FEBRUARY
End of February I have what I believe is the Flu. Check my throat to see why it’s sore. It’s sore on the left side but I notice a nodule on the right side.
Go to my Family Doctor. He doesn’t like the way the nodule looks. Quickly sets up an appointment with an ENT for the 5th of March.
March 5th
Visit ENT and he doesn’t believe that there is anything to the nodule but I need to have it surgically removed.
April
2nd
Have surgery at Creestwood Medical Center in Huntsville. Surgery goes as planned and nodule is sent to pathology.
3rd
Get a call from ENT informing me that things are not OK, it’s cancer. But he believes that he got it all. Unfortunately this type of cancer may have come from another place in my body and manifested itself as a nodule in my throat. ENT sets up appointment with a Oncology doctor and schedules blood work to be done
the next day.
4th
Go to Lab for blood work.
9th
Morning
Go to appointment with my family doctor for my annual physical that had been planned for over 6 months. Men, you know what this one is about!
Afternoon
Go to see my Oncologist. Tells me that the nodule was actually a tumor and I need to have 4 tests. Those tests included – blood work, bone scan, PET scan and a bone marrow biopsy. I told him the blood work was complete and he came back and told me the blood work looked fine. I decided to have the bone marrow biopsy done that day.
Bone Marrow Biopsy
This is a procedure that is done in the office while you’re awake! They take what my wife said looked similar to a meat thermometer and basically twist it into your bone in the hip area and then extract bone plasma. After that they actually take a small piece of bone! Did i mention that this is all done with a local anesthetic? OUCH!
Late Afternoon
Meet once again with my ENT to discuss what’s about to happen.
This was a very emotional and intense day for me.
May
1st
Bone Scan
Basically a bunch of X-rays, no big deal.
PET Scan
This one was a little more interesting. When they asked me if I was claustrophobic I should have known something was up!
It begins with a nurse bringing in the material that would be put in my IV, in what looked like a steel toolbox – realize now that was because it was radioactive. The material is run through my IV and I sit for about 45 minutes.
Then I go for the actual scan. I lay down on a table, the tech then places a Velcro blanket around me so I can’t move my upper body then send me into the small tube. I now understand the claustrophobic concern as she says Mr. Johnson you may want to close your eyes! I survive this one with a lot of prayer!
All tests come back in my favor!
Tumor Board
A few days later my Oncologist calls and tells me that he presented my case to the Tumor Board. This is a board of doctors that discuss cancer treatments that are best suited for each case. He informs me that they believe that the best way to treat any potential residual cancer cells left from the original surgery will be Radiation Treatments.
6th
Meet with my Radiology Oncologist who explains what I need to go through. Tells me that they believe that this is a preventative measure to be sure all cancer cells are gone.
He informs me:
I’ll have a loss of taste for maybe up to 2 years. Some should come back within 9 months after treatments end. I will likely lose some of my salivary process. (this keeps your teeth healthy as well as making it easy to swallow)
I’ll need a deep cleaning at my Dentist because there is a slight chance that my back teeth won’t fare well if I don’t take care of them due to the lack of saliva.
I’ll develop a very sore throat.
Exercising will help the overall process.
Due to lack of taste I’ll need to be sure to keep my body weight up.
I’ll be fitted with a thermoplastic mask to keep my head in perfect position for radiation treatments.
You will get a little tired after each radiation treatment and a power nap here and there will help.
14th
Simulation
Today I got fitted with my mask. I hated this experience! You lay down on a table. They take this flat sheet of mesh thermoplastic and place it on your face. As it dries it begins to vacuum fit you face from your upper bicep over your head. It is very tight! Then they screw your mask to the table. It’s so tight that I feel like I can’t swallow! My teeth are clinched together very tightly as well. No fun on this day.
June
1st
Treatments Begin!
Typical treatment day…
3:30 PM
Take nausea medication and leave house after drinking a ton of water all day. medication is to help with any nausea from a shot that I have to take EVERY DAY to help salvage my saliva process.
4:00 PM
Arrive at Clearview Cancer Institute. Get weighed and have blood pressure taken. Proceed to Chemotherapy room for my shot (not chemotherapy, only administered in that room). Because I will have so many shots, I have a choice to take then in my thigh, tricep or abdomen. Once I get my shot, I have to stay there for a minimum of 15 minutes to be sure I don’t have a reaction and to be sure my blood pressure doesn’t drop drastically low.
4:30 PM Go downstairs to the Radiology office and check in for my 5:00 treatment.
5:00 PM Go into the radiation room, lay down on the table and have the MASK placed on my shoulders and face and have it snapped to the table. Tech then makes sure all lasers are aligned and then leaves the room. The radio is playing. If I panic (which I did once during a trial run) all I have to do is raise my hand. It takes thee tech roughly 10 seconds to unlock the mechanical vault door to get to me to unsnap the mask. The treatments last about 10 minutes but in that mask seems like an eternity. I spend that time saying the Lord’s Prayer, the Apostle’s Creed and praying for the church and our members at The Harbour and Genesis. There is no feeling like hearing the vault door open and hearing the radiation tech say it all done. Then the snaps are unsnapped and I’m good to go.
