Dan Gennari will host the Georgia World Premier of ‘The Story’, a ski and snowboard film produced by The Ski Channel, to benefit the Leukemia and Lymphoma Society (LLS) on February 17 in Alpharetta, GA. Tickets are $25.00 each and include a $12.00 food and beverage voucher to use for dinner or drinks at the theater.
‘The Story’ is the first of a series of ski and snowboard films produced by The Ski Channel. ‘The Story’ stars Olympians Lindsey Vonn and Bode Miller, as well as ski stars Bobby Brown, Willie Bogner and the film includes documentaries on Bill Johnson, skiing’s greatest rebel and cult hero, and a look into the life of the late Shane McConkey.
Gennari has joined the Leukemia & Lymphoma Society Team in Training program and has begun training to complete a 100 mile bicycle ride around Lake Tahoe in June 2011. In addition to preparing for the ride, each team member is committed to raising several thousand dollars for the Society which funds research into the treatment of blood cancers like Hodgkin’s Lymphoma, which has afflicted Gennari for the past two years.
Haha, Father Time, you are a tricky old man…and I have been one of your favorite punchlines for the past two years. Let me just tell you something. That nonsense is over…OVER! I am taking the controls right now, and I intend to throttle up and leave your stinky tricks in the past. You’ve been notified, tell your friends.
This could turn into a long post. I have meant to write at least three times since my last post and I feel terrible that I have not. I am wondering what happened to the concept of the holiday break being relaxing. I can’t wait for Monday morning when life will return to it’s normal schedule. This routine of cooking, visiting, playing, eating, cooking more, entertaining, visiting more, giving gifts, receiving gifts, decorating, eating more, and so on is just downright exhausting. And to top it all off, one of the biggest business opportunities I have faced all year popped up on my radar around December 20 and has demanded my attention at only the most inconvenient times. I knew it was coming, and I was ready for 95% of what I would need to do, but of course, the client called my cell phone at 7PM on Thursday with a request that HAD TO BE HANDLED RIGHT NOW. And I was conveniently at Stone Mountain sledding and building igloo’s with Dominic and Angela and some of our friends. It got done though…thank goodness for smart phones like the Verizon Wireless HTC Droid Eris (Verizon please feel free to pay me for that endorsement or place an ad on this blog). We weren’t planning on working from around December 23 through this weekend, so I made a list of all the other stuff I wanted to get done. Most involved home repair projects, but others involved repair and improvement of myself. However, the crush of holiday obligations came after us and these 10 days have just flown by. The rest of this posting will highlight the things I checked off that list that I am most proud of.
But before I get started with that, I have to clear some air about my last post (Post Transplant PET Scan Results). I realize from the written feedback I have received on the blog and from the conversations I have had with many of you who know me personally that I came across as disappointed and perhaps a little downtrodden at the results. I was to harsh. The news really is good. It is the only PET Scan I’ve ever had that didn’t result in hand ringing or a more aggressive approach to treatment. That in itself is good. So please know that I am not sitting around here all depressed about my condition. It was not what I wanted to hear, but it was not bad news. Enough said.
Topic #1 – When I was in grade school, I played ice hockey part of the year, and street hockey most of the year. In ten full years living in the south, I think I have come across one neighborhood street hockey game. Can any of my southern readers say they have seen more stick action than that in their neighborhoods? Probably not. But up in Michigan, at least when I was in grade school, it was tough to drive through neighborhoods late in the afternoon because of all the PVC nets in the street and kids on rollerblades. Anyway, I have commented on and off for years that I would like to try playing again. When we lived in Florida, the only ice in the whole region was always booked for youth games and figure skating. So, I was excited to learn when we moved to Alpharetta, that there is a place called The Cooler, right here in Alpharetta where adults can play pickup hockey any day of the week. For Christmas 2008, Angela and her Mom got me a new helmet, hockey gloves and a stick and declared me ready to play again. Before I could round out my gear bag with the rest of the required pads, I got my Lymphoma diagnosis (two weeks after Christmas) and started treatment. There would be no hockey that year. When Christmas 2009 rolled around, I started thinking about those gifts again and I was feeling good, so I went to Play it Again Sports in Roswell, GA and found myself a pair of shoulder pads and shin guards. It still wasn’t enough gear, and money was really tight last year, so I put it off a few more months. Then I got sick again and spent six more months in treatment. Finally, Christmas 2010 is here, I’m not fighting cancer, and all my bills are paid, so I returned to Play it Again and it took two trips to find everything in my size, but, I got the rest of my gear, even a bag. And I got Dominic a super cool little camouflage tent. I haven’t given it to him yet and he doesn’t know I have it, but he talks about it all the time. Then finally, on December 29, last Wednesday, I signed in at The Cooler for the noon pickup game and I played ice hockey! It was a great feeling of closure to finally achieve a goal that I had set two years before and just couldn’t seem to catch. I was really really sore, and I had to quit only halfway through the two hour session because my legs had turned to jelly, but I did it, and I was proud of myself. And I think Angela was proud too that I had made good on her intentions from so long ago. I will be back sometime this coming week for more punishment!
