Round 1 of Chemo Recap

I am long overdue to tell the stories of my first Chemo round effects and recovery session. I know this has been a long time coming, but somehow time just seems to fly. I figured I had better get this out to you before I start the second round, it may answer many of the questions you may have.
The first few days were not so bad effects wise. I was able to work in the mornings and then go to the Chemo treatments in the afternoon. By the end of Wednesday it was starting to get a little difficult. Thursday I was too beat to go in to the office, and had to actually break out the wheelchair and suffer the humiliation of having Cindy wheel me down the street and through the building, that was a bad day pride wise and emotionally. You really get treated differently while in the chair.
We had the last treatment on Friday the 8th of June. And that day I was strong enough to walk it rather than use the chair, might have been the anxiety of not wanting to be in the chair that gave me the strength to walk it. Then the little things like standing at the counter to get checked in become a monumental task. I completely slump on those counters and have to put my head down sometimes.
It was confusing for the poor girls behind the desk too. They said “hey weren’t you in a chair yesterday?” “Yep that’s me”, I replied “I just have more energy today” as I wheezed in and out and laid on their counter practically sprawled out.
Don’t you know it that is when the computer always wants to crap out too? “Sorry it is taking so long to check you in; the system has been running slow today”. Well of course it has. If I was there in a limo, being fed peeled grapes by supermodels, sipping a virgin pina colada, the computer would have been in over clock high speed mode.
“Mr. Hill can you verify your address for us, how about your insurance carrier, how about your primary care physician, how about your home phone, secondary phone, and emergency contact?”
How about you get me to a checked in and sitting down before I puke on your pretty LCD monitor. Hmmm, how about that? I have been going there for 4 years and if anything changes they will be the first to know.
Anyway that brings us to the end of the first round of treatments.
Saturday started the recovery phase for me. I felt worse Saturday than Friday, worse Sunday than Saturday, worse Monday than Sunday, Tuesday was about equal to Monday, so I bottomed out Monday and Tuesday. Then Wednesday was a little better, Thursday better still and Friday better still.
Cindy had to go out of town on Sunday for 7 days right at the beginning of the recovery week. So we had some nursing volunteers come to stay with me during the week.
My sister Tondi took the first few days and my Mom and step dad Gene took the last few days. Huge thanks to the 3 of them as I could have never made it without them.
Better run now, but will be back with more details on the recovery week and adventures with my volunteers.
I would not want to put you to sleep with any more to read today.

The Wind In My Hair,Or, My Hair In The Wind

Well I do not know why it took 28 days to happen, but the hair is coming out rapidly now. If I rub my hand across my head I come away with about 30 hairs right from the roots. This started Tuesday evening. I was holding the mail in my hands and stopped to talk to Cindy for a second. I was absent mindedly rubbing my head, for a few seconds. When I looked back down at the white envelopes, they were covered in about 1/4 length hairs. Wow, what a surprise. I had no real noticeable problem with this until then. Now it is accelerating. I can pinch about 15 hairs out at a time, and there is no resistance, it just comes right out.
I should be completely bald by Monday. It is a very strange sensation. Each day in the mirror I can see it getting thinner and thinner.
I think I might just go ahead and shave it after work Friday. Lets see if I can squeeze out one more day of having at least some hair. If I just let it go, I think it will look worse. It is starting to get patchy now.
Monday starts the second round of Chemo, so I am living in my best days right now for awhile. Lets keep our fingers crossed.

New Features

I have a couple of new features added to the blog.

First, I found a piece of software that lets you add a counter to your blog site. So now I can get some kind of idea how many times the blog is read in a nice little report and see it by day or weekly. You may notice the counter in the right hand margin under the links. I put it up June 24th Sunday at about 5 AM so the number you see there is the number of times the page has been loaded since then. This is not the count of individual visitors as I would have liked, but rather page loads, if you go off the page and come back then I think that is treated as a tick on the counter. Anyway it is better information than I had before.

