| THE SEBASTIAN STORY |
Post Radiation Issues
Chapter 1: Prediagnosis Through First Surgery
Chapter 2: Radiation Treatments!
Chapter 3: Radical Neck Dissection!
Go to most recent update - at the bottom of this page . . .
I have received many comments to the effect that I should have a "Chapter 4"
for what has gone on since the end of my radiation treatments/surgery. I
agree, so here it is! Chapter 4, chronicles all the post radiation
information that used to be at the end of Chapter 2 (Radiation Story). I
hope this makes things easier to follow. If not, let me know!
You will find links on the BDS Site home page, and SCC intro page
that will take you here. If you are a repeat visitor (and thanks
for being interested!), you can click H E R E to go
directly to my most recent entry at the bottom of this page.
This page will cover how things have gone since 11/97. I'll add any post radiation observations to the following list. I know that there may be complications later due to the radiation treatments. One concern of mine is thyroid problems. The stats say that 30% of patients with radiation to the neck/thyroid area may develop hypothyroidism. This can be regulated by thyroid medication. Unfortunately, this is the risk we must take to have a shot at life. Check back as time goes on, and "reload" your browser so you are sure to view the most current version of this story.
Burned skin is not an issue anymore. The "tan lines" are barely noticeable now (I attribute much of this to the TheraCare). I'm sure that if you are a fair skinned person, this would have a more adverse effect than if you are dark skinned.
Every once in a while I get a sensation of taste. It's frustrating, though, because it only lasts for about the first bite of something . . . It takes time.
Things don't seem to get better on a daily basis - rather every two to three days, I notice an improvement in some area. I still have lots of fatigue if I try to do a lot in a day. Went back to work this week, but not full time yet.
12/4 - I returned to work today. Had to get a release from the company doc. He basically asked me what I felt I could tolerate, and told me that I could go back for "4 - 6 hour days, as tolerated." I told him I only had a couple of actual "work" days, and then I would be going on a business trip to Orlando, FL, after which I would be on vacation for the rest of the year! I discovered that I could taste Dr. Pepper! I never cared much for it, until now. Works well with Skyline Chili (which was one of the last things I could taste!).
Feeling much better with the first bit of good news. Physically, I am having some pretty strange stabbing pains in my neck that shoot to my left ear. They only last a few seconds - then they are gone. But, they come back in a minute or so. Neck skin is still taut, and numb. I'm getting larger bites of food into my mouth. No more sore throat, except for "abrasive" types of food - i.e., pork, steak, chicken. Main complaint is dry mouth (especially at night), earaches, numbness in my left neck and jaw, and limited head movement. Need to stretch the skin as much as possible . . . Things are much better than, say, a month ago!
Taste is at about 30% these days. No more earaches. And no more "twitches" in my neck, but it is still very stiff. I can move my head farther to the left than to the right. One odd thing that I've noticed but not mentioned before - since about the 4th week of radiation, I've had a weird sensation in my teeth. Yes, my teeth. Have you ever put a ceramic mug in the microwave? You know how the timbre changes (i.e., if you tap a spoon against the side of the mug while stirring)? That is how my teeth feel. Sort of brittle, or dried out, if that can be. That sensation is lessening somewhat, but I thought I'd mention it, since I did notice it!
Minor complaints at 8 weeks include: Muscle aches in my upper left back/shoulder. To even rub them is painful, because they are so tight. Fatigue is still an issue, although not major. I am finding that toward the end of the work week, I get pretty tired (by Thursday afternoon, usually).
I'm getting more taste back. It comes and goes. Some days things are more "vivid" than others. In general I'd say I have about 35 - 40% of what I had pre-cancer. And what taste I do have is different than it used to be.
Still have dry mouth, but I did manage to sleep completely through the night once this week (without having to unstick my tongue from the roof of my mouth)! Dr. Redmond said I could try 4 Salagens/day if I wanted to. I find that using Biotene products for dry mouth helps: mouthwash, toothpaste and even gum (though I don't use the gum much). Also, still using Prevident flouride toothpaste to stave off the xerostomia.
Here is something I consider a major "post radiation" consideration for you. I have been experiencing a very strange tingling sensation this week. It only happens when I tilt my head down, as if to put my chin down to my chest. When I do that (as part of my stretching exercises), I get a numbing sensation down my spine, into my buttocks, and behind my knees! It's similar to how you might feel after riding a not-so-smooth riding lawnmower for about 8 hrs.! I think I will start looking into this more, cause I don't like it . . .
Taste comes and goes from 40 - 50%. Flavors that come through aren't as full as before, but I sure have been eating non-stop! The odd thing is that I haven't gained any weight. But the good thing is, I haven't lost any either!
I found out more about my numbness when I bend my head forward. It is a condition called L'Hermittes Sign, or L'Hermittes Syndrome. I couldn't find a whole lot of information on it on the net, relative to radiation side effects. It seems that the majority of cases are related to MS. I was able to find three abstracts from references given to me by one of the radiation therapists on the AOL radiotherapy message board. Check THIS LINK for more info. It is a result of the demylenation of the spinal cord. If you experience this too, take heart - fortunately, it is supposed to be temporary! (This one was a total surprise to me!)
This coming Friday will be 18 weeks since surgery and radiation. I am happy to say that I am sleeping through the nights without having to get up and take a drink or use MouthKote spray. When I do wake up in the mornings, I am extremely dry, though. I usually wake up to find that my tongue and roof of my mouth are stuck to each other, but at least I made it through the night!
I have been feeling very good lately, despite a bout with a stomach bug last week. That required a couple of days off work, and a loss of another couple of pounds . . . but, I think I have passed another one of those milestones. My big news of this date is that for the first time since my surgery, I have reached 150 lbs. again! I have been eating like a pig. Breakfast. Snack. Lunch. Snack. Dinner. Snack. Scandishake with ice cream before bed. Looks like it's finally paying off . . . Now I'll probably start seeing hypothyroidism kicking in (another possible radiation side effect), and go too far the other way! Honestly, I have been feeling much more "normal" (whatever that is!) over the past couple of weeks. It's hard to describe. I guess I have more energy, and appetite. Food still doesn't taste the same, but I want to eat it. I am also eating faster. The bites are getting bigger. Why, I have even finished a couple meals at the same time as the rest of my family this week! That is a first since surgery. I count my blessings every day. Life is truly good, and I am thankful for every moment of it!
EMOTIONS: Here's an interesting story that bothered me when it happened last night. We had a bird in our return air vent inside our house. We were able to get him out of the vent, and out of the house. But, we needed to know where he came from. We discovered a hole in a section of screen in the soffit on the back side of our two story home. Had to plug it up. No problem - just get out the big ladder and nail a board over the hole until I can get some new screen, right? Well, my father was a painter, and I worked with him when I was going to college. I've never had a problem handling a ladder! Until now . . . Yep, I discovered that my limited shoulder movement is a real pain when it comes to this kind of stuff. I was able to get the ladder extended, and into position, with some difficulty. But hammering the nails through the board (even after getting them started on the ground!) proved to be very aggravating. My neighbor ended up helping me out with it. And for some reason, it really bothered me that I couldn't do a simple task that I could have done easily "before cancer." Maybe it's a guy thing or something. Yeah, things have changed. So, don't be surprised if you run into similar frustrations!
I have cut back on my Salagen to one-a-day. I am managing that fine, so far. I just have to stay close to a source of water! The only issues remaining today are: limited shoulder movement, dry mouth (eating stuff like crackers, cookies, chips, pretzels, etc. absolutely require a drink!), numbness in my neck and shoulder area, and tight skin on my left neck from the scar tissue. Every once in a while, I get some strange pains that come and go, but these seem to not be anything to worry about. I also sometimes have trouble swallowing easily. But I just have to try and keep a drink handy to help wash things down. The incision looks real good - faded away for the most part. Skin is still a little red from the rad tx. For the most part, I feel great. And I thank God every day for it . . .
I still attend my Wellness Community group meetings. I'll continue to do this faithfully, until I feel comfortable about leaving. This has been a big help to me. The members of my group have helped me enormously. That's what it's all about - sharing with people who have been there. No one else can fully know how you feel: emotionally, physically, mentally - or anything else unless they have experienced it themselves. Yep, we are a unique club . . .
One last note for this entry - My middle daughter graduated from high school last Saturday. I can't tell you how wonderful it was to be there to see it!! I was so proud, and so thankful to have been able to witness such an important event! Life is indeed precious . . .