Topic #2 – Back on the bike. Continuing with the fitness theme. As many of you know, I was just getting ramped up to start training for a charity century (100 miles) ride last summer with the Leukemia & Lymphoma Society Team in Training program, when I found out my cancer was growing aggressively and I needed to get a bone marrow transplant. I rode with the team on their first training ride a few days after I got the news. I had really really been looking forward to doing that ride last summer and honestly when I got the news about the cancer, I was just as upset that my plans had been spoiled as I was mad about having to return to the hospital. I have been anxious to start riding again, and attempted two rides in October, but could not make it more than two or three miles each time. I just couldn’t breathe. Now, I am breathing better and have been wanting to try out the bike again. So, on New Years Eve, the weather cooperated (it was 65 degrees and sunny in Atlanta), my schedule was clear and I hit the streets. My goal was to ride 10 miles…when I got back to my car, I had gone 16 miles! I love that between the hockey and the bike ride, I am feeling really sore from something that feels as good as these activities did. I am anxious to prove to myself that I am not just going to survive this cancer, but that I am really going to do well. I have never lost my motivation to join the Team in Training group for their 2011 century ride, but now I have the confidence to know that with enough practice and dedication, I will be able to do it. I admit, at about mile 14, I was seriously thinking about pulling over and calling Angela for a ride, so I know I have a ton of work ahead of me if I want to ride 100 miles. I will be signing my commitment forms this week to join the team, and the ride will take place June 5, 2011 in Lake Tahoe. There will be a lot more to read about that in the coming weeks.
Topic #3 – Review of Snow Mountain at Stone Mountain. This is mostly for Atlanta folks. We took our son to Stone Mountain for snow tubing at their Snow Mountain event. I would really advise that you abandon plans to visit Snow Mountain if you have been thinking about going. They charge $27 to get in (ours was only $17 because we have an annual pass), plus $10 per car for parking. That $27 ticket gets you 2 hours to use the snow slides, and they pack so many people into the lines, that it was taking us about 35 minutes round trip from the time we got in line, to when we finished our quick 8 second slide down the hill and got back in line. That means that if you start your tubing right at the beginning of your time slot (you won’t because it is a really long walk from the front gate), you will slide three times. And you will be hounded by their rules non-stop. I am surprised they didn’t have a representative from their insurance company out there making up new rules on the spot whenever he sensed anyone presenting the slightest risk of a breaking a fingernail. This was a total waste of time and money. Don’t go.
Topic #4 – Feeding Atlanta’s Homeless. As many of you know, Angela and I have a tradition of packaging up individual meals and hot cups of coffee early on New Years Day and driving around downtown Atlanta handing them out to homeless people. Angela has been doing this for eleven years, and I have been with her for the past nine. It is one of my absolute favorite things to do each year and I would not miss it for anything. I mean that. We used to buy McDonald’s breakfast meals, but in order to stretch our money to reach more people, we have started buying supplies in advance and packing the bags at home. Dominic helped us pack everything up on New Years Eve and he was an even bigger help passing them out the next morning. Watch this video of Dominic helping:
This year, we left the house with 48 bagged meals. It took us a little while to find the recipients because it was raining yesterday morning and the people were not in the places where we typically find them. However, once we did find them, we quickly ran out of meals. We could have easily used 100 more meals. This has been the case each of the past two years as well. There are just always more people than we can feed. So, a plea must go out. For anyone who has ever talked to us about this endeavor and thought it was a good idea, please consider helping us next year. We need more food, more bags, more deliveries. You will be glad you did it.