I will have 28 of these treatments I believe before it’s all over.
Thus far, by the grace of God, it has not slowed me down really as far as the church is concerned or life overall. I still have about the same type day as before all this happened. I have been feeling a bit nauseous from the sot but I’m going to try something today to help that. I have also lost some taste and feel tired every now and then. But I have set the time so that I can get everything done at church and for my family then I have the evenings to be a slacker if I need to!
All my doctors have been great throughout all this! Natalie and Brett the Radiation Techs (place me in my mask) have been the best at understanding that I really don’t care for this contraption!My daughter also sits with them as my treatment is taking place as she has to drive me to and from these treatments, and they tell her everything that they are doing.
My family, friends, churches, my DS, my Bishop, and accountability partner, have been very supportive throughout this process and to that I thank Christ for such great support.
Stay tuned as I update this blog on a regular basis.
June 13
Had my 9th treatment today! For those keeping score, you’re wondering why it wasn’t number 10 since I’ve been at it for 2 weeks! Well I’ve been informed by other patients that the radiation machine occasionally breaks something which has to be repaired. Unfortunately that happened this week and adds a day to my completion date. Booooo!
Today was the hardest day with my eating situation. I did eat what I wanted, but every bite was a struggle. Food just seems repulsive to me now. My favorite meal currently is a protein shake with: honey, 2 packs of strawberries and cream oatmeal, and 3 scrambled eggs, all mixed in the blender – yes, even the cooked eggs, I really do like it. The texture of foods is really whacked to me now, it’s just repulsive! I need to keep my weight up each week and so far I’ve accomplished that goal. Many people choose to have a feeding tube while having head and neck radiation. Maybe that tells you how bad the taste of food can become. It also tells you how bad the lack of taste becomes – it’s just hard to describe if you’ve never experienced it.
Even with all this stuff this week, especially today, I’m doing really well.
The highlight today may have been in the Chemo room (I don’t take chemo treatments, it’s just where the nurses give me my shot every day before radiation) with a first timer. I could tell she was very apprehensive, who wouldn’t be. So I did my best to let her know that she could do it. I explained how I had the mask thingy and if I could do that she could get through it too. She thanked me several times before it was time for me to go. God has used ME in the wildest places!
Until next time – don’t have another treatment until Monday! Hooray for today!
June 20th
Well, today is the halfway point! Thought I would be more excited than I am about this milestone but being a pessimist I realize that I have just as far to go as I’ve been! Oh well, one more day closer nonetheless!
My eating situation is still beyond explanation unless you have been through this. I now get up every day desperately dreading each meal or lack thereof. It’s still all liquids and they are very difficult to swallow (not due to a sore throat or anything, it’s just repulsive). I know I must supply my body with the nutrients but it’s a struggle with every bite or swallow. This week I even tried putting creamed corn and chicken chili in the blender to get some regular food in me. I drank it, but not again!
This will sound grosser than it really is, but I have now been told I have the start of a yeast infection in my MOUTH. This is very common with head and neck radiation patients and somewhat expected. I have medication to take care of it!
I have now started to really dread the smell of the Chemo room where I get my Ethyol shot every day before my radiation treatment. Hard to explain but smells can drive me crazy now.
I think I’m going to start a “Desired Food” list for when this is all over, and it will end and I know that! Currently a few Big Macs and large fries are at the top of the list. This is odd since I haven’t had one in probably 2 years (I eat mostly chicken). Then a chicken burrito from Rossie’s Cantina and then BBQ from Jim and Nicks in Birmingham (or Destin – all food tastes better in Destin). I think I’ll order the pulled pork plate with mashed potatoes and mac and cheese – yum! After sharing this food list with my accountability partner in the ministry, he called and told me he was at McDonald’s eating a Big Mac and fries in my honor!
Please pray that eating (Drinking) will become easier and I quit dreading every meal. I do not want a feeding tube! But, if I can do all I can to make it to my last treatment then each day we’re a day closer to my taste coming back. That’s the disappointing part, even when the daily radiation treatments are over, it will still be a long time before my taste comes back.
Overall, I’m still doing great even in the midst of all this. The Mask Time (when I’m snapped to the table for the treatments) has become much easier (answered prayer) and that’s now when I pray for stuff and also thank God for all the great stuff that is happening at the churches I serve(sometimes we forget that God is still doing cool stuff even in the midst of stuff like this!) So my hopes are high as I write this with 14 treatments under my belt and only 14 left to go!
Until next time...