I saw both my surgeon and oncologist today. I was given a unanimous "excellent" bill-o-health. This puts me to within only two months of my short term goal of 1 yr. My next goal will be two years, after which I will feel much better about things, since 95% of recurrences happen within two years. I guess after that, it will be 5 years (and one day), which is the official "remission" point for most cancers.
There are no new issues, I am happy to report. I still have the L'Hermittes Syndrome symptoms - though they have diminished by a very small amount. By this I mean that I don't get the "shock" when I bend my head downward as soon as I used to. But not by much. I hope that this will diminish more as the months go by. I still have the dry mouth, though I am only taking one Salagen/day. It's not all that bad as long as I have some water or ice handy. My left shoulder still bothers me somewhat. I have pretty much adjusted to the limited movement issue, but sometimes it kind of aches. This is usually associated with overuse. I have pretty good lateral movement of my head these days. My neck still feels sort of stiff, but I can look further to my right without turning my body. Swallowing can still be an adventure, if I don't have something to drink to help wash it down with. Especially the dry solid foods that I mentioned before. Solution: keep something to drink handy!
I have now gained 8 lbs over the last 7 months. The last three were added over the past month. I am now up to 154. I am eating more, and quicker. I think my taste has changed a little more . . . things are tasting a little different again. As a part of an extended family reunion weekend, I ate a meal at my aunt and uncle's house yesterday that was wonderful! I went back for second's and third's! It seems like I've been eating constantly for the last 7 months. Honestly, sometimes I get weary from the pursuit of lbs.!
EMOTIONS: One thing I notice every time I go back for a checkup, is that the parking lot for the Radiation Therapy Dept. is always full. This bothers me when I see it. I think of all the people that this represents . . . When I see the patients coming and going, I know how they feel. The fear. The unknown. The questions. The pain. It's truly tragic.
Believe it or not, it has almost been a year since my diagnosis! (8/29/97). It's hard to believe. In many ways, time has flown by, but in other ways it has taken half a lifetime - for sure! My next monthly visit will be my last monthly visit. Beginning with August, I'll go to every two months. Dr. G. says that the farther along I get the less likely that there will be a recurrence. That's good. Statistically, I am now at about a 9% chance of it returning. That is much better than my original odds . . . I'll take it!
This month I decided to stop taking the Salagen for saliva production. I was down to one/day anyway, so I figured I'd quit with the crutch, and see what happens. So far so good. I've mainly noticed dryness in the back of my throat, more so than in my mouth. Don't get me wrong, I have to keep water handy most of the time to sort of slosh around in my mouth periodically. But, the base of my tongue and lower throat seem to be real dry - things "stick" real easy back in there . . .
EMOTIONS: An interesting note here. When I was first noticed the lump in my neck that turned out to be cancer, we had close friends visiting from NY. I took a week of vacation while they were here, so we could visit. It was during that week that our water heater died, our 5 month old TV went out, carpenter bees were boring into our home and drilling into our living room, and - oh yeah, I was brewing a nice case of cancer. Needless to say, that vacation was the low point in my life. Over the months of my treatments I felt I really needed to plan a nice vacation for our family that would sort of mark my one year milestone (post diagnosis). We did just that. In fact we rented a nice house on the beach in North Carolina, in the Outer Banks. We even spent the week with our friends from NY that were here last year for the week from hell! It was real important for me to do this, and I can't quite put it into words, why. It was kind of like recapturing my life, and pointing it in a new direction somehow. We were a little worried though at the beginning of the vacation week, when my friend had to leave NC to go back to NY for an emergency. His father passed away. We were very sad to hear that, and I had a horrible sense of deja vu. I wondered if this could be the start of another "one of those weeks." As it turned out though, the time away with our families was wonderful, and extremely rejuvenating.
My point with all this is, if you have to go through something as physically and emotionally draining as cancer, I'd highly recommend setting a goal somewhere off in the future to go somewhere nice that you really enjoy. That way you will have something to look forward to when your life is in a better place, and when the time comes to actually go, you won't believe how fantastic getting away will be!
It is so hard to believe, but a year has now passed since my diagnosis! I am actually writing this on the evening of Labor Day. As I sit and contemplate the events of the last year, I think I will put my thoughts and feelings down on a separate page, for simplicity's sake. If you are interested, please go HERE for how things are going these days . . . Now that a year has passed, I will continue to document any new side effects or improvements as they happen. But I think where I am today, is about where I'll stay, as far as seeing improvements. And I hope that side effects will not worsen! Only time will tell. And, if it tells me, I'll tell you - I promise.
10/31/98 - Halloween 1998 . . . Pretty scary boys and girls! We just finished up with the two hours of little ghosts and goblins. The odd thing is that there seemed to be quite a few older kids coming around. You know, like, teenagers. Leah, our 7 yr. old, had a great time. She was a blue M&M. Cool. Made quite a haul. While I was sitting on the porch handing out the goodies, I looked up at the moon and stars and remembered this time last year. Last Halloween I was about a week away from the end of my radiation treatments. And I wasn't feeling too awfully good. I remember having TheraCare smeared all over my neck and cheeks. And, perhaps the worst thing was not knowing whether or not all I was going through would even do the "trick." No pun intended. I did make it though, and hope that I will see many more Halloweens.
I had quite a scare on my last doctor visit a week ago. I noticed a small bump on my right cheek along my jawbone. Very small, but noticeable. I mentioned it to my doctor, and he flatly said, "you have a node." For some reason, that made feel a little bit panicy. I just did not want to ever hear someone (a doctor) tell me that I had a node - or anything that might imply that I could be headed for a recurrence. Basically, Dr. Gleich didn't seem too concerned about it. He even pointed out that he had "a node" as well. And let me poke at it. He did say that I should come back in a month, instead of the two month schedule that I just started. His comment was that the node was only about 5mm, and wouldn't even show up on a CAT scan - and was too small to needle biopsy. He said to just keep an eye on it, and if it grew, give him a call before my next scheduled appointment. So I will keep an eye on it, and probably make it sore by poking at it every day wondering whether or not it really is growing, or if it's just my imagination. I think that there are many old "sayings" that apply here - like "once bitten, twice shy" for instance. I guess I will not be completely reassured until I know for sure whether or not this develops, or goes away. We will see. I just thought it was pertinent to this documentation that I am attempting to make... since it is a pretty scary prospect to consider going through another "ordeal." In fact, we (my wife and doc) discussed what course of action would be taken if this were to be a recurrence (again - I am hoping and praying that will not be the case). My options are surgery, perhaps additional radiation to a very small area. Not something I want to do. Nope, not at all.
One other sad thing that happened a few weeks ago. One of the group members in the Wellness Community group I attend succumbed to his cancer. Small cell lung. This was the first death in our group since I started attending over a year ago. I was able to visit him at the Hospice center a few days before he passed away. I told his wife that if there is one thing I am certain of in this life, it is that I hate this disease . . . and I can't express that anywhere near as strongly as I feel it.
I certainly don't want to leave on a depressing note, so I will mention an email friend that has offered to provide information to anyone that may have questions or concerns about financing cancer treatment. It's an issue that (thankfully) I did not have to deal with as I went through my treatments. But, I have come across folks that have not been so lucky. It's a very expensive prospect to fight this disease, and those providers expect to be paid for their services. My treatments probably totaled over $40,000. I only had to pay a few hundred of that, thanks to good insurance. If I would have had to pay that out of my pocket, I don't know what I would have done! If you have questions about this "PamRNC" has graciously offered to share advice she has come across. Her brother was diagnosed with this disease and as I write this, is currently finishing up his radiation treatments. Pam gives her credentials as an RN, certified in psych and mental health. And perhaps most significant, has a caring attitude. Click H E R E to send a message to Pam.
1/06/99 - Happy New Year!! I apologize for not putting an update up since last mentioning my concern about a "node" along my jaw line. I have received e-mail from several folks asking what's going on with it (thanks for your concern). The truth of the matter is, I have been so busy lately, that I haven't had, or I should say taken, the time to sit down and do this! The holidays were very busy with out-of-town guests, and family activities. I must tell you though, the holidays were absolutely wonderful! I won't go into the details, but I felt great, and ate great as well! Food tasted sooooo much better than Christmas last year. You can't imagine the difference! I also set a goal to redesign my web site over the holidays - and I did manage to get a good start on that.