Topic #5 – Installing Replacing Windows. When we moved into this home in 2008, the home inspector told us that we should consider replacing the windows to gain energy efficiency. They are old double sash wood windows. And every window has real wood between each pane of glass. So, each sash is divided by two vertical pieces of trim and two horizontal trims. That makes nine little squares of glass. And then nine more on the bottom sash. Eighteen separate pieces of glass for each window. The living room has four windows, the sunroom has four windows, kitchen has five, etc. Right there with those three rooms, we have 234 pieces of glass to clean. Then there is the dining room, front room, 4 bedrooms, laundry room, bathroom, and about seven more windows in the basement. We don’t clean the glass. It would be like painting the Golden Gate Bridge. By the time you finish, it’s already time to start again from the beginning. Also, the glass is thin (noisy) and drafty (high energy bills). I will get to the point, we have wanted new windows, but we keep putting it off because it’s expensive right. The end of the year was coming straight at us and with it the end of the $1500 tax credit for energy efficient home improvements. Angela and I discussed a plan. Let’s get one window, and try installing it ourselves. If I do a good job and it’s not to hard, we can invest in more windows. So, I selected a small window on the side of the house that is in a closet. Yes a closet. This house has so many windows, somebody felt the need to have one in a closet. I picked up the 24 x 38 vinyl replacement window at Home Depot and the old window was out in about 20 minutes of work time. The new one took another hour of reading and re-reading the instructions, checking and re-checking the level and caulking the outside seams. All in all, not a hard job and I think it looks pretty good. So, I went back and got 7 more windows in that size for the kitchen, and two bathrooms, and I will get to apply 30% of the cost of those windows as a credit to my final taxes in a few months. Take a look:
After - Still need to paint the original trim around the window
Alright, I think I have written enough for now. I am going to sign off for tonight, but there will be more information about the Team in Training ride coming up this week. Stay tuned!!!!
Sometimes I start to think that I could be an oncologist, making a huge six figure income and treating patients with Lymphoma. Sometimes I feel like I have learned so much about this disease that I could be treating other people. But just when I feel really confident in my knowledge of what has happened and what I can expect to happen, a day like today comes along and I find myself suddenly scratching my head, looking confused and saying, “Huh?”
Monday morning, 8:00 appointment…the clinic was packed. For any of you who are taking this week off in preparation for the holiday, consider yourself lucky because the cancer shop was rocking like Best Buy on a Black Friday. It took a little over an hour and a half to finally see my doctor and the news was…she still doesn’t know if I have cancer or not. Talk about a let down. I was completely on edge. I couldn’t sit down, I couldn’t concentrate, I had a stomach full of butterflies, but I was prepared to here either of the answers I was expecting. Like I wrote last night, I was fully expecting a pass or a fail rating. Nope, I got neither. I got, “It’s still a little to early to tell exactly what is going on.”
Here are the technical specifics. There are two primary measurements taken in a PET Scan. The first is the SUV (don’t ask me what that stands for), which is the heat or activity level of the tumor. A dead tumor (remission) would have no measurable activity. My last PET scan in June after two rounds of salvage chemotherapy had an SUV measurement of 9.4. The measurement taken on Friday was 5.5.
The second measurement is the size of the tumor. My previous measured size was 8.4 cm x 2.6 cm, and today’s measurement is 7.1 cm x 2.1 cm. The doctor explained that she is happy to see the measurements declining, and she also suggested that the activity could likely be caused or increased by the radiation treatments I received in July. For anyone who has followed the saga of my mediastinal mass (tumor) for more than a year, you might remember this is exactly where we were one year ago. Exactly one year ago. The tumor had shrunk, it had slowed down its activity, but the doctors could not officially declare it in remission because it was still active. They told me then, that the activity could have been cancer, or it could be scar tissue from the biopsy surgery. We learned 5 months later that it was living, breathing and thriving cancer.
