Moving to a new site

This will be my final blog post at this web address.  As I have been threatening for many weeks, I have made a number of changes to my blog and one of those is to move it to its own dedicated domain at www.dangennari.com. 

I have eliminated or consolidated many of the extra pages on the site to cut down on the amount of navigation needed to enjoy the website.  I have also simplified the categories into just a few main sections.  The look of the blog is not quite what I want yet, but that is easy to change.  Please change your bookmarks update your RSS feeds.  Enjoy.

 

I’m Sick Again

Ha, Gotcha!  No, not that kind of sick.  I have a cold.  In fact we all do.  Angela, Dominic and I are all sniffling, coughing and wiping our noses.  Well, Dominic does not wipe his nose.  He does not like tissues for some reason and says, “Tissues are kind of tricky.”

So, now that I have been given a hall pass to life and am going to spend my time not being a cancer patient, what am I going to do, and what is going to happen to this blog?  Well, the blog will remain.  I have said before that I started it because of the cancer, but I have come to really enjoy sharing slices of my life, so I am going to keep it up.  I do plan on making changes…I know I have been threatening that for a few weeks now, but I took a big step toward that this weekend.  I have a new hosting service and will be registering a new domain name for the blog hopefully on Sunday.  I will then migrate all archived posts over to the new location and resume posting from there.

And what will happen to me in general with my new freedom.  That is a good question with a complicated answer.  I now believe that there is no normal.  I have no intention of trying to regain the same life I had pre-cancer.  Even if I wanted to do that, it would be impossible.  I have new baggage, new insight, new responsibility and new ambition.

I am working on a plan for what the next chapter of my life will include.  I will certainly be sharing the plan here, but not yet.  I have lots of changes to make and those changes involve some private discussions with a number of people close to me before I make any of my plans public information on this blog.  That will happen very soon, but until then, I am focusing on maintaining health through diet and activities.  I am making a conscious effort to avoid sugars because if there are any live microscopic cancer cells in there, I don’t want to give them anything to feed on.  I am also trying to include one glass of freshly juiced vegetables each morning (thanks Renita), and a cup of green tea once per day.  I also want and really need to exercise some more…simple things like an extra long walk and light bike rides.  But, as soon as my side is fully healed up, I want to start playing some tennis.  Anyone interested in playing a game with me?  It will probably be at least another week before i can attempt tennis.  The surgeon left four cuts in my right side, and the chest tube must have caused some bruising or something because I still get an odd irritation right across the surface of my ribs.  Certain twisting motions can cause a pinching pain, and it hurts chest and back to run, so I would make a lousy tennis player right now!  But by next week I should be ready.

The project I am most excited about right now is the cancer/wellness organizer.  I have received some good input and suggestions, and received a generous endorsement from the old man that is going to allow me to get this project off the ground.  Angela came up with a name last night and it is pending approval right now.  I will share that info soon as well.

I guess this post is not sharing much news, just dropping some teasers that news is coming.  That will have to do for now.

Overflowing With Happiness

It is Sunday morning and my euphoric feelings from Friday have not stopped…in fact, things have gotten much better.  I continue to have these little revelations of things I can do and my wounds are healing very fast, parially by sheer will I believe.  Yesterday morning I spent a good bit of time in the yard with Dominic raking leaves into a pile and then re-raking the pile after he jumped, dove and ran straight into it.  I just kept raking.  I don’t even want to get rid of the pile because he is having so much fun with it. 