The holidays were great for several reasons, but there was one sad note . . . we lost another Wellness group member just before Christmas. This was a surprise (at least to me), as we hadn't heard from him in while. He was only 35 and had two small children. And to happen right before Christmas - was even worse, all around. Melanoma. Again - I detest this disease with every ounce of my being! Sigh . . .
I am happy to report that the small lump along my jaw line has not changed. The official report from my doc says "don't worry about it, you are doing great!" Nothing has changed with it, and I am thankful for that. It's just a cartilaginous feeling bump that I can roll around under the skin along my jawbone. Smaller than the eraser tip of one of those 0.5mm mechanical pencils. So - if you have gone through this cancer business, and something like this pops up, don't panic just yet. Just point it out to your doc! BUT - No matter how many times a doc or (even yourself) tells you that "it is nothing," you can't help but wonder "what if . . .?" And I think that is human nature acting up on us! You know, the worry gene!
I have another bit of good news to report also. The symptoms of my L'Hermittes syndrome have diminished a lot over the last two months. In fact, I'd say that it is nearly gone now (thank God!). About the only time I get a "shock" is after I have been on my feet a long time (i.e., trying to keep up with my wife at the mall), and I look at the ground - or bend my head down (chin to my chest motion). Then it zaps me - but mildly. Really not a major complaint at all . . .
One new thing I have noticed happening is a strange muscle spasm type of thing that occurs on the right side of my neck. It seems to happen sometimes when I yawn, or turn my head a certain way. It doesn't happen real frequently, but it is new. I could best describe the sensation as similar to a lockjaw kind of thing, where the position of my jaw sort of cramps into a locked situation. And I have to wait a few seconds before I can get it to relax. When it happens, I tend to clinch my jaw very hard to combat the cramping. And then it relaxes. It's very strange. I asked my docs about this one, and they said it is a type of muscle spasm. I have had this happen in areas in the back of my neck too, but only a few times. This particular phenomenon has happened more than a dozen times in the last couple of months. I almost wonder if it is not related to the diminishing L'Hermittes symptoms. Hey, I lose one and I gain one, I suppose. It's nothing serious, but it is aggravating to feel like I am making headway, with small improvements, only to have something else pop up. Hopefully, it is temporary, and will not get worse!
In general, my life is really good right now. In fact, as I have told several e-mailers lately, it is almost scary. I wonder when the hammer is going to fall and konk me in the head. About the only issues (other than the "lockjaw") at this point (and I am now 17 months since diagnosis; almost 14 months since surgery/end of radiation treatment), are the still tight neck skin where the surgery was done; dry mouth from radiation - which I feel adds to difficulty in swallowing; and the limited shoulder movement. As I have said before, these side effects will no doubt be with me for the rest of my (hopefully) long days. That's what the docs tell me anyway . . . But, I am glad to say that I continue to see improvements here and there, like the recent diminishment of the L'Hermittes symptoms. And my taste continues to improve, not so much in terms of "how much," but more as sensation. Since radiation, flavor has always been different, even after the taste came back - but now the flavor of certain things is much more full. Barbecue sauce for instance. It's still not what it once was, and may never be, but I keep hoping!
EMOTIONS: When I received the news that my friend had passed away, my faith was immediately shaken. I feel like I am praying, and hoping, and sending positive thoughts out to these wonderful people - trying to do something to help. Pleading and begging at times! But, when after all that effort, we still lose one, it makes me wonder whether or not God is even listening. I hate to admit that, but it is true. At times I just don't understand the "mysterious workings." I know it is not our place to try and figure out when and where we will go, or even why. But, when it feels like our prayers aren't being heard, it is hard to keep the faith. Ah, but then I think about the others in the group who are still with us . . . and they are in the majority. So, perhaps things aren't as dire as I imagine them to be, eh?
As for me, and my current status, GREAT. I am feeling wonderful at this writing. I will go in for my next two month interval check up this Thursday (2/11). I will update this page with any news after that visit.
It was an interesting day . . . sort of like old home week. While I was talking with one of doctor G's other "new" patients about what she can expect, my wife was out in the lobby talking with none other than Mr. Eubanks (who was one week ahead of me when we were going through radiation treatments together)! I didn't get to see him, but my wife said he is doing fine. His surgery was much more complicated that mine, and I pray that he continues to live a long and healthy life! Dr. G said that I am doing excellent, and that I look great (health-wise that is - hehe). Weight has not changed a bit despite eating lots of stuff that would normally add the pounds! I think this is due to fact that I eat much slower than I used to . . .
I had some questions for Dr. G - one of which was about the muscle tissue directly under my chin. I have noticed that in addition to the weird "lockjaw" sensations I occasionally get, that muscle seems very "firm." I asked if this was something to be concerned about. His comment was that it is a result of scaring from the radiation treatments. Ah, more side effects from radiation . . . I think that the source of those strange lockjaw type pains are somehow connected to tissue in that area. I have noticed that I sometimes get this sensation when I take a drink of cold water, trying to swallow quickly. It's not all the time, but it is something that I wonder about every time I take a drink. We'll see where this goes . . .
When we went to visit the Radiation Dept., I was surprised to find that one of the trainees that was helping out when I was taking RT, is now a full time employee! She (Sharon) is pictured on my photos page, and is a very caring individual. I had some questions about radiation treatment to a pregnant woman (from a pregnant visitor who was recently diagnosed with SCC). That was the first time I had heard from anyone in that situation. It's a tough call to say the least, but the general consensus is that there are issues to consider. I spoke with a radiation physicist, radiation oncologist, radiation therapist and my surgeon. The bottom line is that it's a highly personal decision, since there is always a possibility of external radiation scatter that could affect the fetus. The good news is, of all the types of cancer that could be treated with RT, head and neck puts the target area the furthest from the fetus. This is obviously something that MUST be discussed at length with your "team" of professionals. My feeling is that you have to get all the information you can from them, and get all your questions answered to your satisfaction. There are certain things that can be done to shield mom's stomach from the radiation, and the percentages for problems (one of which could be birth defects) due to the radiation treatments were given as about 1 in 1000. Similar to that of danger from taking antibiotics during early pregnancy. I certainly don't know much about this, but think it is something you would really want to inform yourself about if you find yourself in this situation! My personal opinion is that you would want to do whatever you can to ensure that the mom/patient is treated - giving the best possible chance of getting rid of the cancer . . . it's a really tough one to consider.
Well! It sure has been a busy month. So much happening... some good, some bad. I always like to start with the bad (when there is also good to report).
Bad news number one - A few weeks ago I was driving home on a rainy day. Lost in deep thought, yet mindlessly navigating the traffic while marveling at how the beat of my windshield wipers was exactly in time with Anita Baker's pop hit Sweet Love. I was on my way home from another funeral... we lost another group member at the Wellness Community. Jeff was a group member when I started in Sept. 1997. All I can say is that he never got a break, and I feel terrible about it. He was a tremendous person, with the most positive outlook. Sometimes cancer seems to just sneer at you, and dare you to try to beat it. I feel his case was like this. Everything he did to fight this disease (and I couldn't adequately describe the pain and suffering this man endured) seemed to result in a brief period of unknown... Did this work...? Will I have more time now...? When will it return...? You see, he was diagnosed as terminal from the beginning. He also had squamous cell cancer, but it was in his colon (very rare to have it there, as I understand it). But, the up side (Jeff always saw this!) was that if he could hang on long enough, a breakthrough may change things for him. Well, as we (cancer patients) know, things aren't moving nearly fast enough in the area of research toward new and better treatments. And a cure...?! Hah, what we wouldn't give for that! No, the breakthrough didn't happen in time for Jeff, but there are plenty of us left praying and hoping for some good news that might give us some solid options. Jeff, we will miss you, buddy . . .
The second bit of bad news is that the grandmother of my two oldest daughters only has a few days left with us. Lung cancer. Yet another life/family devastated! I tell you, it is almost beyond words sometimes, how this disease affects us. My daughters are understandably grief stricken . . . first their grandfather, then their dad, now their grandmother. Cancer everywhere! It is depressing. But, I keep telling them that what they must learn from this is that we are only here for a split second in the big scheme of things. We must do the best we can with the time we have on this earth. The examples that these courageous family members have provided are priceless. I tell them that what they are witnessing is how to pass from this world to the next with great dignity. Yet another example of how to do it right! I try to encourage them to not dwell on the sadness and loss, but celebrate the life and wonderful memories. It was our
privilege to know these people - and to be part of the same family . . . well, we have been truly blessed!