The plan is to visit Emory Winship again in February and just have a checkup. And then re-scan sometime in April to see if this trend continues or reverses or turns into a wild Gruffalo. So, the pessimist could look at this and say that my condition has made no improvement since 12 months ago, with a whole lot of suffering along the way. But the optimist says that these past 8 months were the first full crack at treating me the Emory team has had and the scan results are going in the right direction so I am on my way to being cured…it’s just going to take some time.
That is the question that has been on my mind all day…all weekend. I have to admit that time has flown by since the transplant. 100 days passed like the blink of an eye. I admit that during the bad weeks of my respiratory problems, I often thought time was moving slowly, but overall it really has passed quickly. I am getting more and more anxious about this appointment tomorrow and that is unlike me. I rarely stew over something and turn it over and over in my head, but this time I am. I am afraid of the options. I am more nervous about a ten second conversation I will have with Dr. Langston tomorrow morning, than I was the day before checking into the hospital for the multi-week transplant process.
I think I have had 8 PET scans since all this began two years ago. The very first one was done as part of the diagnosis to determine what type of Lymphoma I had (Hodgkins or Non-Hodgkins) and how far it had progressed (Staging – I was Stage 3, type B Nodular Sclerosing Hodgkins Lymphoma). The rest of them have all been to check on progress. The doctors used every one of those to find out how much my tumor had grown or shrunk since the last measurement. They were all given with the knowledge that I was not finished with treatment and that I still had more work to do. The other scans were mile markers measuring the progress of my cancer treatment. I reacted emotionally to each one, but in retrospect, those other scans were not expected to give a good or a bad result. They were simply used as indicators by the doctors the way a compass heading is used by a pilot or hiker. The results guided and directed the future of my treatment.
Tomorrow though, a whole different kind of outcome is waiting for me. I am thinking of this one as a pass or fail grade. Because the stem cell transplant was supposed to be the end. If it worked, then I pass, and should not need any more chemotherapy, any more radiation, any more medication or any more surgery. I will officially be in remission and will move on with my life and cancer will simply be something that happened to me when I was 31 (and 32, and 33). But if it shows any cancer at all, then the transplant must have failed. And I know that I can’t just leave some shitty old cancer in me, so it will be back to the drawing board to see what else the doctors have up their sleeves. If that is the case, I seriously hope they have a plan C.
I guess I don’t have to explain what I REALLY want for Christmas this year. Fortunately, my wait is almost over and I will find out my fate in the morning. I will find it hard to sleep, tonight!
On May 10 of this year, I posted my thoughts prior to visiting Emory to speak with my doctor about my first post treatment PET scan. Here is an excerpt of what it said:
Two people have told me that they have strong feelings that there will be nothing significant to be worried about. I feel the same way. I am feeling really good physically and I am ready to move on with life…I am a little nervous, but not a lot nervous. I have a strong feeling of what I think I know, but I guess I am also aware of the possibility that I could be taking a different path.
I did not get the news I wanted or hoped for that day and my summer turned from an armful of great expectations to a reality of sickening chemotherapy, radiation, blood transfusions, countless days at the hospital and a stem cell transplant.
222 days later, I am back to that same spot. I have come all the way around the circle of being treated and recovering from the chemical beatings, and now it is time to take stock of the situation. However, I don’t feel as good now as I did back then. I have made great improvements over the past few weeks but I don’t have the confidence in myself I did then. In May, I was feeling super alive. In March, I made a journey to Colorado and hauled myself hundreds of feet beyond the top of a ski lift at Keystone to the summit of the Outback peak and skied back down. Then in April, I started riding my mountain bike locally and by May, I had committed to training for and competing in a 100 mile bike race. Today, I am a little hesitant to try riding my bike any distance because I am afraid it will launch me into a coughing fit.
On Friday, I will be at Emory getting my first PET scan since the middle of the summer, and certainly the first since the transplant. It’s a big deal. No, it’s a HUGE DEAL. All the work the doctors, nurses, physician assistants, nurse practitioners, lab assistants, radiology technicians and hemapheresis team put into getting me through the stem cell transplant will now be tested. All the miserable and sick days I put my family through, especially Angela, Dominic and my parents may be justified now. And the effect of all those positive thoughts that each of you have directed toward me in our conversations and in your quiet moments will now be known.