The day went along like you would expect a typical Saturday to go until around 6PM.  Before leaving for her trip earlier this week, Angela asked me if we could delay celebrating my birthday (which was on Wednesday), to Saturday.  This was fine with me because on Wednesday my surgery incisions were still quite sore and she was going out of town.  So, she made plans for us to go to Aqua Blue, a sushi and seafood grill near our house, and then to catch some music at Londzells.  Renita offered to take Dominic for the evening so we could be on our own agenda.  I was really looking forward to this and the anticipation reinforced the good mood I was already in.  Late afternoon comes and I packed up Dominic in the car and took him to Renita’s house.  By the time I returned it was just past 6PM and when I walked into the house, Angela had put away all Dominic’s toys, turned on some jazz, candles were lit on the table and some others were flickering near the kitchen.  And on the table, there were little dishes of snacks; some crackers, grapes, cheese, a crazily delicious pepper jelly spread that we really like.  I thought it was a little strange that she had done all this since we would be leaving to go to the restaurant soon, but it looked nice, the candles smelled nice, the music was good, I was in a great mood, so I complimented her on her work and said I was going to go and get dressed for dinner.  I go to my closet and pick something out.  At one point, Angela yells over to me from the bedroom, “Hey I’ve got a surprise for you, stay right there.”  Now remember, I am in my closet.  I finish dressing and she has not returned, so I try calling to her to see if she really meant for me to literally stay in my closet but she doesn’t answer.  Angela is pretty good at coordinating surprises (Within five minutes of that thought, I would be elevating that opinion to – Angela is the grand master of coordinating surprises).  After a few minutes, I have to use the bathroom, so I leave the closet and go over to the bathroom.  I am trying not to look around at all, not wanting to get myself in trouble for busting the surprise to soon, but there is no sign of her.  I come out of the bathroom and finally she calls from the kitchen and says I should just come down there, so down the stairs I go, wondering what she could be doing.  And as I am walking down the hallway to the kitchen she says, “I might have invited some other people to dinner with us,” and I turn the corner to find Joe and Gemma standing there in my kitchen holding out a glass of prosecco for me!  Now for those of you who don’t know Joe and Gemma, they are our very good friends who we love dearly, but who live in San Francisco!  But they were in my kitchen last night! 

The snacks and wine now become a little more obvious and it occurred to me that maybe the dinner I thought I was going to with Angela was just a smokescreen, but it turns out we really are going to Aqua Blue.  But when we get there, Madison and Beverly Wilhelm and Stacy Bowers are sitting there waiting for us!  They are neighbors of ours here in Alpharetta and wonderful people.  We get wine, we get sushi, we get some kind of little crack infused warm crab dip, and we are having a great time.  I keep glancing around at everyone there wondering if this is real. 

But wait, it gets better!  After I finish my dinner, Angela slides a little envelope in front of me.  I start to open it, and I am sure I am not the only one who tries to predict what a gift will be while I am opening it.  This time, I am thinking, I bet this is a gift certificate for a massage.  She has given me gift certificates like that before and I always appreciate them – and they fit perfectly in an envelope.  Well, nope, it’s not a massage.  I am reading it and it is a voucher for a three night/four day vacation at the Sol Melia Playa Conchal.  That is incredible!  I immediately think, “Cool, I don’t know much about Punta Cana, but it is supposed to be nice.”  For some reason I thought this resort was in Punta Cana.  Then, someone else at the table asks, where is that and Angela says, “It’s in Costa Rica!”  WHATTTT!!!!! 

COSTA RICA!!!!  Again, some history, Costa Rica is a special place for me.  I have been fascinated with the country since the late 90′s and have done a lot of research about it.  At the time that Angela and I met, I was starting to make plans to move there.  I wanted to go live in another country for a year or two and that was the country I chose.  You may have guessed that my plan changed when Angela came into the picture.  But we did take a vacation there, we got engaged there and it is one of those places that is always in my mind as a destination I know I want to go back to.  In fact, returning to Costa Rica for another visit is #55 on my life list on this website.  And now it is going to happen.

There is no questioning the fact that I am the happiest person in the world right now.  And that is one hell of an achievement considering my state of mind just a few weeks ago.  I still have problems, and they are significant.  From the point of view of a normal life, I have some serious obstacles to overcome yet, but the difference now is that I remembered how to be happy.  I forgot that critical life ingredient in October.  I succumbed to the idea that my life had become pitiful and that all was lost.  I have had several good experiences over the past few weeks to remind me that life is good, but it is only as good as what you make it.   These experiences, and some world class motivational speeches have come from my wife Angela, who, if I did not fully know it before, I now know to be the best woman and the greatest wife a person could have.  At certain times over the past six months, she has frustrated me because she pushed me to do things I did not want to do.  At those times, I would sometimes think, doesn’t cancer give me a pass to just be idle for awhile.  In retrospect, those were exactly the moments when I needed her to force me to be tough.  This year has been much more of a mental test, than a physical one.  I hope I passed.

I took a significant step this weekend in establishing my new cancer journal/organizer concept and I know that will be an important ingredient in my new life.  I also received some unexpected praise from my mom and one of my cousins – same compliment on the same day – that have injected a shot of energy into my entrepreneurial tendencies.

Today, we are going to pick up Joe and Gemma and go on an adventure up to Tallulah Gorge to hike, take in some fall scenery and experience some deep south cuisine.

