It took 29 years, but I finally was able to get out on the slopes again. I was on the Southfield High Ski Team, and even earned three varsity letters, but hadn’t been skiing since my last meet in high school. Before my diagnosis in 2015, I had scheduled family ski lessons through a program called Discover Michigan. I was unable to go because of my condition, but Lisa and the kids went and had a great time. Now that I’m healthy, I signed up again this year. We spent that day at Mt. Holly. It felt very comfortable and I had no problem getting around on skis. It was in the single-digits, but we dressed for the cold and it turned out to be a non-issue. Looking forward to going again.
Today is a very surreal day for me. One year ago, on December 16, 2015, at about this time of the day, I was heading to an appointment with an Oncologist at Henry Ford Hospital, where I would receive my cancer diagnosis. Less than 24 hours later I checked into Henry Ford Hospital for almost a month. I ended up spending much of January, February and March in the hospital. On March 15th, I had a stem cell transplant. I was told at the beginning that the recovery time is 10-12 months. It’s a year later and I wanted to provide an update.
I FEEL GREAT. My cancer is in remission. I am back to work full time (from home). I still have to lay low until I’m one-year post-transplant, which is why I’m working from home. You won’t see me out and about except for a few rare occasions. I feel like my old self again after all these months.
I just want to thank everyone who supported me and my family during this difficult and unexpected time. I’m looking forward to March when I can spread my wings again. 2016 has been a very strange year, so I just wanted to share some good news as we enter the Christmas season.
I also wanted to continue to advocate for stem cell/bone marrow donation. I wouldn’t be here today if a donor hadn’t been generous enough to provide a stem cell donation to me. Please consider becoming a donor, especially those of you who are 45 and under. It is a relatively painless process today (it’s a lot like a blood transfusion) without the need for surgery. Receiving the donation was literally a 10 minute process for me. Stem cell donation can help those with Leukemia, Sickle Cell Anemia and other blood disorders. You join the registry by getting a mouth swab, and for those under 45, joining is free. You are only contacted if you are a match for someone. Most people are not as lucky as I was to have found a donor so fast. Some people wait for months or years, and others never find a match. If you have any questions about the process let me know. Visit http://www.bethematch.org for more info, to make a donation, or to request a kit.
Yesterday was election day.
First day back to work. I spent a few hours in the office getting my laptop set up and gathering up papers and what-not I took my ID picture (aweful). I’m starting back working half days from home, then I’ll work full time from home until March/April, then back to the office.
July 4, 2016
I had some food success today. Lisa and the kids went to the Michigan RibFest in Pontiac. They brought back some rib tips and I was able to eat them! Still no luck with beef or chicken.
More food success. Ate most of a Pizza Papalis personal pan pizza!
Celebrating our 15th Anniversary with a much needed kid-free evening out. Oh how time flies! Luv u babe!
July 17 – Camping send-off
Annual Father & Son camping weekend, 46 fathers and sons bonding, creating memories, and building lasting friendships. Just good old fashion fun.
BTW, the long-awaited basketball re-match between the dads & teenagers was epic. Once again, the dads were victorious and remain undefeated; 3-Peat and took home the championship.
Happy 51st Birthday to the late Stuart Scott. His daughters @taeandsyd asked that we celebrate National Ice Cream Day to honor their dad. Rest in peace, my Brother. ’06 #ScoopsForStu #StuartScottLegacy
July 26, 2016
I got my first post-transplant haircut today. My hair has been growing for a while but was a little on the wild side. My new hair was essentially baby hair – very soft and straight. It had grown to maybe a quarter-inch, but did not lay flat, so it had that “Bernie Sanders” look. I faded down the sides and trimmed a little off the top. I’m still interested in seeing how it continues to grow in.
July 28 – Went to Port Huron
June 2nd was Ava’s birthday. We went to Red Lobster. I got permission from my doctors to try some lobster bisque. I was able to eat it, so now I have one more item on my menu. I’ve grown tired of chicken noodle soup.
June 18th was the first day of the American Cancer Society Relay for Life, held at Marygrove College. I definitely wanted to support the cause, so we stopped by for a very quick visit. We walked a few laps, then I went home and took a nap.
June 21st is Lisa’s birthday. We went to dinner at the Rusty Bucket. I was able to eat some cheese soup.
I spent the weekend of June 26th with my Dad. Lisa and the kids drove to her family reunion in Milwaukee.
We received some wonderful news this evening! Brandon wrote an essay, “If I Were Mayor”, as part of a citywide contest for Southfield 6th grade students. He won first prize! Brandon will receive an award at the upcoming City Council meeting and have the opportunity to read his essay.
I’m so proud of my young man!