Next, people are always asking me what they can do to help. Some want to help with errands and chores, others have asked if they can give money to help with medical bills and expenses. There is just no way that I could accept money from friends or relatives, I would have to be at the starvation level for that to even cross my mind. And given the research I have done on so called non-profit organizations and how much money is actually received by the intended parties, I cannot encourage donations to them either.
After much consideration and deliberation I have added a small sponsor block at the top of the page. This is a way you can help financially without actually parting with any money, which is the only way, I would have it. The payouts on these are miniscule, but if I have enough people actually loading the pages, then after a month it may offset the cost of one of my prescription co pays or something.
I have tried to pick a color scheme that will just blend in so they are not distracting. So if you don’t want to waste your time with them you can just breeze right by them. I would never want to burden anyone who takes the time to come to my site, and officially I cannot encourage you to visit the sponsor links, per the contract terms. So I am not asking you to visit them, I am just letting you know they are there, in case you missed them.
I do not get to control what shows up there, but it is supposed to be content related. Like today I saw some for cancer clinical trials and one for digestive disorders. So I might learn some things from these as well, who would have thought. Pretty cool how that works, huh.

Darn after 2 AM already, got to make like a banana and split.
More updates to come soon!
I have not even gotten into the recovery story yet, so much to do, so little time.
Counting down to Chemo round 2 starting Monday July 2nd.

All things according to his will.
Greg

Overdue Thanks

Hey crew,

First let me let you long time readers in on some news. I have recently been approached by several new people that have mentioned they have been reading the blog. Well welcome aboard to all you new comers. I have no idea how many people are reading it, as there is no counter statistics with the free blog service I am using. But obviously it is more than I imagined. Some people have just found it on their own, others have been directed or referred by other readers. Anyway I welcome anybody interested enough in me and my progress to come along for the ride. I will try not to dampen my emotions given the larger audience. You might read things here that you would never hear me say to you, but hey I got to be me. Consider this your view into my personal diary.

Now let me correct some things from the last post…

-I have to wait until the fall to stain the deck as they changed the formula on the treated wood this year. Um, working on that was a pipe dream anyway as you will see in the coming posts about the “recovery vacation week”.

-Jeff was not able to come with Tondi (my sister, and do not ask me where the name came from) as he runs his own construction company and had to meet with the building inspectors 3 days in a row, which makes her coming all the more heroic.

-Cindy went to a Cisco boot camp; many of you might not be familiar with this and could have even read it as a Crisco boot camp. The non technical readers totally did not understand what this was. She was learning about the guts of high tech phone routing for her job, not taking a cooking class for a week.

-I have been told by many honest sources that the haircut picture in the last post was not my most photogenic performance. And I will have to say looking back at it (as of course all of you are now to see how ugly I am) it is pretty bad. Hey I already felt like 10 lbs of shit stuffed into a 5 lb bag that day, and then I just had the joy of shaving my head for Chemo. It was not a shining moment. So I will make the unprecedented move of editing a previous post and change the picture sometime later. So if you are reading this after the change has been made, sorry you missed what the entire ruckus was about.

Next I have to get some huge thanks out to various folks for cool stuff they have done for me that I might not have fit in here before.

My sisters, Tammy, Michelle, and my mom worked on a fantastic quilt for me since I dress like an Eskimo all the time and live wrapped in a blanket at home year around. The quilt has pictures photos all over it from events and time periods in my life, along with family and friends. Around the perimeter are quilted squares with memorable sayings, funny events, and family member names. It is truly a fabulous collection of memorabilia, and quite warm and comfy. I think the intention was to wrap up in this and get a hug from all your favorite things simultaneously. It is so cool and took a tremendous amount of work.

We have had the lawn done a few times now thanks to the folks at Blackbaud. The crew they hired has done a great job, they edge the driveway and planters, and weed whack along the fence each time. The lawn looks great!! They even left us some tomatoes from their garden after the last visit.

