that are now too big because he is almost half the weight he was when he wore them.  I found a World Series program and Jon’s baseball gloves and I remember how much he has always loved to watch and play baseball.  I found his nice pool cue.  I found some of the camo I gave him from the Air Force Academy that he used for hunting.  I found some fishing lures and fishing line.  I found his basketball shoes.  I found books and notes from Fort Hays and from Ohio Medical College.  These are all part of Jon’s life from 3 years ago, before cancer.

I also found packages of the bandages Jon needed after one of his surgeries.  I found some empty bottles of one of the many medications he has had to take.  I found the extra foam for the matrass he had down hear to ease some of the pain when he slept.  I found a few cards from family and friends wishing Jon well.   All reminders of the fight over the last 3 years.

I’ll be hoest with you, going through it all was not easy and I did cry.  I also felt anger that cancer has taken this from Jon.  I also felt a lot of anger that Jon has had to suffer through all of this, that more is not being done to find a cure: that more money is not going to research.  I also took some time to pray that Jon may be made well and that he can once again enjoy the things that I found down here.  Jon, don’t worry you corner may have moved, but it will still be down here when you are ready.

Hey, it’s Brandy here! Just wanted to give an update on Jon! After waking up to some serious pain and frequent urination overnight I called hospice and they decided we should bring a urine sample to the hospital in Beloit. Jon was in so much pain that we decided he should come with. He had taken some ibuprofen before we left, but by the time we got to Beloit his pain had returned. He decided to be admitted, which is hard for him because, as you know he really hates being at the hospital!

After getting some fluids started and some pain medications they took him down for a CT of the kidneys/bladder. In about 30 minutes we had results! He did have a kidney stone, but it had already passed into his bladder! So the worst is over!

Now, he will just finish this bag of IV fluids and he will be released. Hopefully he will pass that pesky stone tonight!

Thanks for all of your love, support and prayers! We love you all!

Brandy and Jon

Hello out there. I am sorry for not posting a quick update on my latest scans. Overall I feel good about them despite mixed results (at least in the lungs). My bone scan looked great, nothing new popped up or got worse. However, in my lungs there was some growth and yet some shrinking and even disappearing tumors in some areas. It was decided that I stay on Sutent for another cycle. So I won’t have much change in my treatment plan for at least another month to six weeks.

I am looking forward to the big day tomorrow and getting settled eventually in the Dallas/FW area. I am confident that Brandy will find a good job down there and we are really excited for the warmer weather. We are working hard on finding the best medical team possible for me on all fronts.

As for graduation, you can watch a live webcast of the commencement ceremony at http://video.utoledo.edu (it should start around 10 AM).

Thank you all for the kind words and prayers!

Greetings everyone. I hope you aren’t all too stuffed (or shopped out). I had a nice weekend and definitely ate my fill. Things are holding steady with me. Still having some issues with weight, but hopefully that’s turning around as my appetite is doing well. I just took my last dose for the current cycle of Sutent (my latest chemo). I’m now on a 2-week break and will have some very, very important scans next week to determine if I stay on the drug or not. I have 2 more days left of radiation on my skull. Another good sign is that I’m slowly cutting back on the pain-killers. From my standpoint, it seems that both therapies are going to work and hopefully I’ll get confirmation on that next week.

We are keeping busy by contemplating a move to warmer climate and by trying to squeeze in my graduation. I will walk on Dec. 20 here in Toledo and will receive my MPH degree (Master of Public Health)! Another major life-goal reached that I had my doubts on, but thanks to my supporters (YOU!) we found a way to get it done.

My schedule for today includes a home health nurse visit, hydrotherapy, and radiation at Flower Hospital this evening. I sure could use some prayers for favorable results next week. God Bless you all and thanks for your support and, as always, remember that there is plenty to be thankful for!

Hello everyone. The wedding (and birthday) were great, thank you all so much for gifts, cards, and even words of encouragement. It all helps a great deal. Brandy looked absolutely fantastic! She also wants to convey a deep and sincere thanks to those who helped her become a beautiful bride. We are enjoying the married life.

As for my health, not much has changed. I am still on Sutent and the doctor seems to think I am seeing benefits from it (although not for the bone problems). We won’t get official word until my next scan which should take place in a few weeks. I have started another round of radiation on the back of my head. These 2 spots are a bit more dense then the previous ones so they have to up the strength of radiation that I am receiving. The good thing is that it should not have any harsh side effects. However, I am expected to have hair-loss (which could be permanent) in that area. Looks like I may have to start thinking about Rogaine a few years earlier than expected…and my wardrobe of baseball caps.

Best regards and thoughtful prayers to our support team: family, friends, doctors, nurses, researchers, and other specialists who help with my overall well-being. God Bless!