June 22
Today started out as an interesting day. I woke up and noticed hair on what I thought was my pillow (could have been my wife’s as they look the same). But then I remembered that my wife had a hair cut the day before and wrote it off as that.
But after getting out of the shower I noticed a lot of hair in the tub – gross I know but… Then I got the mirror to look for the obvious – I am losing hair in a couple of patches on my head. This is a side effect of radiation. Unlike Chemo, where you may lose large amounts of hair, radiation causes small patches to go missing! I believe it might be related to the direction of the radiation beam going through your body. I just pray that I don’t end up looking like someone threw an angry cat on my head!
I am now asking everyone to officially refer to me as Patch Johnson! Oh well, whatcha gonna do?
I start down the other side of the mountain tomorrow and when the day is finished I have less treatments to go than when I started (today I sit at the halfway point with 14 treatments left).
I realized today that I might actually have more than 3 weeks left – boo, a mental thing! Why? The odds are the Cancer Institute will be closed on July 4th and there is always the possibility of the machine being down again at some point for maintenance.
Anyway, that’s all for now. All is well and my spirits are high leading into Monday, even if my new name is Patch! 🙂
June 26 – 27
These two days have been the most difficult. For whatever reason I have not been feeling well after my Ethyol shots every evening.
It’s impossible to eat. Just bought a product from GNC that gives me 1000 calories per glass! My dietitian is interested in me keeping my calories as high as possible each day. This should help me keep my weight as close as possible to normal. I’m losing very little weight at this point so it shouldn’t be a problem.
Each day is still a struggle with the blender foods. My meals exist pretty much of Ensure, milk shakes with peanut butter, oatmeal, ice cream, and honey.
Taste issues. I’m not sure how anyone can prepare you for the taste issues you encounter with head and neck radiation. It’s hard to even explain except with others that have gone through this. While I still can only really taste traces of chocolate, the taste is distorted – not good distortion! So I always feel hungry and there is no way to stop it with liquids. Even when I have a shake, I dread it from the preparation phase, to the time that I actually swallow it. Keep in mind it only takes about 20 seconds to swallow it but it’s so repulsive, the taste and texture in your mouth. I then quickly rinse my mouth with water to clear the taste before I gag.
A few days ago I did get to talk about my taste issues with another head and neck radiation patient. His family had ordered a pizza and a calzone. He tried to eat just one bite of the calzone (his favorite) and said he just couldn’t do it. His wife, sitting by his side said, I can’t understand why you can’t just swallow. I looked at him and said I do!
On Monday I will be on treatment 20 of 28! I thought I would feel better about it at this point, I mean it would appear the end is in sight. But 9 more treatments are a full 2 weeks considering the 4th of July (Cancer Center is closed). In my mind that means about 42 plus shakes to keep my weight up. On top of that, it will take time for me to get my taste back and the right feeling in my mouth with food texture etc… So, in my mind I’ve still got a looooong ways to go!
At the present, I don’t really focus much on the long term. Take one day at a time has never meant as much as it does now in my life. It’s really one meal at a time for me. Each meal I’m thankful to Christ that that one is behind me and we’re a little closer to getting back to a normal routine.
Once again, overall I’m doing really well! Praise God. My throat, while sore, isn’t as bad as some other patients that I see daily. I do not have any radiation burns yet on my neck. These are basically like a really bad sunburn. When they start, if they start, I at least will only have a couple of weeks of it. I pray that it never happens. One of my friends has it currently and is in dire straights. Can’t keep his shirt on it hurts so bad. I am still losing my hair though! But it really doesn’t look any worse then some bad haircuts I’ve had in the past. There may come a time when I have to trim my hair really close but I will wait until all other options are exhausted.
I continue to function about like normal. I’m able to get all my church related activities taken care of except for Hospital visitation. I have chosen not to take a chance of getting something while my immune defenses are working with the radiation. I do rest a good bit when I’m at home. I’m actually writing this on Saturday and I’m looking forward to Worship tomorrow. My churches have been very supportive throughout this entire process and for that I’m thankful. I really want to personally operate as close to 100% as possible throughout this process.
Ultimately I appreciate the support of my family. They have been wonderful throughout this entire process. My wife and I were discussing this journey this morning and both admitted that it seems like it’s been going on forever. My daughters have been very helpful and nurturing and my wife has been the BEST! I don’t know how I could have made it this far without her.
Before someone says what about Christ, you never mentioned Christ. To that I’d say don’t even go there with me. If you know anything about me and the way I live my life you already know that one’s a given! So for those that may not know me, know this, I could not endure this without Christ. Make no mistake.