Also we got the house cleaning done by the professional maid service, once again thanks to our Blackbaud friends, and the house is cleaner now than the day we moved in. They even got the 16 foot ladder out of the garage and used it to clean the windows 20 feet in the air in our 2 story living room. Way beyond the call of duty. They did a fantastic job. I know we will be using them again.

Back in February there was a very nice surprise for me. A beautiful cherry wood box was delivered to my office and inside were well over 100 cards and letters from friends relatives and well wishers. This was a surprise project that I know many of you participated in. It was great to get it and very emotional to read the contents. I could only read a few each day and then I turned into a blubbering idiot. So it took a while to get through them all. The majority of them were given to me without return addresses, just the card and envelope, but not the original envelope where it was mailed to for assembly. So I did not have many addresses to respond to. That left me in the quandary of how to or if I should respond. Some people would get response and others wouldn’t. If anybody compared notes it might seem as though I snubbed someone on purpose. So I did the easy thing and treated everybody equal. Hell, I don’t know how to say thank you for all that mushy stuff anyway. So it was left kind of hanging out there. I want to take this opportunity to thank all that participated in that project and to let you know it was overwhelming. The emotional support that I have received and continue to receive is miraculous. It could not have come at a better time. It was a home run!!! The case and contents are on display in my living room.

Thanks again.

My sister Tammy pretty much remodeled the top floor of her house to accommodate me during my visits to Duke Medical Center. I am not kidding. She moved out of one bedroom, got rid of all the furniture and fixtures from the room she was moving into. Changed all the furniture around. Remodeled a third room into a closet and is destroying and redoing a bathroom that will finish off her new master suite. This craziness was done much in part to provide me with a comfortable base of operations to attack the Duke campus. I thought she was just doing it because she is a crazy home project do it your selfer, and it was just coincidental I was going to benefit by not sleeping on the couch but be able to take her old room. Later I found out that it was done because of my predicament of being away from home and her trying to make me as comfortable as possible. So my eternal thanks to her and Randy for going through all that to help me out. I really wish you had not, but I know that wild horses could not have stopped you from doing it. I love you both so much. Thanks for opening your home to Cindy and I. Sorry we can’t take more advantage of it (thanks to those bastards at Novartis who killed my study drug), but while we were there it was great. You can bet we will be back for more Popsicles and hot chocolate (my cravings go to extremes of hot and cold too). I tried to get a picture with Tammy and me and all her animals that we love to play with while there, but for some reason try as hard as we may, we could not get the 3 dogs 3 cats 2 birds and 7 fish to hold still for the camera. We had fun trying to get them together though. This is the best picture we came up with after all those attempted round ups.

More thanks to come to others as the story progresses. I have taken enough of your time for now. (Plus it is 4:57 am, better try to take a nap, Cindy is going to kill me, I think I will have biscuits and gravy for breakfast in an hour, mmm yummy delusional insomnia cravings)

All things according to his will.
Ta ta for now,
Greg

Chemo Treatments

The medicines they are giving me during the infusions are numerous, and I won’t list them out to save you the boredom. But I go through about 6 bags of drip stuff. Only 2 of them are the actual Chemo medicine. The rest are nausea stuff and sugar water. It takes about 2.5 hours to get it all down.

You get put in a kind of big open room with about 7 other people, but you are separated by these little glass sliding dividers from your left and right neighbors, but you do see across to the opposite line of people staring back at you. So it is kind of private, but not really. There is a nice comfy reclining chair to sit in during the infusion and a decent sized guest chair for a visitor.
So far Cindy has come with me for all the infusions.
We have a treatment cycle of 5 days on and 3 weeks off. So far I have not actually had to throw up. I have felt like it many times, and my stomach is starting to feel like the inside of it is covered with fire ant bites. I guess the cells in the stomach lining are dying off as expected. I am expected to experience the worst of the effects this weekend, when I reach maximum saturation.