The appointment is at 7:45 AM and it should be over by 9:30 AM, so by the time most of you read this, the deed will be done. I won’t know anything until Monday though. I go back to see Dr. Langston on Monday, and she will tell me what the PET scan says. Just as before, it will either show that the tumor has ceased activity, or it will show that the cancer is growing and I need to resume chemotherapy or radiation or who knows what. I kind of know what it would mean if the cancer was still growing, but I am not thinking about that option.
I have always had good intentions of putting more photos into my posts, but once a post is written, I never seem to think my photos are quite relevant to the writing, so I leave them out. So, here is a post dedicated only to the photo’s I took this past summer illustrating my adventure with chemo and cancer.
My port is on my right side. That is the one I have had since the beginning. And the newly installed tri-fusion catheter is under my left shoulder. This was used during the transplant period for infusing meds, chemo, stem cells, and drawing blood
Typical hospital breakfast. In fact, this is the standard hospital breakfast. If you forget to fill out your daily meal request paper, then this is what they send at 7 AM. I usually requested pancakes instead of this prize.
On the radiation table. The nurse took this photo for me before I was in position. The table I am on would raise me up and slide me back under that giant microscope looking thing to get blasted with radiation
This is the entrance to the Emory Winship Cancer Center. The Bone Marrow Transplant department is on the first floor, next to the labs. My usual routine is through the doors and go to the right to have blood drawn, then go to the left side of the building to have my doctor analyze the blood test. Chemo is also given on the first floor, but my transplant was done in another building
The Decatur Rd. entrance to Emory University campus. This is the pretty side of the campus. Like most college campuses, that means the older section. There are lots of walking paths here with gardens and a little creek. The other side of campus connects to the sprawling CDC compound
This was a visit to the lab right before VTEPA chemo in July. If you remember, that was the hardest chemo (even harder than the transplant), and they had to run me through lots of tests to make sure i was healthy enough to survive if they gave me all those toxins. This nurse drew 13 vials of blood in one sitting!
This was my mangy dog look when all the hair started really coming out in bunches. I went for a final mountain bike ride earlier in the day this picture was taken and the padding in my helmet rubbed a lot of hair off the sides of my head
A closer look at the mask and my alignment marks. The mask holds my chin up and out of the way of the beam. And the alignment marks are aligned with fixed laser beams in the room that ensure I am positioned the same way every day
My makeshift office in the hospital room. That is a bag of chemo hanging on the pole and being dripped through the tube into my chest catheter. This was one of the first few days of the transplant process before the drugs really started to hit me
Some good friends of our organized a Walk in the park with Dan event to celebrate Livestrong Day on October 2. Dominic led the walk in his police car.
Angela and I during the Walk in the park with Dan event one month after the transplant
Maybe I am overly sensitive to stories about others ailments and afflictions at this point but I don’t think my suggestion in this post is an over reaction. I have been involved in a number of conversations with different people at different times, all with the common thread that at some point we discussed someone’s unwillingness to go to a doctor. The cases were all different, the people were all different, but in all cases someone was unwilling to seek or accept medical help for a problem they knew existed.
I was in that same mindset in 2008. I knew that things were not right in my body, but I believed that overall I was healthy and that if I just lived with the problems I was feeling a little bit longer, they would go away or get better. Wrong. If I had taken the time and the care to review all my problems with a real doctor, my cancer would have been caught in an early stage. It probably could have been knocked out completely with 6 rounds of ABVD chemotherapy, and I never would have needed a stem cell transplant.
I don’t care what age you are, whether or not you exercise and eat right, or if you have checked out your own problems on WebMD or heard Sanjay Gupta say something on CNN that pacified you about your condition, if there is something up with you, go get it checked out. End of discussion. No excuses. I also don’t care how much you like or dislike going to the doctor. Nor do I care what you think about the new healthcare bill, the president, health insurance policies, needles in your arm, your doctor’s punctuality, exposure to x-ray, or Crocs as workplace footwear. Go take care of yourself, because NOBODY else is going to do it for you and that problem that is a minor annoyance now, could be growing into a major threat to your health or your lifestyle. And if it gets to the point where your life is threatened by a disease or a condition, it is those around you, who love you, who will suffer the most.