EMOTIONS: Sad . . . but I feel that if I am going through something like this, others probably face similar times. In fact, I know it - I hear stories all the time from people that actually make me feel lucky, even though I might be having trials and tribulations popping up . . . Just remember, no matter how bad you have it, someone else out there probably has it worse. Seriously! I have to remind myself that even though I am sad about all the bad news lately, hey - I am still here and doing well. I can at least be here to offer some advice to my kids about how to deal with these things . . .
Now, the good news... nothing earth shattering really, but I am happy to report that things in my life are going very well. This is true because I haven't had any more of the "lockjaw" experiences I noted previously. And my L'Hermittes symptoms are very infrequent - they only seem to happen after extended periods of walking or being on my feet. Also, I had a dentist appointment recently, and - "Look mom! No cavities!" This is an especially good thing to hear as time passes following head and neck radiation treatments. I pray that things continue to stay boring. Actually, boring is something to be excited about! I'll take boring any day, and even for the rest of my life - if it's a nice long boring life . . .
Since things have been pretty hectic lately, I haven't had a chance to start on the Head and Neck Cancer message board. I hope to get this started soon. I will send out a mailing list message and post it on the site when it happens.
With the onset of warmer weather, I am again finding that I need to keep a bottle of water handy due to my dry mouth. I went for a hike through the woods with my wife and 7 yr. old daughter today. Going up and down some hills, I found myself wishing I had brought some water with me. Next time I will, for sure. About the only other long term complaint I have, as of this writing, is an aching in my left shoulder. This seems to be exacerbated by all the honey-do projects I have been doing lately. I hope as I get more into the active summer months, this will subside (it wasn't an issue over the winter months)! Taste is good, and head and neck movement is good. Shoulder movement is still limited, and makes me feel like a gimp when I try to do anything involving reaching above my head, or holding anything with substantial weight out from my body, with my left arm. It just doesn't work the way it used to. What should I expect, I guess. The muscle is gone!
I have been talking about putting up a message board, but after thinking about it, I feel it would be much better for visitors to go to the Head and Neck Onc Digest board/email list, on the ACOR site. It really is convenient and already has a lot of subscribers (over 150 H&N patients, or spouses of patients). So, I will officially suggest that if you are interested in further networking with other patients, or want to ask questions to other patients that may have a closer match to your specific diagnosis, go here:
I don't know if you need the information, but I posted a couple of new info links on the links page. I have received some questions about lymphedema associated with our H&N issues. I put up a link to a site that has some info on it. Also, I added a link to the Support for People with Oral and Head and Neck Cancer web site. I have been talking to Nancy Leupold, who started the SPOHNC newsletter years ago after her own diagnosis with head and neck cancer. The site is a good one, and definitely "up our alley." If you want to subscribe to the newsletter, you can get subscription info there as well. The newsletter comes out 9 times per year, and costs $20 (tax deductible). In fact, I just sent in my new subscription this weekend.
Well, the news didn't stop there. I learned that a recently retired woman from where I work also passed away. This time it was breast cancer. She did really well with it, though, as she was originally diagnosed in 1972! She was a strong woman.
And the news didn't stop there either! Another site visitor wrote telling of the
loss of her husband. And a good friend of my wife's was told her lung cancer had spread to her brain. She is undergoing radiation treatment for that, but this added news just makes us wonder if any of us will survive this seeming epidemic!
I just needed to write this, because I am always trying to provide positive help and encouragement to site visitors and anyone who comes up with this diagnosis. But, the fact of the matter is, things don't always work out the way we want them to... It really upsets me when I receive bad news, but this week has been one of the worst. Even considering this, the good news is that the majority are doing well. I often hear of recurrences, and that fear is my worst side effect at the moment! I think that is the case with most people who beat cancer. It's like it is always lurking there, waiting to leap out at you in a weak moment. But, if we stay strong, perhaps that weak moment will not be so likely to arrive... More next month. And hopefully, it will be better news.
In general, things are going great for me. Unfortunately, some of the other people in my Wellness Group haven't been so lucky. We lost a group member to breast cancer a couple of weeks ago. She was my middle daughter's 3rd grade teacher. A wonderful woman, and typical of the type of person the world needs more of! She made a real difference in my daughter's life. And we will never forget that. To this day, my daughter says Mrs. Hocker was her favorite teacher. And Amber is now in college! (I know I have put up a lot of sad news lately, but these people have given so much of themselves in their lives, I hate to just not say anything in remembrance).
I really don't have any new issues worth mentioning about me, but we did have a great new article in our local Cincinnati Newspaper recently. It is about a new radiation system called the LEXAR system. I looks promising. If you want to take a look at the article, check here. I don't know how long this link will stay active, so if it fails for you, my
apologies (please drop me a line to let me know it is bad).
Well, I did make the decision to "graduate" from my Wellness Community group. That was one of the hardest things I have had to do since starting my road to recovery. I left a group of very caring individuals, each of whom know exactly how it feels to be a cancer patient. The fears, pain, stress heartaches, family impact, emotional and psychological effects... all affect us when dealing with "cancer." That is why that group of people was so special to me. It was the only place I could go where I could just sigh with relief, and let my hair down. Conversation came easily. People could laugh, cry, be mad, or happy... it didn't matter, because all these emotions go along with cancer. And they are a very heightened set of emotions, when compared to normal life's versions.
Why did I move on? Well, because I felt it was time... I wanted to be a part of the group to provide hope and support for new members coming in. You know, to show that the dragon can be whipped. It was getting to the point, however, that I had been a part of the group for two years, and there were newly diagnosed people coming in. And I didn't want to deprive someone of support by taking up a spot in a group, if the group was full. It was difficult, but necessary for me to do this. It truly was a feeling of graduation. And I learned a lot from my course...
As I write this short update, I feel I should mention that having graduated from my WC group, I now rely heavily on the support of the courageous folks in the ACOR Head and Neck Listserv Digest. I have mentioned this online group before. It is a very similar group to the WC group, except of course, it is not moderated, or facilitated, being an online mailing list. You can read and say nothing, or post and start a conversation. But, the feelings, needs and fears are the same. Plus this is head and neck specific, so there is a wealth of support for this specific type of cancer. There is a link if you scroll up a couple of pages here, and I have a link on my homepage, and elsewhere on the site - if you are interested. There are currently over 200 head and neck subscribers on the list!
With this update, I have also added a few links to some important information about the general battle against cancer, help for getting prescriptions if you don't have insurance coverage, and more. Check my homepage and the Links page for NEW entries.
Once there, you can go to "Join a List," and scroll down to the Head and Neck Onc list. Join it. And you will automatically get a daily email "Digest" including all posts for the day (typically 4-10 per day). This is really a good resource, and I recommend it even if you don't feel like posting, as the people who post there are friendly, knowledgeable, and certainly understand where we are coming from!
When I go in for these checkups, I always ask about any new treatments on the horizon. Dr. G. is a pretty skeptical guy, generally. Not out of negativity, rather realism. He looks at things realistically. And the fact that he is pretty excited about the state of gene therapy, is good news! The phase two clinical trial he has been working on for a few years now, is going for FDA approval. If approved, this will provide another standard front line treatment option, in addition to surgery, radiation and chemo. If you are new to all this, and looking for information on what can be done for your situation, be sure to ask your doc about it. It may be available in the near future.
Dr. G. is also encouraged by the developments in the area of cancer detection by testing saliva (as well as blood and urine). Although the current status of this methodology is such that any cancer detected by testing the saliva, would be indicative of a fairly advanced stage of cancer (i.e., the number of cancer cells that would have to be present for detection would mean the cancer has progressed significantly), the groundwork is there for further development. Dr. G. feels this will lead to something very useful, in time.
My radiation oncologist concurred that I am doing fine. As usual, he told me to make sure I (tip:) use sunscreen this summer, to minimize sun damage to my irradiated neck area. When asked what is new in the land of radiation therapy, he indicated good news on the new computer enhancements that are allowing increased accuracy in treating tumors that are irregularly shaped, i.e., those that wrap around spinal cord, etc.
Things do seem to be moving ahead in many areas of cancer research and treatment. As usual though . . . not quickly enough!
8/29/00 - I posted my Three Year Update here, if you are interested in the thoughts and emotions I wrote down for my doc visit.