Hi all, sorry but I’ve been very busy lately preparing for the wedding this weekend and taking care of myself. I started a new chemo treatment and just finished up with another round of radiation to my left shoulder and left leg. The chemo drug is called Sutent and apparently has shown results in some ASPS patients. Hopefully it will for me too. This time it’s an oral pill. It does come with some side-effects since my doctor has me on a rather large dose. I have had some bouts with vomiting and a poor appetite. I take the drug for 28 days then I get a much-needed 14 day break. I will have scans at the end of the second cycle to see if my situation has improved or not. I had a bone scan a little while ago and it confirmed the presence of bone tumors that we already knew about plus 1 or 2 other areas which thankfully aren’t as much of a concern at the moment. The bad thing is that these things are very painful so I’m on plenty of drugs (which I hate) to alleviate the pain.

Well, thank you all for the well-wishes for my wedding day. I have almost forgot completely about my birthday on Monday. We appreciate the prayers and cards too! God Bless

I thought I’d throw up a quick update before I head to South Bend for the game. It’s been quite a last 2 weeks for me. The actual surgery went well, however, my lungs had trouble “waking up” from the anesthesia. It put me in the surgical intensive care unit for 9 days. So you can imagine I was pretty frustrated and pretty scared. I really struggled with breathing at times and we really had to work to keep my O2 levels from getting to low. It took a long time to get over. I got home on Sunday and was starting to feel better when I developed some pretty serious pain in my left shoulder (there is a lesion in the bone). It was a very rough time as it was the most pain I’ve been in quite some time. We had to once again redo some pain meds and after a long couple of days, got it under control. The leg is actually coming along pretty well. I’m still a bit gimpy but it’s on the mend. My lungs are still recuperating. I am doing much better than I was though, hopefully I can get off of O2 24/7. Well, I’d write more but we’re on the go. I’ll post again soon.

Thank you so much for the prayers, cards, and well-wishes!!

Will it ever stop? I am scheduled for surgery on Friday which should not be easy or fun. Now we’ve discovered a rather problematic lesion in my left femur that will need stabilization so it won’t break. We were advised to get this done sooner rather than later. The actual procedure from the surgeon’s standpoint (same guy who did my shoulder) should be easier than the last one, however, it will be more painful for me. A rather large titanium rod will be placed in the bone. I’m not sure when I’ll be back on my feet yet. Hopefully we’ll know an estimate soon (it shouldn’t be too long).

Lately I just finished up another radiation block that included 3 places. One on the top of my head slightly to the left, another on my cheek bone, and on my operated-on shoulder. It was a little more involved than my last bit of radiation, but I got through it just fine.

We are desperately awaiting the moment I can return to receiving more systematic care. I need to get on another clinical trial ASAP. The way I see things now is kind of like putting out wildfires that keep popping up, but we can’t afford to do that for much longer. So until we finish all of the surgeries (still have another area of concern as my original tumor has returned in the soft tissue of my left leg) and radiations, we can’t move on with finding an appropriate trial. So we hope to have slow or no growth in other tumors while we get the immediate problem ones under control.

Thank you all for your continued support, you’ve all been so great to me and my family. Hopefully we can find a way to juggle all of these health issues and plan a wedding at the same time, it sure will be a challenge.

We’ve discovered 2 more tumors in my skull that will need to be treated. They also decided to radiate my arm to make sure they got everything. I have a preliminary appointment next Wednesday, then we’ll get started the following week. It sounds like I can have all 3 spots done at once so that will make things easier. Also on the horizon will be a bone scan to find out if there are other areas we need to treat. Metastasis to the bone is tricky business. It may be awhile (a month or so) before I can start another trial, which I really need. I am hanging in there although it gets a little harder each time. Thank you all for motivating me to fight. I will never stop.

I will take some time out this weekend for a little fun. We are heading to NYC to catch a Mets and Yankees game. This has been a dream of mine for some time, and it looks like I’ll be able to make it happen! It will be a tiring week, because as soon as I’m back from that, I’ll be leaving to head back to Tipton, KS (it will be a very quick trip) for the Church Picnic. Hopefully it all works out.

God Bless you all.

Recovery has been slow but sure. I can do a little more with my arm all the time. The pain has been, well, a pain. I can control it but other side effects come with it. It is difficult to manage all of the medications and their timing. The incision itself looks pretty good. I have 23 staples in my shoulder starting close to my armpit that goes vertical. Around the incision is not really that sore (it’s actually quite itchy at this point). It’s the part around the deltoid muscle that is sore to the touch. It all gets very stiff too, but if I do my exercises, it’s not too bad. The surgeon wanted me to ditch the sling so I don’t get stiff and try to re-establish a range of motion.

I am holding up alright, but I will need to get a full bone scan or bone density test soon. I am afraid there could be other areas we need to get treated right away. Other bad news is that I will not be able to continue the promising trial that I was on. However, from what I understand there are a couple more options that are drugs very similar to that one, just made by a different company. I will have to wait a few weeks as I heal from surgery to get started. I get my stitches out Monday. I am not sure of what my full capabilities will be once healed. Hopefully some bone grows around the cement-filled area for stability. At the very least I am eating better now.

Thank you all very much once again for supporting me and my family. Please keep it up. God Bless you all.