Lots of people just don’t like going to the doctor. Sure, there is plenty not to like from the smell, to the poor attitude of the temp at the check-in desk, to getting your skin punctured with a needle and the potential for more discomforts. But try not to think about that. I did my best to ignore the momentary pain of any procedures that were required and focused instead on the fact that I was fighting off an enemy that was out to harm me and my family. Re-direct your focus and your expectations. The science and technology is here to allow you to live a life free of impediments, so take advantage of that.
I am not saying that everything can be caught, treated and cured, but for your own sake, give it a try. For those who love you and want you to be around for a long long time, do your very best to take care of yourself. And never take health for granted or assume that good health will always be with you. Bad things can and do happen to good people. I was recently reminded of just how fragile our time is by the unexpected death of a friend and neighbor. Witnessing how hundreds of people deeply grieved his passing reminded me to brush off this post and finish it. Treasure your life, your family, and every day you are given.
I am working on my birthday. I am leaning over my computer in a nicely decorated boardroom at the Sheraton hotel in Tampa, while one of VenueQuest’s clients and all their respective association members hold their meetings, discussions, roundtables and speaker panels throughout the hotel meeting space. But that’s okay with me…I am happy to have gotten a birthday.
Plenty of people in their thirties, and especially those in their forties, look upon birthdays as mile markers to old age and the loss of something they wish they could have back. That’s a pretty depressing perspective. Some are mourning the loss of youth in general. Some look back fondly on days of spontaneous freewheeling lifestyles, to body sizes and fitness levels they secretly know they will never experience again, to a time when they had more hair, less wrinkles and unlimited stores of energy. Again, why look back? You probably won’t find anything back there that will make you feel better about today.
But I know that I am truly celebrating this birthday as a gift all of it’s very own. I GOT another birthday. And while I never really doubted that I would survive my adventure with cancer, I have to respect that I only survived thanks to the abilities of my doctors to use the science, technology and resources at hand in 2010 to confidently overcome the beast. This was not a disease my own immune system would have eventually defeated. This is a disease that would have killed me dead. And so for that, I am grateful to be given another year, and will celebrate every forthcoming birthday as another gift, another mile marker toward living a complete, fulfilled and happy life. I will be spending the weekend with my little man Dominic, and my lovely Angela in Orlando. They are meeting me at the conclusion of this conference and we are taking a three day family retreat to Mickey Town.
For those of you who know about this trip and gave me no sympathy the past few days, and wished that you could go on this trip…I would gladly trade places with you right now. In order to buy a plane ticket from Atlanta to Honolulu with only about 5 days notice, and not spend VenueQuests entire travel budget for the year in one shot, I turned to Expedia’s ability to link together otherwise unconnected airlines and prepare a ticket based on the lowest priced segments available. So, in my quest to get from Atlanta to Honolulu, I first stopped in Phoenix which was acceptable. But from there, I flew to Maui, which is where I am now. In about an hour, I will board another flight to the island of Molokai for yet another layover, and then finally board the last leg to Honolulu. I left my house almost 15 hours ago, and really don’t even want to think about how long this whole flight itinerary will take.
Why am I suddenly going to Honolulu? VenueQuest has a business opportunity to provide more lodging management for the Navy, and before moving forward with that, I need to inspect the hotels that are in line to provide the lodging. There was a serious quality problem with the last hotel we set their people up in because it was not inspected prior to booking and I don’t want that to happen again. So, my inaugural trip back into the travel world is a doozy.
Maybe I will learn a little more this week, but I have struggled in the past with understanding why people in the eastern United States vacation in Hawaii. This place is a pain in the ass to get to. And for those of you who travel to Asia, you must have super butts. I should stop this, I sound old and cranky, and I am probably risking having our travel agency license revoked by speaking poorly against Hawaii travel. But honestly, you can reach most places in the Caribbean within about 4 hours from the eastern U.S. Is Ka’anapali better than St. Lucia? I don’t know…I guess more research is needed.