As for side effects and physical issues, as I discussed in my three year update, they seem to be taking more of a back seat to the emotional and psychological issues of being a cancer survivor. My main physical issues seem to be dental in nature. I have noticed some zinger tooth aches just in the past couple of months. My recent dental checkup was fine, but I am having lots of sensitivity to cold in a couple of teeth. And I feel that I am putting a lot of pressure on my jaw and teeth while sleeping. The dentist said the sensitivity may be due to occlusion. If it continues to be a problem, an "appliance" can be made to keep things lined up properly, or the occluding teeth could be shaved to minimize contact. For now, I plan to monitor. Wait and see.
Not much else to report (happily). As usual, I will post news from time to time, so until next time - take care!
2/20/01 - My wife pointed out some sad news in our local Cincinnati paper - that one of my Wellness Community group members passed away on Valentine's Day. Although I quit attending my group meetings over a year ago, "our group" got together a few months back for dinner. It was a great time, and most of the folks were doing well. This man knew there is no cure for his type of cancer - multiple myeloma. That didn't stop him from educating his self, and being a self advocate. He knew more about his disease than many doctors, I am sure. This pretty much ruined my weekend. He was one of the original members when I joined in 9/97. Was 45. Had a family. And a pilot's license. And dreams... things to do with the house, places to go with his family, and time to spend with his son. As with the previous posts where I have noted sad news of this nature, it just makes me more aggravated that we can't come up with some means of whipping this dragon. Kip - we will miss you, bud . . .
As for me - I continue to plod along. Life is good, and I am thankful for that. I know it could turn on me any day, but I feel great. I have noticed a strange sensation lately... I can be sitting in a warm room (like my computer room where I am sitting right now - hot!), and get what feels like an ice cold breeze blowing on my neck (surgery side). That part of my skin is pretty much dead - with no feeling due to the loss of the spinal accessory nerve. It is very strange to have any sort of feeling in that area! It comes and goes in about two to five seconds. If I touch the skin, it feels just like the other side of my neck. Warm. Really weird. I will be asking my doc about possible neurological activity that might explain something like this.
8/18/01 - Whew - It has been a while since I last added an update, hasn't it? It is late in the evening (early morning actually), and I just returned from a two week business trip that I did not enjoy at all. There were very long hours spent trying to satisfy someone else's idea of where we should be on a project. Very frustrating. Every day, all I could think of was how badly I wished I was at home with my family. It actually ached to think about it. Home now though, and trying to catch up on some things. The house is quiet. A good time for thinking. And one of the things I am thinking about is the fact that at the end of this month I will be celebrating four years since diagnosis!
It is interesting how after time passes, that we just quietly slip back into the pressure cooker of life. The "old ways . . ." People we work with/for on the job don't let up on their expectations of us just because we had cancer. The current business climate is one where people are being let go from their jobs, in a panic move by employers to improve profitability. And those who are left have to pick up the slack. AND continue to perform their own duties. It's that God awful "bottom line." Seems the corporate hoodoos worship it, and woe to anyone who gets in the way of p r o g r e s s . People's jobs are sacrificed for it. The problem is, entire families are affected. Some of those who lose their jobs can't easily go out and find another one. Some folks have been in the same job since high school many years ago. They may not have skills other than what they learned on the job over the years. Many of the baby boomers in the work force are getting to an age where losing a job could be devastating. Folks in the 40-60 range are facing the difficulties of aging parents, and raising children (many of which might be in the college years by now!). The prospect of losing a job could be devastating for sure.
So why am I rambling on about this? I guess because I am feeling frustration about my own place in life. I do have a job. And I am thankful for that. But, lately it has been extremely demanding. And four years ago when I was diagnosed with cancer, I said I would never let job stress get to me again. Yet, here I am in the middle of a very stressful project at work. I suppose one thing about the situation that really bothers me is the total disregard for people's lives. And their families. The expectations are that you will put in the amount of time necessary to get the job done, on time. Whether it is 16 or 17 hours a day, or whatever it takes.
In the back of my mind, I have a secret knowledge. One that stems from my cancer experience. One that the "project" people aren't privy to. One they can't imagine. Sadly though, that doesn't matter one iota. I can keep many things in a perspective that the workaholics cannot imagine. You see, once you have stared death in the face, the urgency of trying to meet work deadlines takes one a much different perspective. I am sure they want to meet their deadline, so they can collect on their bonuses, etc. More power to them. But it shouldn't be at the expense of others' health or well being. And that is what it feels like. Anyone not pushing themselves to the absolute limit, physically and emotionally, isn't doing their share. Bah.
Ok. No more on that topic, but I had to vent a little. It just burns me up, I guess.
So, at the four year mark, I feel very good. Believe it or not, I am still noticing very small improvements, even after this long. My ability to taste is good. And, I am actually eating a little quicker than I was when I last updated this page. I can finish a meal within about 10-15 minutes of "normal" people's eating rate. It's nice to be able to not hold everyone up for a half hour or more! When eating out (lunch/dinner) with colleagues, it is still embarrassing to be sitting there after everyone's plate has been taken away. Oh well . . .
As for new things to report about, I really only have one thing that has been happening - just lately. It concerns a sensation in my neck and head. I can be sitting still and suddenly I feel an uncontrollable twitch in my neck. It's like my head wobbles a little. The sensation is similar to feeling my pulse pounding in my neck and head, causing my head to move ever so slightly. Very strange. I read a while back that the radiation to the head and neck to treat SCC has a detrimental effect on the small blood vessels in the exposed areas of the neck. It tends to create scar tissue and the blood vessels become hard, and blood flow constricted. Perhaps that is what is happening. It sure feels like something like that. I'll mention it to my doctors on my next visit to see what they may have to say about it.
I get a lot of email from folks asking questions about whether or not the dry mouth goes away, and taste comes back, etc. I am happy to report that at four years, about the only complaints I have are the continuing dry mouth (just need to keep water handy), and this new spasm kind of thing going on lately. I just hope that isn't still related to high blood pressure (what with project demands lately), because I am already on hypertension medication now! Bah number 2.
As I hit the four year mark, and have my scheduled six month checkup in September, I plan to write a little more. So, stay tuned . . .
1/5/2002 - The year 2002! Happy New Year! It's hard to believe how fast time is passing. I am entering this year with very mixed feelings. Lately, I have been thinking that most people who have been diagnosed with cancer, treated, and survived for five years, would not be sitting around writing about how they feel about it. Thus, my quandary. Here I sit. All broken hearted, paid a ... wait a minute! That's not what I wanted to say. Seriously, 2002 marks my fifth year of survival. And, I am thinking if there are no problems this year, I am officially cured in the eyes of the American Cancer Society. Of course, that status doesn't mean a survivor will just miraculously hit the five year mark, and poof! - all history and memory of cancer and treatment gone! Nope (if it were only that easy!).
But, I am finding that after four years (which I celebrated at the end of August, 2001), having the doctor tell me I am doing fine, I am still wrestling with a feeling that I ought to be moving on (which is one reason I haven't been posting a lot of updates - the other reason being, I really don't have any "news" to impart!). The other side of the coin is, I still get a lot of email from folks who stumble onto my site because they, or someone they care for, have been told the three awful life changing words... "You have cancer." That is a very powerful impetus to continue to provide a source of encouragement for those might benefit from it!
So, physically I am doing pretty well. No recurrences. Minimal complaints. Still dealing with the same side effects that will be with me for the rest of my life:
|
- Dry Mouth, especially in the winter - humidifier helps a lot, and
something handy to quench my thirst. For some reason, I have gotten
on a hot chocolate with marshmallows kick. - Sore/achy and somewhat saggy left shoulder (from the surgery) - Limited range of motion for left shoulder, but not serious enough to be prohibitive for most things I do. - Long time to eat a meal: chew, chew, chew... think about it - gulp, sip - repeat until done. Am usually last one at the table at home, or last one to finish if out with colleagues or friends/family. They are often sitting patiently waiting saying, "Oh no, take your time. I'm in no hurry!" - (Gross Alert): Sinus drainage - thick and yucky that slowly runs in the back of my nose/throat. My wife just doesn't understand that the snorting and hocking I do to try and break this stuff free, is not intentional to embarrass her! And the only way to get rid of it, is to spit it out. Period. That can be a tricky thing to do discreetly! - Taste seems to be a moving target. It is strange how the sensitivity changes, even over the period of a week. For the most part, food tastes good, however, and that is all that really matters. I can eat about anything, although I had some Szechwan chicken this week that was almost too hot to eat (and I don't order it hot like pre-cancer). - Swallowing can be tricky. If I am not careful, even a tiny little half tablet of an aspirin can hang up "on it's way down." A swish of water, or bite of food will easily move it on through, but, anything dry (no matter how small) will get caught. Pills, crackers, cookies, chips, bread, etc. I can chew on it all day, and somehow my body knows it can't swallow that darn bite of food without some liquid. It's strange. - Although my teeth are holding up OK (no cavities last dentist visit), the dentist is telling me that I am getting some very strange, very fine, cracks in my teeth. No problems yet, but we are in the "keep an eye on it" phase. I am sure I can thank the radiation for this... |
The new things that have been hovering on the brink of becoming issues, are not so much physical, but emotional/psychological. Part of this probably stems from stress at work, and the long hours that I have been stupidly working this past summer. But, I have had some really strange "come to terms" dialogs with myself lately. Sort of like, post traumatic stress syndrome, I suppose. It's hard to describe. It's almost like I never really allowed myself to resolve the fact that I had cancer. I always focused on treating it, beating it, staying positive, and being thankful that I am still here. And all of those things, along with heartfelt prayer, helped me to make it this far.