Last but not least, and this is ironic… I find myself constantly watching the Food Network channel! My wife saw me watching it thee other day and asked why are you watching that? I told her that it’s no different than when I’m dreaming about big sailboats or motorcycles! In my mind, as I watch them create great looking and tasting food, I’m thinking, one day…
Until next time…
July 2
The last few days have been the toughest. I’m starting to be more nauseated during the day now. Yesterday after getting my Ethyol shot I started to feel like I was going to have the dry heaves and left the Chemo room where I take the shot. I went and stood in the hall. While there my cancer doctor walked up and asked how I was doing. After explaining what was going on and how long I had left, he said that these last days are the hardest, just hang in there.
After taking my radiation yesterday I saw my doctor. He said that I looked great. My throat looked really good and should heal quickly. We discussed various options related to the nausea.
On the way home I got really sick in the car. Got a bad case of the dry heaves once again and could not wait to get home. There really is no place like home! After arriving, I fell a sleep which is the usual post radiation thing for me at this stage of the game.
I need to say how great my family has been in the midst of all this. This has created a very different summer than any we’ve experienced. For my oldest daughter, home from college, we’ve not been able to do our usual fun summer stuff and she will be heading off to school again before we know it. That has been weighing in heavily on me lately. Then there’s my wife. All she currently sees of me are my sick parts of the day. She leaves early for work each day, mornings are when I feel the best, and then she returns in the late afternoon, which is my worst time of day. So for several weeks now all she has known is the side of me that hasn’t felt well. But, praise God, I do usually feel pretty good on weekends! My youngest daughter is probably the only one that gets to see the whole picture. My entire family has been through the ringer with me throughout this entire experience and I’m looking forward to a big celebration with them once this is over and my taste is back.
I also need to thank both of my churches for offering so much support throughout all this. They have been very clear about me taking care of myself. While I have yet to miss a day due to radiation or miss a Sunday, I do know if that day presents itself that it will all be fine. I did have to go home early yesterday due to a sinus infection! Go figure.
Today I’ll end by asking that you pray for my family first and me second. They have been through so much and it must be scary for your dad and husband to have been diagnosed with cancer and see him go through all this horrible stuff. But, this too shall pass!
Until next time…
July 3
The morning starts out as most mornings these days – not well! Just have a funny feeling in my stomach that I can’t seem to shake off.
But that’s not the highlight of my day. I get a call from the Cancer Center informing me that the radiation machine is not working properly and they are cancelling all appointments for today. You’re kidding me! That means instead of finishing next Friday, it will put me through another weekend, finishing on Monday – bummer! Well, they tell me if things change they will let me know. A quick prayer is now needed. It will be mentally devistating if I have to endure another weekend without being finished with this mess.
About 2:00 pm. I get a call that the machine has been repaired, could I still come today. I’ll be there in 20 minutes! Got it in and I’m still on schedule praying that all is well this upcoming week – will be finished on Friday.
July 4
Several days ago my oldest daughter gave me a book – Wide Awake by Erwin McManus. In it he writes about living out our dreams. Hold this thought…
As you have read in earlier posts I have lost a lot of hair on the back of my head. It’s now to the point that I feel funny being in public except at my churches and around people that I know. It really looks goofy.
So…
Today I decide to live out a dream that I’ve had for a long time – to have a bald head. I know it’s weird to hear this with someone that has a head full of hair but… I go to the internet to learn all the head shave tricks – YouTube is great! Pull out my clippers – I’ve been cutting my own hair for years, and start the process. First a number 4 guard, then a 3,2,1, then just the clippers. I felt this was the best plan of attack so if at any level I didn’t have the dome to strongly support the baldy, I could stop. At each level I thought it looked good so I took a razor and took it to the scalp. Of course those that rock the baldy know that it’s all about the shine! You’re nothing without the shine. So I took some moisturizer and lathered it up into a pretty decent shine for the first try! I must say that I love it and may never go back.
Until next time…
July 11
Yesterday I made sure that I could come in early for my radiation treatment. Why would one want to come early for such things? Because it was my last day!
Today was also a day that my wife could go with me!
Everything went well and I returned home as usual, sick at my stomach, so I took things easy for most of the day – great way to spend your day off!
I can’t begin to tell you how hungry I now feel multiple times each day. I feel like I’m in a race to get my taste back before I start losing more weight. I still weigh about 230, so it’s not like I’m going to blow away! But each evening I have to drink a shake before I go to bed or I’ll wake up with stomach pains that won’t go away until I feed the beast – and do they hurt!
July 14
Today is the first day in about 6 weeks that I will not have to go to the Cancer Center! Mentally I keep telling myself that I’m now healing as I write this. Within a few hours I will have gone longer then I ever have in 6 weeks without radiation! While I don’t feel any better physically, mentally it does make a difference.
I’m still hungry, don’t feel the best, stomach hurts but I don’t have to have any more treatments!
Yesterday was one of my toughest days. Before leading worship I thought I was going to hurl my shake! So, I went into my office for a while before and after morning prayer. I hated not being with everyone because that’s important to me, but…
I still have a few hurdles in front of me before I’m 100%. I still get tired. I still get very hungry and my stomach hurts every day. I still have no taste. I still have that velvet feel on the roof of my mouth. I still have sores in my mouth, etc.