Normally I would be really excited about these little connecting flights between the islands because they are only about 20 minutes each and probably provide excellent sightseeing, however, I am still in the terminal and it is already completely dark outside. At best I will see the flames from tiki torches along the beach in front of the big resorts. However, when the end of the day comes, and every minute between now and then, I am grateful for the simple fact that I am doing this. 30 days ago I had recently left the hospital and was still feeling like a lump of dog poo. And I am mindful of two friends who are in hospital rooms at this moment, dealing with their own blood cancers and I desperately wish for their full recovery so that they too may resume a life of complaining about trivial things like flight layovers.
Wednesday started with a nearly 90 minute wait/drive through traffic to reach Emory Winship Cancer Institute for my next check up. The nurse practitioner was really pleased with my labs and all blood counts. For anyone keeping score, my white cells have comfortably settled into a completely normal count in the mid 5,000’s. Red blood cell indicators are still technically on the low side of the normal scale, but they keep increasing. The NP was so happy with the progress that she wanted to share it with my doctor. I was not scheduled to see the doctor today, but she went out wandering the hallways to find her. Getting an impromptu visit from the oncologist, who also happens to be the Medical Director of the cancer institute is pretty impressive because she stays busy. Normally, I would think this kind of butting into her day would be reserved for the times when there is suddenly BAD news to deliver and the nurse goes off to find the highest pay grade doc available to deliver a message.
So, Dr. Langston comes in and she is all smiles and positive energy. She declared that they are cutting me a long leash now and that I am free to pretty much go about life like a normal person. My only restrictions at this point are that I am not allowed to dig in dirt or otherwise get up close and personal with dirt, bugs, fungus and molds. She also asked that I avoid pooper scooper dooty like picking up after dogs, cleaning litter boxes and changing diapers. And finally, she said I cannot have raw sushi or uncooked meats for six months. This is the only disappointing restriction, but I can live with it.
Remember when I wrote some time ago about never getting any good news at the hospital. That is finally changing. This evening I went out to dinner with the Young Adult Cancer Survivors (YACS) of Atlanta. This is a great group of under 40 cancer survivors. I first joined in on their outings last winter, and then missed every monthly function until August. I had dinner with them the day before going in for my transplant, and surprised everyone by showing up again tonight. My recovery normally would have been longer and I would not have been allowed out into the world for something as threatening to a poor immune system as pizza with a group of over a dozen people from all walks of life. Three others at the table had also been through stem cell transplants, and Shawn who made a deliberate point last month of stressing the importance of doing my mouth rinse many times each day, officially declared me a rock star for being out and about on Day 28 following the transplant. I think that is pretty cool, because I give a lot of the credit to my quick recovery toward his serious forewarnings about the mouth rinse. Shawn is a tall guy and several times while in the hospital, I thought about him standing over me at the dinner in August, waving his finger and saying, “Do your mouth rinse, do your mouth rinse, do your mouth rinse.” And I did. I kept up with it 5 or 6 times per day, and I never got mouth sores. Certainly that was a contributing factor to getting me out of the hospital quickly and on the road to recovery.
I am feeling like a normal person now. My mouth has fully recovered. I am not sensing anything weird about any particular foods, not even ketchup which is usually a worst offender. And the doctor doesn’t even want me to come back for another checkup until a month from now! A whole month with no trips to the doctor, no chemotherapy, no needles, no infusions, no changing schedules, no side effects, no cancer!!
It is strange to think that I may really be done, that I may not have Hodgkins Lymphoma. My journey through cancer treatment is very possibly completed. If the transplant did what it was supposed to do, then I should not have any active and reproducing cancer cells in my body. If that is the case, then it will be the first time in at least two and a half years, possibly more than three years that my body has not been home to this disease. But you see from my language here…I cannot bring myself to say it. I have had no problem declaring to anyone and everyone throughout this process that I will win and will overcome the cancer, but now that the time has come, I am not willing to use such assertive language to claim victory. Not yet. I am very rarely superstitious and prefer to put faith in myself to overcome problems over any other solution, but I feel hesitant to provoke the cancer. Nothing has been proven yet, so I am cautious not to claim victory to soon. Like any confident competitor, I am making plans for the victory celebration, printing the world champion t-shirts and preparing my sound bites so that I am ready when the proof reveals that I have won, but I am keeping it all under wraps for now.