I think what <I> am trying to explain, was best explained by a breast cancer survivor, in a Wellness Community group meeting I attended one night in 1999. The structure of those meetings allowed whoever felt they had an issue, to face that issue. And in the process of sharing it with the others in the group, gain from their support and helpful comments (often finding others were experiencing or feeling the same thing!). This particular night, "Karen" (name changed to protect the innocent) announced she had something on her mind; thought for a minute or two - hedging, no doubt. But, even with a mixed sex group, she slowly vocalized an issue that was weighing heavily on her mind, and obviously very difficult to express. She had had a mastectomy as part of her treatment for breast cancer. When diagnosed, she just WANTED IT OFF! NOW!. She wanted nothing else. Just to get rid of the cancer. And I can relate to that feeling, just as I know you can, if you are/were a patient. In her intense focus of ridding her body of the cancer that was invading it, she never had time to truly reflect on what was happening to her. The way she termed it, she "never had a chance to mourn the loss of her breast." It sounds odd perhaps, but stop and think about it. For a woman, that would be a huge part of her identity, femininity, and being, that was just chopped off, and thrown in the biohazard can. That was how she saw it too. A cold, and heartless act, that was just routine for a doctor who did it every day. But, a life changing event for one woman, who can never look at herself the same again, or feel complete again. What a terrible thing to come to terms with AFTER the fact. Sure, she got rid of the cancer, but along with it went part of her own self image. And that can never be returned.
I relate to this story more now, than I did when she told it. Of course, I understood precisely her dilemma at the time, and offered encouragement as best I could. I remember fumbling around for something supportive to offer, and only being able to come up with my own comparison of losing my "symmetry." And feeling bad that I can't easily cover mine up. Of course that wasn't a good thing to say, but, I did feel that way. I know when I look in the mirror and see the drooping shoulder, I try to straighten it up. I try to wriggle my shoulders around, and twist and shift my neck to find a position where I don't look like a scoop has been taken out of my left neck. And am always a little indignant that I can't find one. Then, I try to console myself by closing my internal dialogue conversation with, "Hey stupid, at least you are still alive!" But sometimes, even with that thankful knowledge, I feel a little bitterness seep in there. Intellectually, I realize this is normal. We all have to find ways to come to terms with changes in our lives. Sometimes, it isn't until much later in life. And sometimes those that are lucky enough to be able to do it, can put things in proper perspective right off the bat, and move on. I guess, I am somewhere in between. At the end of the day, I am usually very happy to be alive, and be here with my family.
I could go on for a while rambling, but won't. The last thing I want to say is, and it's more of an observation, I have been thinking about the 9-11 attacks, and the similarity of terrorism to cancer. As a cancer survivor, I am always looking over my shoulder wondering if it might come back... a recurrence. A key element in terrorism. As a cancer survivor, I have memories of not knowing if I was going to live to see my daughter's next birthday. I am sure those survivors of the terrorist attacks had those exact same feelings, only more immediate! As a cancer survivor, my outlook has changed to allow me to see just how fortunate I am. I am sure we ALL have thought about this since 9-11. As cancer is battled world-wide, small successes, and even false alarms, are reported. Same holds true for the hunt of sources of terrorism around the world. By the same token, we all rejoice when a breakthrough in the fight for a cancer cure is announced. The civilized world is eager for solid news that any sources of terrorism are found and dismantled. Whether it's cancer, or terrorism, life goes on. We see people trying to move ahead with their lives after 9-11. We also see people trying their best to put their lives together after a cancer diagnosis. Let's all pray, and work, to make 2002 a successful year regardless of what the different definitions of "success" might be. Our future is determined by our decisions . . .
9/8/02 - FIVE YEARS! On August 29. 2002 I celebrated 5 years of cancer survival. I cannot express the unique emotions that go along with this. I doubt anyone could understand it, unless if at one point your life you were told you may not be around in five years. And you lived to see it. Yet another unique aspect of life with cancer. I realize I haven't written frequently over the past couple of years, but I really haven't had a lot to share - other than "life goes on..." Since I last added anything to this part of the site, life has pretty much been "day-to-day." By that I mean, I have been dealing with the side effects of radiation (dry mouth, some difficulty swallowing , slow eating), and the physical appearance issues (which my wife says are more of an issue with me, than anyone else). Also, part of the day-to-day, is job stress and frustration (which I swore I'd never let be an issue for me again). I have been wanting to find a way to retire so bad, I can taste it - despite not having much saliva! Regardless of how bad the job scene gets, I do maintain the realization in the back of my mind, that no matter how bad it gets, I always have the option of doing something else. There are ALWAYS options.
So, physical life is not so bad. I can deal with the cancer treatment side effects. I've been doing it for 5 years now. They don't change much at this point, but I am within about 5 pounds of my original pre-diagnosis weight. Hanging tough at about 166 lbs. Pre-cancer was 173. I can eat anything I want to. Chinese, Mexican, Italian, Indian, hey, wait a minute. This sounds like I am a cannibal or something. Hehe. What I am trying to say is, spicy foods are great. I don't drink much alcohol, but a pina coloda every now and then tastes wonderful. Especially with this recent summer heat! At work I keep a cup of ice handy at all times. I just let it melt, and sip at it until I need a refill. That takes care of the dry mouth for the most part. I do find that if I am speaking for an extended length of time (teleconferences, training, etc.), then I have to stop and sip water very frequently. My mouth gets really parched. Strange thing - recently, I was responsible for training our entire facility (~165 employees) on some software. THAT was interesting. Definitely had to keep some water handy for that. And, projecting my voice is tricky - it gets raspy if I force it too much. I've never really liked doing stuff like that (training sessions). And, since having half my neck shaved off, I do feel self-conscious about my appearance. I feel like people might be staring, and if they don't know me, or what I have gone through, then they are probably wondering just what the heck is up with this guy's lack of symmetry. Again - my wife says I make a bigger deal out of this than anyone else. May be true. We are all adults after all... right? Sheesh. That doesn't make it any easier, to be honest. Bottom line though, life is good. I still have my teeth. One cavity over the past 5 years (although I read that over the long term, I might expect to lose some teeth). One interesting thing that may be a result of the radiation to my thyroid... despite the summer heat in the mid nineties, I don't seem to be uncomfortable. My wife can be burning up and miserable, but I am feeling great, Consequently, when she cranks up the A/C here at home, I am freezing. Or, I can leave work to go out for lunch, and actually feel good sitting in the car with the windows up after freezing in the air conditioned office all morning. Yup, thyroid might be going out on me. TSH and T4 have been OK, though. Just have to keep an eye on everything, I guess.
That was the physical aspect... but, what about the emotional/psychological aspect of life at five years? Well, for me, it IS a milestone. I am thankful to God, and my family and friends who have been so supportive over these past five years. I mean that from the bottom of my heart. My musician friends - so close to my heart. Work colleagues who have been so supportive. And of course, my family! But, I doubt I'd be here if it weren't for the grace of God. So, all these important pieces of life go together to make my five year survival so special. Emotionally, it could be similar to the post traumatic stress syndrome experienced by the returning war veterans. I know I made a reference to this elsewhere on my site, but I think it applies here as well. I think back to all those people who have written to me to tell me about their diagnoses, and prognoses. And it could be the person writing who was the patient, or it could be a loved one or friend. But, not every one of them has made it. Thank God the majority have though. And that is what I have to focus on. But, my mind can't help but wander occasionally - to those brave people who had lives and hopes and dreams, that have gone unfulfilled. I think of the people who were in my Wellness Community support group for two years. The majority of those wonderful people didn't make it. I think of their lives. Their families. The things they loved and places they wanted to travel. They were real people. And I had the honor of sharing some of the most intimate thoughts, fears and moments of their lives. I think this is what the war heroes who survive feel too. It's just that cancer is a different type of war. So, I am in no way trying to compare myself with a war hero, but, emotionally, I look back and think about those people whose lives I've crossed paths with. There's not much I can really do about it, but I do ask myself, why is it that I survived against the poor odds?? I am not supposed to be here, "statistically."