While I have never snored in my life, my wife says that I snore like a train now. She has been so gracious by letting me sleep, knowing that’s one of the few times each day that I’m at peace.
In the midst of all this it has made me appreciate Worship even more. I have made a huge effort not to miss Worship over the last 10 years for anything except vacation. There is something sacred about taking scripture seriously when it comes to Worship. I just can’t see blowing off Worship for anything other than being sick or perhaps vacation. I praise God that I have been able to suck it up during this process to continue to Worship Him each and every Sunday.
I continue to feel the power of prayer from all those that have kept me in constant prayer. Prayer is a very powerful spiritual tool that is greatly appreciated!
Throughout this process I chose to pray for someone else when they bolted me to the table with my mask. This became a very focused time for me to pray for others that were in need. Because of my panic attack early in the process of the mask, I prayed the Lord’s Prayer and recited the Apostle’s Creed the first week of radiation. From that point forward I began to pray for others because I already knew there were already plenty of people praying for me, there was no need to be redundant when I could pray for others!
Until next time…
BTW, spell check still not working so give me a little grace…
July 17
OK, so I thought at this point I might be experiencing a little progress. And I do mean a little progress. I realize I have been undergoing radiation treatments for about 6 weeks and I won’t be back to 100% overnight! I got it.
But 2 days ago I started getting the king of all sore throats. I also have the biggest sore on the side of my tongue that you could ever imagine. Every time I talk it rubs against my teeth creating a lovely sensation in my mouth. My mouth is a mess!
Well I finally decided after my wife told me for the 20th time to call the doctor, to call the doctor – it’s a guy thing so relax. He prescribed something called “Magic Mouthwash”. If you search the web, many head and neck radiation patients swear by this stuff. I must admit that it’s weird but effective! It’s a thick liquid that you swish around in your mouth. It then numbs everything like being at the dentist.
One important note of interest… I’m not getting sick to my stomach as much as I was last week! That is a huge blessing.
Overall I’m doing well, all things considered. Would like to see more progress toward getting my taste back but oh well, I’ll have to be patient.
Soon I’ll be posting my food crave list, a list of food that I’ve been craving in the order that I hope to eat once again. Here’s a short list that’s subject to change in order:
Big Mac and Large Fry ( Odd, I haven’t had a Big Mac in about 2 years)
Rosie’s Chicken Nachos
Rosie’s Chicken Burrito
Firehouse Sub on a Club fully involved
PF Changs
Cashew Turtle at the Chocolate Shop at Bridge Street
Moe’s Home-wrecker with steak
Krystal (I know but when you haven’t tasted anything in a while a lot of stuff sounds good)
Donatos Pizza
Bucks Pizza
And when I get to eat these things I’ll enjoy every bite – literally! Grace before meals will take on a whloe new meaning!
Until next time!
July 30th
OK, it’s been a few days since I updated you on my condition. So here’s the skinny…
I am feeling much better!
I have started to eat soup for lunch and supper. I still lack taste but I am able to swallow them without gagging. Just to have something other than a liquid in my stomach is very soothing!
I have also started going back to the gym. They told me exercising was a good thing to do while undergoing radiation treatments. They said from the beginning to keep up a normal life. Yea, right! But now things are starting to feel like they used to – except for my taste. I no longer dread each meal from the time I finish the last one until the next. I’m not getting sick at my stomach anymore either.
So overall I’m slowly getting back to normal – as normal as I get anyway!
Until next time…
August 12th
Enough already! I know I haven’t posted in a few days.
Well some pretty cool thinks have happened since the last post…
First it appears that the Bald Head is a winner! I must now say that Bald Guys have more fun! My hair is still not growing back yet and I’m good with that. My radiation nurses told me that it may not. That’s cool too – whatcha gonna do anyway?
I’m feeling much better these days and trying to eat a little real food. Still mostly on shakes but I try new food weekly like a mad scientist. A bald mad scientist!
Last weekend we went to see Jeremy Camp in concert at Joe Davis stadium with some good friends. In the middle of the show I get this craving for Popcorn? My lovely wife offers to buy me some, which is good since she always has the money anyway. I end up eating the entire box by myself – just like a big boy! Granted it was like eating a handful of salt but I loved the taste. I told everyone seated around me that would listen. I’ve had a bag of popcorn everyday since. The Church now smells like a food stand at the fair! That’s the most I’ve eaten in 4 months at one time! Yea baby!