Freedom!!!!!!!

The biopsy results are in!

Dr. Langston called me today to report the results of Monday’s surgical biopsy.  The third and final piece of tissue (mediastinal mass for those of you paying close attention) proved to be non-diagnostic just like the previous three samples.  She explained that they looked and looked and looked at every part of the sample and could not find any evidence of live cancer cells.  However, that does not necessarily mean that I am cancer free.  She confirmed the report from the surgeon that the mass/tumor is very hard due to extensive scarring caused by the 16 chemotherapy treatments.  The PET scan in September showed cancerous activity in the mass, but the biopsies have not been able to pinpoint any physical evidence to confirm the scan results. 

The doctors analysis is that she cannot tell me that I DON’T have cancer anymore, but she also cannot tell me that I DO have cancer.  There is simply no proof either way.  So, the plan for now is that I am just going to take my life back, stop going to the doctor every week and live and work like a normal person!  I will have a follow up appointment to speak with the doctor in one month, and then a full PET Scan and hi-resolution CT Scan in two months.  The purpose of those scans will be to see if there is any detection of new cancerous activities.  That would indicate that the cancer was not eradicated, and that I will need to resume treament of some sort.  That would also be the case if I start to notice a return to the physical symptoms I had before diagnosis.  If the cancer is not gone and starts to spread again, the doctors hope that it will manifest in an area that will be easier to biopsy so that they can once again try to attempt the new diagnosis. 

So, they are not saying I am in remission, and they are not saying I am cured, but they are saying that further testing and treatment will not yield any new information, and until new information provides the doctor with an indication of what should be done with me, I am at very little risk of harm.

Everyone knows the expression about having a weight lifted from your shoulders, and I certainly fall under that category today.  All afternoon I have been thinking about this news and realizing both the small and big impacts it holds for my happiness, and I keep smiling as new realizations form in my mind.  I will share a few:

• The most obvious one, the threat of being tossed into the hospital for a rigorous 5 day chemotherapy regimen is simply gone
• Christmas will be a lot more fun
• Several of my family members from Michigan have planned a trip to come and visit us over Thanksgiving.  They booked the trip when I thought it was pretty likely that I would be wrapping up my first round of the deep chemo because they wanted to come and try and cheer me up.  It was a very generous and caring gesture, and I am delighted that I will now be able to fully enjoy their visit, rather than be holed up in a chemo fog
• I can get back to doing the things I like to do and the things that will build my new life, and not be as encumbered with treatment schedules and doctor appointments
• I can get haircuts again.  I like getting haircuts for the brief escapism of the experience, but I have only been to the barber shop once since January.  Well, that is until this afternoon when I went again!
• I have not written about this before, but one pillar of my depression over the past several weeks was due from the fact that a bone marrow transplant is nearly certain to result in sterility.  While the chemo treatments I have already received have temporarily stopped production of sperm, it is expected that with time that will resume.  When I was headed for a bone marrow transplant, there was not going to be enough time for my reproductive system to recover.  I now feel that I have been given another chance of providing Dominic with a natural brother or sister.

I have written a lot recently about the despair I have been feeling.  And most of the ancillary problems in my life that have developed because of the cancer or have been intensified because of the cancer will continue to be problematic for some time.  But today, I feel like I suddenly and abruptly stopped digging.  With the open ended timeline of when treatments would start, how long they would last, how hard it would be on me, I have really had a difficult time figuring out how to strategize work, finances, family obligations, and fun of being a person.  I felt that I was in a hole, disappearing below the surface of normal life, and every day the whole just got deeper and deeper.  But today, it stopped getting deeper. 

I already have ideas on how I am going to climb out, and then fly, and I plan to start putting that plan in place immediately…tomorrow (actually I already started!).  So the world better look out because Dan Gennari 2.0 has just received clearance to taxi to the runway and takeoff.  I am excited about what I will do with the next phase of my life, even though I don’t yet know exactly what I will be doing.  I have a whole new perspective on stress and what is important in life and that is going to make decision making easier for the rest of my life. 

This is good.  I feel good today.  My back and side are still physical reminders that I have been through something significant this week, but that discomfort has been reduced to a vaque muscle soreness like when you work a little harder than usual and your body aches a few days later.  I am ready to take on the world!