OK - I do get a bit thoughtful about all this at times. Sorry. But, that is just the way it goes for me, I guess. It's my way of keeping it all in perspective. I don't wake up in a sweat in the middle of the night or anything (quite the opposite - I'm usually freezing!). But, life after cancer - five years of life after cancer - has left me marveling over the small things in life. I do enjoy watching sunsets, sunrises, animals that don't know I'm enjoying watching them, rainstorms, or smelling flowers, and contemplating the "grandness" of it all. And kids! They are amazing! This world is so full of wondrous things, we could spend a thousand lifetimes discovering new things. So, life a day at a time is fine with me. I am thankful, and at bedtime say a little prayer with my daughter to share that thanks. And it feels good doing it. I guess that is what it's all about... feeling good about what you are doing, and the life you have. Oddly enough, at the five year point, for me, cancer has actually helped me to reach a higher place in many ways. Sure, if I had a choice of never having had cancer, or having gone through all this, I'd take door number 1. But, for whatever reason, my destiny was to travel this road. So, I will continue to try to make the best of it.
5/2/2003 - Time for an update. Skimming over my last update (9/8/02), of over 6 months ago, I realize that some things have been developing in a very predictable manner. I noted how I seemed to possibly be feeling the effects of diminished thyroid gland functioning. Well, that has now developed into "an issue." It all began with my annual physical at work, back in March. The blood work came back with a high TSH (11.5). This is about twice as high as it is supposed to be. I watch this value closely because it is an indicator of how well my thyroid is functioning. It basically says, the pituitary gland is hollering at the thyroid gland to make more hormone. But, the thyroid gland is saying, "I'm working as hard as I can!" So, the bottom line is hypothyroidism.
When I received my radiation treatment (many paragraphs ago), I knew the possibility would exist that I might eventually run into problems with my thyroid. I had the blood work retested 6 weeks after the first test just to make sure it wasn't a fluke. It wasn't. Results were the same. It all makes sense, unfortunately. The symptoms of hypothyroidism match closely how I have been feeling the past 6 months (as I even noted back in 9/02). Lots of fatigue. Gaining some weight. Feeling cold. Memory giving me fits (part of that I attributed to getting older, but I think some could be related to this problem).
So, just this week, I started on .05 mg of synthroid to supplement my ailing thyroid's production woes. This dosage was prescribed by my family doctor, rather than my surgeon. My surgeon (who gave me a thumbs up checkup two weeks ago) said he typically starts patients out at either .07 or .1). So, we'll see where this ends up leveling out. It will probably take a few months to find out. All in all, this not earth shattering. But, it is aggravating. Just another reminder, and just another pill I have to take daily. Ugh
The other thing that showed up on the blood work was high liver enzymes. Not sure what the cause could be for that, but with my "history" of cancer (more aggravation), my doctor wanted to take no chances, so we ordered up an abdominal CT scan. Results are not in yet. But, I will not be a happy camper if it's a "here we go again" scenario! More on that later, if it becomes an issue.
Since I did just have a five and a half year checkup with my surgeon and radiation oncologist, I (was) feeling pretty upbeat about everything. In fact, I made the decision to move checkup visits out to annual visits. If you have been reading this "medical BLOG," you know it started out with monthly checkup visits, then worked its way up to this six month schedule. So, now - annual. This took a leap of faith, and believe it or not, I equate it somewhat to a baby letting go of the edge of the couch when learning to walk. But, I figure I have spent the last five and a half years trying to put this cancer business behind me as much as I can. (Of course, once bitten by the cancer dragon, you never fully live life without the stinker breathing over your shoulder). So, I think it's a good move. For the most part (until this thyroid and liver enzymes business came up), life is very good. In fact, maybe starting on synthroid will be just the ticket to actually feeling a lot better about things. Having more energy sounds like a good thing. My surgeon told me that the medication might make me "hyper" when I asked what side effects there might be. I'll bet my wife will just love that... hehe. Boing... zing... bounce...
5/24/2003 - Since the post on 5/2 quite a bit has happened. On that date, I was looking ahead to getting a CT scan of my abdomen for the high liver enzymes showing up in recent blood work. Well, I scheduled the CT scan, and went in a few days later to the same hospital, same radiation dept. and even the same same room, as I had my initial CT done back in 1997! The one that ended up being a cancer diagnosis. Talk about deja vu. This scan was done "with contrast," to help identify any potential problem areas in the event hyperdense hepatic veins could show up (which could lead to a false positive indication of a mass). Long story made short, the results came back showing a 3 cm "spot" on the frontal lobe of my liver. Sigh. In a rather urgent sounding conversation with my doctor, he told me we need to get a biopsy of that "spot" done as quickly as possible. So - my mind started reeling - the old ticker tape started running again. In typical human fashion, I started running the possible scenarios through my mind. Immediately, thinking the worst - I figured, same hospital, same CT room, yet another 3 cm spot - only this time on my liver. Yeah - I got problems. I wondered if it could be a metastasis from my original cancer. Not likely. I did some looking around for "liver cancer," and other search terms, and found out that most liver cancers are metastases from other primary sites. It seems rare to have a primary cancer in the liver. So, then I started wondering if I might have another cancer primary somewhere else (colon is a popular primary site for liver mets - and my father died of colon cancer...). Point is, my mind was going all over the place projecting all kinds of possibilities. Surgery? Radiation? Chemo this time? Sure, probably would need it. Survival likelihood? Had no idea. Oh boy, I need to get that biopsy done, and quick. I need to know what is going on in there! And get moving on fixing it.
on 5/7, I went in for what is called a CT guided thin needle biopsy. Jewish Hospital, Cincinnati, Ohio (just happened to be across the street from my doctor). Talk about nervous. My wife went in with me, because the docs told me I wouldn't be able to drive after "the procedure." Total time expected for prep, "the procedure" and recovery, ~ 4 hrs. Whew. Not looking forward to this. Mostly, it's the unknown, and my overactive imagination subjecting me to speculative scenarios that are probably unlikely, but very scary. Sitting in the waiting area, I looked around at the other patients, all sitting there with dejected, scared looks on their faces. Quietly nervous. Everyone alone with their thoughts and fears. An older black man, wondering whether or not his life is about to change. An aging woman who was well dressed, and had on very precise makeup. Had a rather deep hack of a cough. I wondered whether or not she was a lifetime smoker. And if it was finally catching up with her - and if she was wondering why she ever took up smoking. And there was a mother there with her mother, and a teenage daughter. Ah ha - it wasn't the grandmother's appointment, it was the mom's appointment. She seemed rather light hearted about the waiting process. The teenager just wanted money for a bags of chips. But, grandma was kind of somber. Perhaps she knew a little more about where this could all lead than the mom did... All observation and speculation. I knew none of these people.
I rambled on with my internal dialog. Wondering what the situations were for these folks, who like me, had no idea what these tests would mean for their future. Could be good. Could be bad. I wish I wouldn't be so invasive of their lives, though, because it really is none of my business. And my wife says (paraphrased), "Why do you wonder about people like that? You don't know anything about why they are here." But, I do wonder. Perhaps in some strange way, wondering about their situation makes my situation seem more manageable. I feel for them. And I "people watch" at the malls too. Curiosity I guess. And just an example of what goes through one's mind. Or, my mind at least...
Prior to the biopsy, I had to get some blood drawn to test for clotting properties, etc. Off to "the lab." It was freezing in that room!! And my failing thyroid only added to the discomfort. The woman who took my blood must have popped something in my arm, because a huge bruise appeared the next day.