One day I also tried a bite of a hotdog, the first few chews actually tasted normal then went to nothing. But hey, it’s huge progress to me. I need to try to get real food into my system. It’s almost like trying to learn to eat again. Did I mention that I almost ate 2 eggs a few weeks ago? The last bite got blown on the cabinets in the kitchen as I choked – just could not swallow that last bite before – well, you know! OK, that one was a little graphic but I told you I would write what it’s really like to go through this! I did hold back without telling you they also splattered on the walls. Got it cleaned up before my wife saw it, or my last post might have ben my last post! Oh yeah, she will read this! I love you honey. My wife has been a real trooper as we have walked together through this.
Most accomplishments may not seem like much to others but they are huge to me. A few weeks ago even the thought of eating one bite of a hot dog was out of the question. An entire box of popcorn? No way! Picture Old Faithful! Maybe it would be better not to.
I still have a burned up tongue complete with a brown racing stripe but it’s getting better. I do have some taste at first 9first couple of chews) which then goes away with most foods, but it’s a start!
The toughest part currently is that I have one daughter back in school and another that will leave again for college this week. It only reminds me that I lost a summer with my family to radiation that I can’t get back. My wife, girls, parents, sister, in-laws, friends and my churches have been wonderful to me throughout this entire nightmare, and for that I am thankful. Why did I not mention Christ in that sentence? If you know me that’s a given! Without Christ I would have never gotten through this like I have.
BTW, I have since eaten a bowl of Chili and an entire hotdog. They still taste distorted but we’re getting closer than we were last week!
Until next time…
August 20
Got a phone call yesterday reminding me of my radiology appointment today. Funny, I didn’t recall an appointment. I quickly pulled out my stack of appointment cards and sure enough there it was.
Got there early and waited an hour.
Nurse calls my name. I step up on the scales and it reads 237, my weight is going back up, yeah baby!
The nurse then asks a thousand questions then tells me the proverbial “the Doctor shouldn’t be long.” In comes a female doctor that I have never met with before. She askes a few questions and I finally break the ice with “kinda hard coming in blind with a patient that you’ve never seen before isn’t it?” We both laughed and were good to go from that point forward.
She too asks a few questions then puts on the ole rubber glove and askes me to open my mouth! Then she proceeds to run her index finger all around my mouth, upon completion I tell her, “That was interesting.”
She starts to walk out of the room, I’m thinking it’s all over, then she says that my doctor will be in to see me next.
Wow this is my lucky day, everyone is going to have a turn asking questions and prodding me in the mouth!
My Doctor arrives and asks even more questions. Then asks if the nurse has already numbed my nose. I’m thinking uh oh, I’m about to get scoped, which is always an interesting feeling. As he gets the numbing medication ready, I inform him that my ENT has better equipment to numb my nose than he does. He asks me if my ENT told me to tell him that. I said no, it’s just coming from a patient that has had a lot of stuff stuck down their nose over the last several months. Just to get him again I told him, “You’re not going to let an ENT have better equipment than you are you?” We both get a laugh. Of course at that point I realize he knows he’s about to have the last laugh as he asks me to lean forward with the scope in his hand and proceeds to stick it down my nose. Wow, was it uncomfortable today as he slid that scope down my nose to look at where the tumor once resided. It brought a tear to my right eye! And have I ever told you what a pleasure it is when he pulls it out?
He said things looked fine and then came the reality of having had cancer. It all came back around when he said we need to set you up for a head and neck CT scan. Then we’ll need to keep a check on your blood work. I need to set you up an appointment with your oncology doctor.
There is nothing like being reminded that we need to keep a watch on all this, then knowing that there will always be more tests, scans, and blood work to do – forever. I just hope I don’t have to have that Bone Marrow Biopsy thingy done again – that hurt!
Oh well, watcha gonna do?
Until next time…
September
September 4th
I visited the Doctor a couple of weeks ago… While there I was informed that I will still have some good and bad days! It’s been 4 weeks since my last treatment and I’ve been feeling much better – whatta ya mean I’ll still have some good and bad days?
Well, that following week I started to get sick at my stomach again! Had a few days in which I felt tired again. All I could think of is – What’s up with this? I had been feeling pretty good, trying new foods and all that stuff.
So, today I decided to take action. I searched the web for any information I could find related to diets after radiation etc… I’m tired of this junk! Well, I found a lot of stuff, none of it was what I wanted to hear. It seems that it’s going to take a while longer to get back to normal – as normal as I get, anyway.
New approach…
I have decided not to get upset when I can’t eat food. Every time that I tried to eat real food and couldn’t, I got depressed and upset with myself. My new approach is now to just get the calories any way I can and the real food part will eventually come.
Can you say, hello Ensure, hello protein shakes, hello to whatever else will keep me ticking and moving in the right direction!
Currently my real food selections consists of:
Grits with Fried Eggs mixed in (these taste pretty good)
Yogurt (very sour and distorted)
Chili (distorted)
End of list…
Physically speaking…
I have lost some weight but not a ton but it is noticeable now. I’m actually closer to my BMI correct weight (I do not recommend this program as a weight loss program!)