Biopsy…again

It is Tuesday morning and I am in the hospital.  I had the biopsy early yesterday morning.  As of about 8AM this morning, I started to feel pretty good, prior to that, I was all misery.  I woke up from the surgery around 1PM yesterday afternoon and spent about 3 hours in the recovery area drifting in and out of sleep.  They kept telling me they were trying to get a room for me and we would be moving soon, but then nothing would happen.   Finally, they found me a room in the ICU and I went there, even though I was not really an ICU case.  Things were pretty ugly for awhile.  I was in a lot of pain on my entire right side between my waist and neck.  The thing that hurt the most was the back of my shoulder, not sure why.  They gave me some morphine and some percoset but the pain just kept on coming.  I mostly just tried to sleepp and lie still.  Angela came to the hospital around 5 or 6 PM and it was really nice to see her.  A pretty, smiling, friendly face was a welcome sight after the parade of nurses, RN’s, NP’s, PA’s doctors, and whoever else came to see me yesterday.  I had some nausea and threw up once in the evening and then again just before midnight.  But I was only eating ice chips and water all day so it wasn’t so bad. 

I don’t know if one of the nurses just was not paying attention to what I was saying, or if I was not coherent enough to speak clearly, but I was annoyed with her trying to give me something I did not want.  Eventually I moved to a regular room and that was painful because they insisted on using a wheelchair.  I don’t know why that bed couldn’t roll out of ICU, just like it rolled in.  And what was even worse, the wheelchair was borken.  It was missing the foot parts and they couldn’t find another one so they said just hold your feet up.  No problem for a healthy person, but really annoyng to me because of all the other idscomfort I was in. 

Nighttime was bad too.  Lots of interruptions and people coming in and out of the room.  I am feeling better now though, although I feel myself getting sleepy again.

Took a break to sleep and now I am back.  So, my experience here has been less than fun, but what were the results of the biopsy…that’s what we all want to know right?  The surgery did not go exactly according to plan.  The first sample of the tumor cut out by the surgeon was given to the pathologist and was determined to be non-diagnostic, just like three weeks ago with the needle biopsy, so they decided to try again.  The surgeon put all his tools back in and cut out another piece.  That second piece also was determined to be non-diagnostic.  The pathologist asked for one more and the surgeon agreed but was only willing to go in one last time.  That piece was preserved to send the special lymphoma pathologist in the cancer building so we don’t have the results yet.

The surgeon explained that if that third piece is also non-diagnostic, then I would probably have three options.  One, get a bigger, more invasic surgery where he can get access to cut out a larger piece, two, proceed with the bone marrow transplant without a biopsy determination, or three, sit back and wait a few months and see what happens.  That last option is what I am hopinig for because to me it seems that that would be some sort of indication that I am winning.  Of course, these are the recommendations of the surgeon, not the lymphoma specialist, so I still need to listen to her opinion. 

After surgery, I had a rubber tube coming out of my back that connected to some sort of advice about the size of a briefcase that was draining fluids and blood from the wound.  That tube is what was causing the most discomfort and fortunately, the nurse came in and pulled it out around 9AM today.  I now feel really good considering the circumstances.  I am not really in any significant pain, I’m not hooked to any devices, not even an IV, and I am just waiting to be taken downstairs for a final X-ray.  Once that happens, I can pack up and leave.

I have lots of bandages on my right side, and will be sore for a few days, and I am not supposed to lift anything to heavy for awhile, but otherwise I am ready to move on, with whatever movingon entails.  I am okay with doing the transplant if that’s what it will take to make me better, but man it would be sweet if this is the end of cancer.

Time For Some Answers

I will keep this brief because I am due to check in at the hospital at 5:30 AM, so I need to get to sleep.  The biopsy is first thing tomorrow morning.  If the initial examination of the tissue (performed in the operating room while I am still sedated)  finds real live Hodgkins Lymphoma cells, I could be starting chemotherapy again right away.  If the initial test is not enough, then it could be a week until I find out what is supposed to be done.  I have been disappointed enough times this year that I know it is reckless to get my hopes up for any particular outlook, but I really feel good lately. 

But just in case my immediate future involves chemotherapy, pain medication, throwing up and hospital food, I made sure to enjoy today and this whole weekend.  Dominic was a super fantastic little Batman for Halloween and this year he definitely got the whole concept.  He went out with his older friends Camden and Owen and when he realized that their parents did not accompany them to the front porch of every house, we were quickly instructed to “stay up there.”  There, being the top of the driveway with the other parents. 