As you can see from the picture I have preempted the hair falling out routine and went with the buzz cut. I have seen some patches thinning considerably already. I did this to avoid the shock of finding clumps of hair laying around and freaking me out. Also to deal with the hair thing emotionally all at one time was a better move I think.
I made it fun at least while I was cutting it. I first made my self a big Mohawk, then came back and cut that off.
The nurse that is taking care of my infusions is named Cheryl and seems to be real nice. She has been doing this for 31 years. There are DVD’s here they let you borrow if you have a DVD player. I bring my laptop each day and do work or play games, but I guess I will eventually watch some of their DVD’s on it. It is a nice little feature, it is all funded by donation, and the hospital does not pay for it. We get them for free, but people donate the DVD’s and the staff can check them out for $1 over the weekends and they use that money to buy new ones.
Over all it has been an uneventful first week, fatigue has been the biggest complaint. Today Cindy forced me to break out the wheelchair to go from the car to the hospital. She had fun pushing me. It was quite a moral setback for me to have to succumb to riding in it, but I guess it had to happen sooner or later. There are no shocks on it. I was just thinking if you have hemorrhoids and have to ride in one of these, you better get one of those air donut things.
So what terrors lie ahead for the weekend, who knows, it could be light. I have scheduled to be on vacation all next week given the unknown and I have Tondi coming to baby sit Sunday thru Tuesday and Mom coming Wednesday thru Saturday. Cindy will be in Colorado all week at a Cisco Training Bootcamp.
Maybe I will feel good enough to spend some time actually staining the deck on my vacation. Jeff and Gene will be coming with their associated wives and would probably love an activity to break up their boring days sitting with me.
Well, that is enough rambling for now.
Hope this give you an idea of the Chemo infusion process.
Love to all,
Greg

My New Wheels

Tammy and Randy, my sister and brother in-law came through with a great wheel chair for me. It belonged to Randy’s mother Ruth who passed a couple years ago and was someone I greatly admired. I spent several summer days at her lake house sipping iced tea and playing in the surf. She was always patient and kind to a little brat like me. And I am honored to be able to ride in her chair.
Anyway it is great and comfortable; I have not had to actually use it yet in action. But it is in the trunk of the car and ready for deployment when needed. Which I hope is never, but I fear is soon. Cindy has threatened to make me use it tomorrow for chemo treatment as I got winded and worn out walking to the building today (Wednesday).
I have test driven it in the house and took a chunk out of the drywall in the first 60 seconds, so got a little work to do there.
Bumper sticker submissions have been coming in, but I am still looking for more.
I will post the leaders for your viewing enjoyment soon.

Notice to all of you who submit postings to the blog. I do get your messages and can not thank you enough for your notes of encouragement and hope. Sometimes I get postings from people I have not heard from in years and it is such a joy to know they are concerned with my situation, I love you all!!!
I wish there was a way to see how many people actually see the postings, if there is I have not found it yet. I will get up the energy to look one day at the settings. I might really not want to know as it may affect the content I put up here. So far I have been pretty honest and no holds barred, but if I see big distribution it becomes embarrassing to talk about some of the things I include you, my faithful readers, in on. But hey like I have said for a while now, when your mother in-law has seen your twig and giggle berries in a hospital bed up those stupid skirts all shame is gone! I base the rest of my humility on that event: Is this worse than Ellen seeing my meat and two veg? No, then go for it.

One downfall of the posting it that if you do not register on the blog and just leave a quick message as anonymous I do not have anyway of writing you back or contacting you to say thanks or catch up. That is fine to leave the message an anonymous, but if you would like to add your email address in the body of your message I could be able to write you back. I completely understand if you do not want to give it out publicly since the messages left can be viewed by all. And I cannot promise that I will write back either. Depending on how all the impacts of life are treating me on a particular day. I have really been neglecting work lately, and have to find a way to get more involved with that.

Well that’s all for now. I will give a longer Chemo update another day.
Love from the glow in the dark Chemo Kid, Greg.