I keep a nasty taste in my mouth and try to equalize it with gum.
Have a fat yellow stripe that goes down my tongue (better than down my back)
I’ve let some hair grow back on top of my head but the radiation is still claiming victory on the hair on the back of my head – looks really weird.
Trying to exercise again.
I just asked my youngest daughter what else I’ve been and she said “You’ve been a pain”, maybe I’m doing better than I thought at returning back to normal!
Until next time…
October 8th
OK, enough already – again, I know I haven’t posted in a few weeks, close your pie hole and read… 🙂
A few weeks ago I went for a CT scan. This will become a part of my life! Had one with and without contrast (Doctor Talk) which means one with and one without this stuff in my veins. Of course I had to wait over a weekend to get the results.
Patiently await the results. Patiently, Patiently, no more patience, I call the Doc for the news.
Nurses are busy but they will call me back. Phone rings, I answer – I’ve been trained that way, something about that bell. The nurse literally does a drum roll then lets me know everything is negative. Negative? What exactly does negative mean in relation to cancer? So I ask her, is that good or bad? Let’s develop a new system like – Tony, it’s all good or it’s cool or something like that! Where else do we use the work negative to mean something positive? Everything was good!
These days the number one question I get is, how’s your taste?
It’s better, but nothing to write home about. I have had a few victories. While I do have some taste most things are highly distorted still. I say most things… Last week for my birthday dinner we went to Red Lobster. I’m thinking this is going to be a cruel trick if it tastes really, really bad. I’m used to things tasting really bad, it’s the really, really bad that really gets you! I order stuffed flounder with scallops, with water. The water had traces of a DIRT taste. The meal? Believe it or not, it tasted pretty good. Not like it should, but hey, I’ll take a little progress any day these days! So I was a happy birthday boy.
I have since realized that tuna fish tastes pretty good. I’m starting to see this fish motif forming. Maybe a trip to Destin, Florida is in store!
Now, the biggest comment that I get these days is, Tony I see your hair is growing back! That’s right, I’m no longer bald. The hair in the back has started growing once again, much to everyone’s delight. I personally liked the bald look. I did notice one day when I was bald that when I made this certain face I looked like that demon thingy in Passion of the Christ. Oh well!
Julie and I also had the opportunity to go to Disney together. A great family in my church covered the condo for us! It was greatly appreciated. I will try to write an entire post about that trip soon.
I’m praying that my taste is good by Thanksgiving. It ws bad enough to go through July 4th without any taste but Thanksgiving? Please! But I must admit, at the rate things are progressing I don’t see it happening. But, having said that, I am now eating more real food than shakes, so that’s a good thing!
Until next time….
October 23
Ok, I’m back. Told you I’d tell you about our Disney Trip. Ok, I know it’s a little off topic but I’ll add some cancer stuff at the end…
Julie and I had the opportunity to spend a week in Orlando, just the two of us. First time we have been away from our kids for this long, I was worried that I might drive Julie nuts, I have the capability! In fact this was the first time that I had taken 2 weeks off in a row. Several ministers that I respect encouraged me to do this.
Had a multiple hour delay from the Huntsville airport due to a door seal not closing properly. That’s cool, take your time and let’s get that fixed before I get on the plane! Arrived in Orlando early afternoon, rented a car and we were off to our hotel which was absolutely number one. Thanks to the family that helped us with the room!
At the time I was very nervous about this trip. I was still not eating well and didn’t know how my body would respond if I didn’t get food at just the right time like I would if I were at home. So, first stop after check in was Publix! Got a bunch of fruit and milk! Good to go.
I know you don’t want all the details – like nobody really likes looking at someone else’s vacation pictures! But…
We went to see La Nouba, the circus on steroids, and we purchased 5 day park hopper passes to Disney.
This would be the first time I was away from my comfort zone of having food I could eat at my house. This honestly made me nervous, very nervous. I can’t describe what it feels like when I start needing food. It’s very uncomfortable to the point that it almost hurts. When we scheduled the trip we were hoping that my taste would have progressed further than it actually had. All in all it went very well. I mostly ate fruit and ice cream! I now what you’re thinking, how great is that. But remember it all tastes really horrible to me. It’s just the lesser of 2 evils.
Overall we had a great time. My eating situation was tolerable ans I survived.
As of this writing I’m doing much better.
My churches, Genesis and The Harbour continue to be very understanding and encouraging. I have the best group of leaders in both churches that a minister could ask for!
Last week it seemed that my taste had taken two steps backwards but last night I ate some Chicken stuff that tasted pretty close to normal (didn’t really like the taste of it before I went through this Cancer stuff), so the joke was on me! Other stuff still tastes bad!
I am back in the gym which is a big part of my life.
So I’m still looking for the miracle of taste by Thanksgiving!
I want to encourage you to seriously think God today for the little things like taste. There are so many things that we take for granted that we should be thankful for and taste is one of them.