Today, I raked a huge pile of leaves and had a good time playing in the yard with Dominic, and helping Angela clean up the garden.  It was sunny and warm all day long and it felt good to be out there.  It will be a good day to remember and hold on to if my days become a little muddled.  Wish me luck…goodnight!

Charleston – Part 2

First some housekeeping.  The posting called Scary Thoughts was supposed to have been published on Wednesday night.  I just noticed that it was saved but not published.

Day 2 in Charleston started in our wonderful room at Francis Marion hotel.  Did I mention that we also got upgraded to a suite.  Very cool, very awesome.  I wonder sometimes what will happen when Dominic starts traveling on his own and is subject to standard rooms.  I am not saying that we always get upgraded, but usually we are staying in hotels in relation to some kind of program or conference and it is not uncommon for us to be placed in a very nice and spacious room. In this case, we were on the top floor in a two room suite with a full kitchen and four windows looking out over the entire city of Charleston.  I think I read that Francis Marion is the tallest building in Charleston, so there was nothing to block the view from up there.

We had a breakfast of coffee and pastries at the Starbucks in the lobby and then started walking toward the market.  On our way there, we passed a firehouse and spent a lengthy 15 minutes looking at the firetrucks and reading some plaques at a memorial park next to the firehouse.  I was impressed to see that this firehouse still had the old brass pole from the sleeping quarters upstairs to the truck garage down below.  We later learned that this firehouse is the oldest firehouse in the country still in operation.  And the memorial next door was for a group of firemen that were killed in 2007 in a large furniture warehouse fire.

There is a street called Market, actually North Market and South Market and in between the two is a narrow row of pavilions housing dozens of merchants and shopkeepers.  We tried on lots of big hats in a hat shop, watched some basket weavers put together their various shaped baskets and saw some unique gift items.  Dominic was starting to get a little antsy, so I packed him up and set out to find a carriage tour.  He was very curious about the horses and the carriages, so I used a coupon the concierge had given us and got myself a ticket, he was free and we climbed aboard for an hour long tour of the city.  It was definitely the most educational hour I spent during the trip and one of the most enjoyable.  Dominic was very good throughout the tour and even asked a few questions to the tour guide.  We learned about the earthquake in the 1800′s and how the buildings were pulled back together instead of being cleared out and re-built.  We also learned about some of the unique markings on the homes that designated the profession of the owner of the house, and heard lots of colorful stories about past residents of the town.

For lunch, we stood in line for Hyman Seafood.  I had never heard of it before going to Charleston, but apparently it is a pretty big deal in town and seemed to be the “it” place for everyone to try.  The menu was pretty extensive, but I though the food was just average.  I didn’t see what all the hype was about. Maybe the 30 minute wait to get a table soured my opinion a little.  After lunch we kept on walking south to the Exchange, an old building that was constructed by the British many centuries ago.  It was gone through many incarnations, from warehouse, to shops, to offices, to prison and today is a museum.  We took the guided tour and learned that it was the site of many historical events including a reading of the Declaration of Independence from the front steps to the residents of Charleston.

Dominic fell asleep during that tour, and when it was over, we started slowly walking back toward the hotel as it was getting a little chilly and we were very tired of walking.  We went in prett early that night because I think we were all exhausted.  Tuesday was a pretty simple day.  More walking and exploring.  We had discussed crossing the river to go see the aircraft carrier USS Yorktown, but it was cold and we were doing our best to keep the costs of our weekend getaway as minimal as possible.  So, we strolled more of the little streets and finally took some photos of the most interesting parts of the city.  We stopped for a simple lunch and then went back to the hotel to retrieve our car.  The ride home was miserable.  It started raining about 15 minutes after we got on the road and got steadily heavier until at one point it was just sheets of pouring rain in the dark.  We stopped to take a break and get off the highway at that point, and did not get home until after 9PM.

All in all, Charleston was a nice city and I am definitely putting it on my list of places to return to someday.

 

Scary Thoughts

Just in time for Halloween.  Once again I have not posted in a few days and there is a lot I want to share.  But the thing that is working my mind the most today is something that is making me feel so good, it is kind of scary.  Around 4:00 this afternoon I was outside with Dominic and he said he wanted to go for a bike ride.  At first, I started getting all of our bike gear together to put in the car and go up to the park like we usually do.  But then he said he wanted to ride in front of the house.  So we did that instead.  When we go bike riding together, it is me on top of my mountain bike and he is getting towed behind in a trailer.  While we were riding around in circles here in the cul de sac, I got the idea to try riding up the hill.