I ended up being discharged from Henry Ford Hospital on May 9. What I was told would be 24-48 hours in the hospital turned into nine days!
My hands are almost all cleared up. The back of my hands are back to the normal color, and the palms have stopped peeling. Health wise I’m feeling better, but I’m still having trouble eating. The foods that I can eat are limited. For the most part, I’m living off soup, apple sauce, Muscle Milk, and canned Chef Boyardee lasagna. Still no luck with chicken, beef, pork, pizza, burgers, etc. Lisa has also started making me Häagen-Dazs milkshakes. I’ve been drinking one or two of those a day to help put weight back on.
I’m also starting to get some hair back. I noticed some fuzzy hair starting to grow.
Eight days later and I’m still here. Today is Mother’s Day, so it looks like I’ll be missing another holiday. My sister is here, so she stopped by the hospital with my folks. This stay on P2 was especially annoying. I was supposed to be here for 2 days, and most of the time that I’ve been here has just been waiting, waiting, waiting. The food has been terrible, so I haven’t eaten much. I should be going home tomorrow.
I started to get some of the test results back. The skin biopsy reveal that the infection is called Confluent and Reticulated Papillomatosis, a bacterial infection. They prescribed a pill, but the rash just seems to need to run its course. Some areas have already started to clear up. It seems to progress from the bumps, to the dark patches, then the skin dries up and peels off, revealing normal skin underneath.
Subsequent blood tests revealed that I didn’t have a blood infection, so the doctors were able to cut some of the antifungals and antibacterials that I was on. I had the PICC line put back in, so I was back to wearing hospital gowns again. The throat scope and biopsy did show a fungal infection, so they will continue to treat my thrush.
I also had one more thing pop up… my left eye started watering and became really red and irritated. This is the eye that I had surgery on, so of course I was concerned. Ophthalmology was brought back in and they had me go upstairs for an exam. They found a small scratch on my cornea, so they prescribed Vigamox eyedrops and an ointment. They will check me out again tomorrow.
Well, I’m still here. The doctors said I might be able to go home by Friday. They were still concerned about the positive blood tests, even though they might be false positives, so many specialists became involved. Yesterday I had a wave of specialists come in to see me. I had visits from Infectious Disease, Dermatology, Gastroenterology and Ophthalmology.
Infectious Disease was concerned about the blood test. The decision was made to remove my tri-fusion catheter, since it could be the source of the infection. I would be going back to a PICC line. This was done by Interventional Radiology. I will be a couple of days before the PICC line is put in, so I have a IV in my hand.
Dermatology was concerned about the skin rash. Over the past week or so the rash started to change. Instead of the dark bumps, they started to spread and fade together, becoming larger dark patches. They also weren’t sure what it was, so they took a couple of punch biopsies of my skin near upper chest and stomach. My first impression was that it seemed to be something spread by touch, since it was only on chest/stomach/groin/leg area and wasn’t on hard-to-reach places like my back. It also didn’t appear under my catheter dressing. We’ll know more in a couple of days.
Gastroenterology was concerned about my GI tract. I have a really bad case of thrush, which impacts my ability to eat. I also have something going on in my throat, and with the stomach issues they might want to scope my throat.
Ophthalmology was brought in to check my eyes as a preventive measure. They just wanted to make sure that I didn’t have an infection in my eyes.
My mother-in-law said when I first checked in that hospital never keep you for just 24-48 hours. They need to get their money’s worth. I guess she was right.
This weekend I started having stomach pain. I also started having more frequent bowel movements. The pain eventually became fairly constant, and very painful. It would often have me doubled over in the bed. I didn’t have a fever, so I held off on calling the doctor. Saturday night the pain and the frequent bathroom trips kept me up for most of the night, so I decided to call the doctor. Because of what was going on with my stomach, and the rash, and the eating difficulty, they asked me to go to the hospital.
I was assigned a room on P2 and checked back in to Henry Ford. I was told to expect to be there for 24-48 hours. I was hooked back up to the IV and lots of blood was drawn. My stool sample came back positive for C-Diff, so I was put back on those antibiotics. After a couple of negative blood tests, one of my blood samples came back positive for a bacterial infection and a fungal infection, so I was also put on those meds. It looks like I might be here for a while.
The bumps seem to be spreading down my chest. They now appear on both sides of my chest down to my chest plate. Still no itch. The doctors prescribed a different cream and a gel. They don’t seem to be making a difference, but the doctors aren’t concerned. It looks really bad, but doesn’t appear to be harmful.
On the eating front, I’ve started having a little more success with chicken noodle soup. Eating is still a huge chore. It’s been muscle milk, apple sauce and soup. I’ve had a couple small bouts of nausea, mostly when taking pills, but nothing major.