Until next time…
December 12
Ok, so it’s been a few weeks and I have a lot of news to share…
Let’s start with my last doctor visit.
Thought it would be a check up of sorts. It was a little more than I had expected, boy did they take a lot of blood! Then there was the forever wait in the exam room. So here is the scoop after talking to the Doc. He told me that they would not bother me if the blood work looked fine. After a couple of weeks I have not received a call! I may call anyway just to make sure.
So what else did he say? He said that we would meet every 6 months to do blood work. At the 5 year mark we will go to the once a year plan. Then after 10 years if I’m clear of any Cancer then they will say I am cured. Would have liked to hear that I’m cured in less than 10 years but oh well – whatcha gonna do? In-between these visits I will also continue to see my Radiology Doctor and ENT.
So how is my food situation?
Well, it’s better but not great. Thanksgiving was a real let down as far as the food was concerned. Had a lot to be thankful for – I got that, but it’s depressing to miss July 4th and now Thanksgiving in the food arena! Let me just say that dressing has a dirt taste!
I do eat select regular food now more than ever. So that’s a big plus. But, it is not a great experience. I do not look forward to most eating situations and it has created a problem with any type of traveling. Unfortunately it’s hard to understand and even harder for people to understand. That’s the most frustrating part, there is really no good way for others to understand what this taste thing is all about and how it messes up your regular activities in life. You feel like you’re hungry all the time because you can’t get full. If I don’t eat at certain times it becomes even worse.
So here is the blue ribbon list of desired food:
Zaxby’s Hot Honey Mustard Wings
Rosie’s Chicken Nachos
McDonald’s Bacon Egg and Cheese
Egg Sandwich
That’s about it! All other food I just do my best to eat. Not all of it is a struggle like it once was, yet it’s not the best. Depending on the food, some becomes a paste in my mouth as my mouth now gets mega dry.
So, I’m making progress, and realistically it hasn’t been that long since my last radiation treatment. I had hoped to be eating better by Thanksgiving but it didn’t happen. Christmas is the next goal but I don’t see it happening.
Oh, yeah, the Doctor said that the possibility exists that my taste and mouth moisture (OK, I’m dancing around saying that the spit in my mouth isn’t working at full capacity!) may not get any better, but due to the progress that I’ve already made, I think it will. Even if it doesn’t I can get by as is.
Overall life is good and my family and churches continue to take good care of me and continue to put up with me! Except for my food situation life is close to what it once was. So life is good!
Until next time…
January 29
OK, it’s been a day or two so here’s the skinny…
Christmas food did not go that well, so I’ve missed another wonderful eating event.
Next I’m hoping for July 4th which I missed last year (this was the day I decided to shave my head last year!).
My hair is finally back!
Visited my Oncologist several weeks ago and had some blood work done. He told me that he will be checking me periodically along with my Radiology Oncologist and my ENT. After 10 years if there hasn’t been any sign of Cancer, they will declare me cured! Excuse me, I thought you said 10 years? Yeah, it’s 10 years! Would like to have heard a smaller digit, but oh well. He said things looked good!
He also reminded me that this type of cancer can manifest itself anywhere in my body. That if it should return it won’t necessarily be in my throat where I found it last time. Therefore, I’ll continue to do periodic blood work etc… He also told me that this type of cancer doesn’t always show up well on any type of scan. Thanks again!
I just returned today from my ENT a few minutes ago. I was spared the light scope down my nose today. He pushed all over my neck, looked in my throat as well as my nose and said all was well! Woohooooooo!
You never know when you visit if they will find anything, so to say it’s an adrenaline rush while they are looking at you is an understatement. Can you say anxiety!
I have also returned to the gym and my strength is coming back.
So things are great for today!
Here’s the progress report:
I’m eating more real food than ever before. Nothing tastes correct but some things are close – very few. Every other week I try to eat the same thing to see if there’s been any progress.
The biggest problem that has gone south is my saliva. My mouth will dry out after a few bites of food make it a paste in my mouth. It’s much better but still would like to have that moistness when chewing my food.
Foods that are pretty good:
Egg Sandwich
Bacon, Egg and Cheese – Just got really good this week! No need to worry about cancer – the bacon grease may take me first! 🙂
Italian Sub fully involved from Firehouse Subs
Homewrecker Burrito from Moe’s (Welcome to Moe’s)
Cheese pizza from Donotos Pizza
Spicy Chicken Taco from Taco Bell
Recent Bad food (can eat it but doesn’t taste so good)
Five Guy’s Cheeseburger
Subway
Well, there you have it!
Thanks to everyone for keeping me in your prayers, with Christ I don’t think I would have kept my wonderful outlook throughout this process!
Nobody likes a whiner! That’s why I’ve tried to keep this whole blog a tongue in cheek thing and never whine about my situation!
Until next time…