Now, if you have never been to my house, let me explain the topography of our lot.  Our house sits somewhat in a hole.  To the north, south and west of the house are very steep hills.  The ones on the north and west rise almost straight up.  They are so steep, that you probably could not walk up these hills without the assistance of a rope or at least by clinging very tightly to the tree limbs to help pull yourself up.  The hill to the south is not quite as steep but is probably close to a 9 or 10% grade, which is pretty steep for a road.  When we moved in, the moving truck driver was unwilling to drive the moving truck down the hill because he did not think his brakes would hold up for the entire descent.  So, now you know what the hill is like. and here I am at the bottom, on my 12 year old mountain bike with its steel composite frame – not aluminum, not carbon fiber…steel composite.  and towing a 36 pound boy in a 20something pound trailer and I am pondering climbing this hill.  The hill has intimidated me since the day we moved in and I have not attempted to ride it in the 15 months we have been here.  I don’t even like walking up, and that is why our dogs rarely get walks anymore.  So, I make a few loops around and shift down, down, down into the lowest possible gear that works without popping the chain, and then I just go.  I had no intention of doing it fast, but something in me said to go up that hill and I just started going, and going, and going.  I did not stop, or rest, or put my feet down to help push, I just turned the pedals around, one revolution at a time.  I grabbed my handlebar extensions to shift weight and put a little more torque into the pedals and just kept going.  Before I knew it, I was halfway up the hill, then I was past the last curve (oh yeah, in addition to being mega steep, the road also curves a little).  I took a glance upward and after that curve, it was a straight shot of about four house lengths to the top and just kept turning the pedals and a minute later, I was cresting the top.  The pedals started to turn freely, I didn’t feel all the weight of the trailer anymore and there was no hill left to climb.

I was so happy and excited I did not want to get off the bike, so I turned onto the main street through the neighborhood and sailed down the street in another direction.  I wound up riding all the way to the park before taking a break.  There was one other long climb along the ride that was twice the distance of the first climb, but not nearly as steep, and a second one like that on the return trip.  But I never got off the bike.  My breathing did not fail me, my legs had the strength to do the ride, my heart didn’t beat wildly out of control and I succeeded.  I have been walking on air ever since then.

So what you ask is the scary thought?  Here it is.  The thought that keeps going through my head as I replay that ride over and over in my head is, “How can I be sick?  A sick person could not have done that!”  I know I could not have done it six months ago.  I know I could not have done it a year or more ago, long before I was diagnosed.  They say there is a large tumor in my chest.  A symptom of this disease is shortness of breath.  That is a fact, and I have had that symptom, but not today.  I was already thinking along these lines because for the past three days, we have been on a mini vacation in Charleston, SC and I spent a lot of time, and logged a lot of miles walking the uneven sidewalks with Dominic on my shoulders.  It wore me down eventually and I had to take some breaks, but I wasn’t being battered by it, the way I used to be.  The scary thought that is in my head is, “Maybe I don’t have this cancer anymore.  Maybe the chemo did work.”  But I don’t even want to think that way because some very smart people and some advanced machines suspect I do still have the cancer and I don’t want to fool myself into a situation where I will be getting setup for another big disappointment.

But I cannot help it.  I cannot help but fantasize that maybe I am cured, and maybe I am healthy and about to return to normal life activities.   I am going to go into the hospital on Monday and get that biopsy.  That will be the real indicator.  I was at the hospital for the pre-surgery registration today and everything is so serious.  They take special care to deal with the fact that most people do not want surger

Charleston

So this trip was born about a week before we left when Angela mentioned that she had been thinking about going to Tampa to visit some of our friends and old neighbors there.  That seemed reasonable, but then we got talking about where else we could go and thought of Charleston.  She talked to a few of our friends there, and before we knew it, the Francis Marion Hotel had graciously and generously offered us a free room for Sunday and Monday.  We have done a few deals with the hotel but have never been there personally and I was very humbled that they were kind enough to understand how we could use some quality family time and help us out.

So our trip started for real on Sunday morning when we packed up the car and started driving.  I checked the route the night before on the Cracker Barrel trip routing tool to find out how quickly we could take a break and have breakfast.  Most people who know me, know that I love nearly all food and love to eat.  I also really like good food.  I have had the good fortune of dining on some of the most delicious and perfectly crafted foods anywhere, and Cracker Barrel pancakes still remain in my top five list of favorite dishes.  And unlike most of the other items on that dish that can only be had in one location in the world, I can get Cracker Barrel pancakes at interstate exits all over North America.  So, we stopped in Conyers, GA and had our breakfast.  The rest of the drive was pretty uneventful.  Dominic slept a little, I read a book, Angela drove, and we all took turns talking on and off. 

We arrived in Charleston at around 3PM and immediately dumped our car in the parking garage at the hotel and picked up the tickets the concierge left us for the Home and Garden Tour.  The tour started around 147 King Street, and our hotel was at 387 King Street.   We thought, “Great, two blocks…sunny afternoon, let’s walk.”  If you ever go to Charleston you might learn that the blocks are numbered roughly by the second digit of the street number.   We crossed about 12 streets between 387 and 147.  Surprise.  All in all, it was only about a 1 mile walk to the start of the tour, which should not have been a problem, but we did it at a pretty fast clip. 

The tour was interesting, but a little slow moving for Dominic’s taste.  He liked the gardens and heavily sculpted yards at some of these mansions, but could have cared less about listening to the docents in each house carefully explain where each piece of antique furniture came from, how old the rugs are and the backgrounds of the artists who had been commissioned to make paintings and sculptures.  And, we only had about an hour to tour all the homes before the event ended, so we wound up zipping through several houses rather quickly. 

The tour sort of ended at White Point Gardens, a park at the end of the peninsula that is just packed with the huge drooping branches of the live oak trees that are all over the coastal southeast area.  I love these trees, but they do look a little spooky.  Speaking of spooky, I think Charleston would be the ideal place to go trick-or-treating.  The combination of huge, moss draped, gnarly old trees mixed with the narrow sometimes cobble stoned streets, lots of irregular shaped lots, frequency of real gas burning lamps on the sides of the buildings and houses, little picket fences, history of hauntings, ghosts, pirates, hangings and rowdy sailors and the old horse drawn carriages always circulating would just make this place spooky in the dark.

Keeping up our march, we headed back north up the East Bay Street along Rainbow Row, a stretch of row homes along the wharf side of the city, all painted a different color.  We were getting hungry and stopped into a place on East Bay for a dinner of steamed oysters, fish tacos, and a lobster roll.  That was some delicious stuff and I wish I could remember the name of the restaurant.  By the time dinner ended, it was dark out so we headed straight to the hotel. 

This is all I’ve got for tonight.  I will pick up with the rest of the trip report tomorrow.

Get Comfortable

I’ve got a lot to say tonight, so go fill up your coffee cup or something and get comfortable.  The reason so many things have built up and now need to be blurted out in one big message is that my computer quit on me.  One morning last week I turned it on and all I could get was the blue error screen, better known as the blue screen of death.  I could not even boot the computer into safe mode.  I have tried several remedies and nothing is working.  I don’t have any money to take it to a local computer tech, so I keep trying to research options I can attempt myself.  I did get a kind offer from a friend who told me I can mail him the hard drive and he could at least try to recover the files stored in there.  I will probably try removing the drive tomorrow so I can send it off to him.  For now, I am using my old desktop computer.  It feels very restricting to have to work in one place on a desktop.  I have become very comfortable with the freedom of a laptop, and it has been cold the past few days, so going into the chilly basement to sit here alone and type has not been an appealing idea.   Anyway, that is why I have not posted in a few days. 

I wish I had posted about a dream I had last week.  I rarely have dreams when I sleep, at least none that I remember the next day, but either Wednesday or Thursday night of last week I had a very vivid dream that we went to see the doctor on the coming Monday (today) and she told us that the biopsy was inconclusive and they would have to do the procedure again.  That is the exact dream I had…short, simple and to the point.

Today, we were called by the doctors assistant around 10:00 AM and she said the doctor was ready to go over the biopsy results and we should come into the hospital right then, as soon as we could get there.  So we scrambled Dominic into his shoes and jacket and were out the door.  We drove the 40 minutes to the hospital, navigated the giant parking structure, and went to the lab first so they could draw blood for a test (we were instructed to do this before checking in to speak with the doctor).  Then we waited an hour for the doctor to be ready and she finally walked in and although she did not use the word “inconclusive” which was very clearly in my dream, she did tell us that the sample they got from the biopsy was non-diagnostic and they could draw no conclusions from it.  Her recommendation…do another biopsy!  Holy crap! 

I don’t know what was more shocking to me, the fact that treatment of my cancer has been at a go-nowhere standstill for almost two full months, and will now remain that way past the two month mark, or that I accurately dreamed of this exact scenario a few days before.  So, now the plan is to perform a mediastinoscopy, which she described as a more invasive procedure, but one that will take a larger portion of the tumor (which I have recently learned is actually a very enlarged lymph node) and definitely provide them with a diagnostic sample.   If you want to know how a mediastinoscopy is performed, click here.   As of today, the appointment for that procedure has not been determined, but I am hoping it will be this week.  I really want to get this thing moving. 

I have had a lot of up and down emotions about all of this over the past two weeks.  The biggest part is that I continue to have a feeling that I have lost control of my entire life and this fact or perception has been causing me a lot of stress.  I have written about my financial worries, and I don’t want to go down that road again tonight.  But another troublesome thing is that I am very frustrated with the abrupt start and stop way that the process has been unfolding and the lack of any predictability.  It started with my first appointment in Michigan on September 10 when I thought I was going to get radiation to the tumor.   That is what the appointment was for, and the doctor was so sure that we would follow that treatment plan that they got me completely prepped for radiation and calibrated their machine to my body…and then somebody, or some group suggested we consider an alternative.  So we revved up, got ready for radiation and then stopped.  The alternative approach made sense, so we sought out the best doctors available in Georgia to do it and they agreed with the assessment so we hurried to Emory and went right in expecting to have something done, and then they wanted to pause to do this biopsy.  Okay, another slam on the brakes before treating the disease, but again, it made sense.  So now a week has passed since the biopsy and we were so ready to find out who or what the real enemy is and how it needs to be fought, but again, the brakes have to be applied as we go for another biopsy.  And I don’t disagree with any of the theory behind why these things are happening.  At each stage, we seem to be encountering smart doctors who are taking an ever broadening look at the whole spectrum of the disease and developing a more and more comprehensive plan to fight.  I just wish that we could somehow know what kind of life to expect more than two or three days in advance.  When I arrived in Atlanta on October 2, I was mentally bracing to be entering the hospital for a week of body wracking chemotherapy within just a few days.  And with the lack of information on when to expect certain things, I have been living for three weeks with the feeling that I could be called into the hospital for that long treatment literally any day.  So, I am not planning to be anywhere, or making commitments to do anything, or attempting any work projects because they have kept me thinking that I am two or three days away from being attached to an IV drip.  But here I am three weeks later, with little to show for all this time, and still not knowing what to expect.  And it does not just affect me.  Angela has to live this way, and my parents who are all in to help out and support us are stuck dealing with these unknowns.  I feel terrible asking them to be away from their home and their life for these days where I wake up and live that 24 hours as a normal person.  All of last week, we kept wondering if it would be safe to make any plans for the weekend.  It’s a beautiful time of year to be outside and enjoying the fall weather, but I don’t want to get my hopes up with visions of playing outside with Dominic, to just get called into the hospital.  And now I have to go through it all again this week. 

I have more I want to write about but most of it is just more venting and anger and frustration.  And that is no fun.

We did do something important today that was actually very enjoyable.  Angela suggested that we get a family photo done before my chemo starts so that we can preserve a nice image of us all together before I start to look like a sick ravaged person.  But again, we have no money for things like that so she posted a request and told our story on a website called www.wishuponahero.com and a local photographer here in Roswell offered to be her hero by donating his time and work to do our family photo.  His name is Paul Wendl and his website is www.paulwendl.com.   He is a very experienced photography and runs his studio from his home.  The unique thing about his studio at home is that he has spent years heavily landscaping his backyard into a series of pathways, arches, flowing rivers, waterfalls, koi ponds, benches and all kinds of other visual props that not only make his yard look great, but gives him a lot of options for beautiful outdoor photos and that is exactly what we did today.  Dominic was looking super handsome as usual and his Mommy had her prettiest smile on, so I am very anxious to see these pictures.  Thank you very much Paul.

Well, that is it for tonight.  I am going back to my laptop to try one more fix.  If anyone out there has an idea how I can get it back from a state where it does not even boot into safe mode Windows, I would love to hear it.