Well, my name was finally called, and I said farewell to my wife (like I am walking The Green Mile or something). Went back with the nurse to get prepped for the biopsy. They had me lie down on the CT scan bench. (Another freezing room!! What is it with hospitals and arctic air?!). Well, who should come out but the radiation technician I had for my original CT scan back in 1997! Oh boy, is this some kind of omen? I said, "I remember you!" I told him I had a CT done in 1997, and he was the one who did it. And it turned out to be cancer. I also told him that I didn't want a repeat of that this time. As it turned out, he had been working there for 15 yrs. So, he has seen a lot of people come and go through that department. As the technicians busied themselves, I lay there looking at the ceiling wondering why they didn't put posters up there like they do in dentist's offices for kids. I guess us adults don't need distractions... Finally, the doctor who was going to perform "the procedure" came in. Dr. Martinique. Young fellow (by my standards anyway, probably about 40). Calm and at ease with the situation. Done this many times before. They did a couple of scans to identify the exact location of the "spot." He commented that it was a strange looking mass. Uh oh. It's a mass now. He told me it was on the frontal lobe right beneath my xiphoid. So, he would have to try to work the needle through the xiphoid and down about 6 inches. Sheesh.
The first thing to happen was to administer a local anesthetic. Lidocaine. My old friend from the radiation days. This was also the low-fat 2% solution. So, an impressive needle was presented, and he said, "This might hurt a little." I have to tell you, it was a really strange experience to lie there and watch this happening to myself. One shot to numb the surface area. Another shot went deeper to numb the interior. And yet another shot even deeper to (I suppose) numb the liver area. Well, it worked. Everything was numb. Dr. M inserted a sheath into my chest that would "guide" the biopsy needle to its target. THIS was weird. Watching him insert this guide into my chest, and actually feeling it scrape around deep inside - but, with no pain. I told myself, I know this doesn't feel good, but, the lidocaine was doing its job. Once the guide was in place, he was going to place a 20 gauge needle into it, and take a sample of this spot on my liver. He said three samples would be needed. Again - shades of the past... Dr. M demonstrated what would happen with the needle taking the biopsies. I would hear a quick "pop." And it would be done. Well, in went the needle, and again - it was very strange watching it disappear down into my chest about 6 inches. I could feel the guide and needle moving around - but, there was no pain. A good thing. Dr. M took the biopsy. And two more. He said the lab would take a quick look at the blood to see if we got good samples. When the tech came back, Dr. M said they only saw liver cells, and white blood cells. So, just like 5 and a half years ago, I said, want a fourth sample to be sure? He took another sample. And we called it a day. The whole procedure took about 20 minutes. It was a weird experience, but didn't really hurt. I told Dr. M that I would like to get the results as quickly as possible. He said it usually takes 3-5 working days. This was a Wednesday, so I might not hear anything until next Monday or Tuesday! I reiterated my desire to get the results back ASAP. I indicated that tomorrow would be good. He just smiled.
They brought in a gurney and I scooted myself onto it. They rolled me up to the 5th floor where I would recover for a couple hours. The idea is to watch blood pressure and observe for internal bleeding. As I lay there, my chest started to feel a little sore. Dr. M said after the lidocaine wore off, I might feel like someone punched me in the chest. I began to think he might be right. But, the soreness never really became "bad." In fact, I was hungry (no food since the day before). My wife and I met my mother at a local Ruby Tuesday's for a late afternoon meal. It was good. We talked, and I described my "ordeal." But, I was nervous. What were these test results going to show? What was I in for? These, and many more questions were going through my mind as I quietly and calmly sat and ate. Funny how we mask our fears.
Come Thursday, I was feeling fine (aside from the angst I was feeling about what the results could be), and the big 2" square of gauze they put on my chest covered a little dot of a spot where the needle went in. It was really nothing. Thursday night I took my daughter to soccer practice. When we returned home, my wife greeted us in the garage. The doctor called... My heart rate immediately went up. Dr. M said 3-5 working days. It had only been one. Of course, if the news were going to be bad, they would want to contact me as soon as possible to start aggressive treatment. Maybe chemo first. To shrink the "mass." Followed by surgery. Yeah. That way they could get it all... But, what if they didn't get it all? Uhhh.... hold on a second. These thoughts went through my mind in a matter of milliseconds... Racing with the possibilities. Then, I noticed that my wife was smiling. And she had a thumb up. WHAT? Good news? Yesss!!!!!!
Turns out, my spot, my "mass," is what is called a hemangioma. The key word was benign. Basically, it is a birthmark on my liver! Who ever heard of such a thing?! Scared me silly. All this worry and wild imagination. And I have a birthmark on my liver. I looked it up later, and found it is not all that uncommon. But, it seems to happen mostly in women. Here is a link to some info on it:
My doctor stills wants to try to identify the source of the "out-of-whack" liver enzymes. But, at least the worst case scenario has been put to rest. Well, I guess I got my request answered. Results in a day. Now I can enjoy the weekend with an incredible sense of relief and answered prayer. It is indeed good to be alive...
Who knows what can happen in life? More later....
8/4/2003 - Well, this month I will celebrate 6 years of cancer
survivorship! It's been a long hard road in many ways. And, time
has passed both slowly and quickly. It is really quite strange how in
this past year I have had more "issues" than in the previous
five. Yet, those previous five (especially the first couple) were
really a struggle... trying to get the upper hand on things like side
effects of treatments, and recovery itself! Yet, this year I have had
spots on my liver, hypothyroidism due to a failing thyroid gland (and waaay
back at the beginning of this chronicle, I said it could happen), and
recently acid reflux has become an unpredictable annoyance that has resulted
in an upper GI, and a prescription for omeprazole to reduce my stomach's
production of acid. But, with God's help, I have made it thus far
relatively unscathed. I feel good, and am in fairly good shape (I have
been running at times with my daughter as part of her soccer fitness
program). If anything, I might be a couple pounds overweight now,
although still 9 lbs shy of my pre-cancer weight of 173. Indeed - life
is good.
One thing I wanted to share with those who have been following this
chronicle of events (or BLOG, as they are now being popularized on the web),
is something that came out of my recent upper GI that was done to check out
my acid reflux. I did a barium swallow upper GI at the end of July,
and was able to get the films and convert them into digital photos.
There were a couple that showed very clearly exactly what we survivors of
cancer and radiation treatments complain about when we have difficulty
swallowing. The medical term is dysphasia. It is caused by scar
tissue. Most often due to radiation to the esophagus. I had an
esophageal block when I was treated with radiation. The block was a
lead strip that was placed in front of my esophagus and blocked the
radiation. Of course, this is something that has to be carefully
considered because you could also be blocking radiation to cancer cells,
which would defeat the purpose of the treatments! As I have mentioned
before, the radiation left me with a huge savings on razor blades, since I
no longer can grow a beard, other than my goatee. But, the esophageal
block left me with a 1/4" wide strip of beard running directly down the
middle of my neck, from the center of my chin to about my Adam's
apple. Strange to have to shave that! My point with this is,
when doing the barium swallow, it was very clear that there was an area on
my esophagus that got nuked. And these two
pictures show just what is going on when we talk about the side effect
of dysphasia - or difficulty swallowing. This may be one of the only
places on the net where you can see this in context with head and neck
cancer. So, don't say I didn't "stick my neck out" for you!
Something else I was able to do this summer, was participate in a local
(Cincinnati) Relay for Life support walk for The American Cancer
Society. It was fund raiser that raised $54,000 for cancer research
and educational programs. I walked with two other cancer survivors
from where I work. That's me on the
left waving... with the ever-present water bottle as we walked the
"Survivor's Lap." I was interviewed for a quote in our
company newsletter, and the one thing that came to mind was how when we
walked the survivor's lap I imagined it feeling quite a bit like a war
veteran must feel walking in a Memorial Day parade. Hundreds of people
cheering you on, and clapping. It's a battle of a different kind, and
deadly in it's own right. There were luminaries all the way around the
stadium commemorating those who have survived, and those who did not.
I put one up for my father, who lost his battle. Let's hope that
continued support will eventually lead to some medical
breakthroughs.
All things aside, I feel very fortunate to be here, and very happy each
morning when I wake up for another day. My job is frustrating (in fact
the nurse at work says my acid reflux might be due to stress!). But,
the statistics say the majority of us who work aren't happy with our
jobs. So, I don't feel like an exception in that respect. God
provides for us, and if we give Him just a little bit of thanks, things seem
to work out.
| -
Physical and biological techniques for radiation therapy - New developments in chemotherapy - Swallowing disorders (a good amount of time devoted to this area) - Acupuncture (this was very interesting, as presented by world renowned expert, Richard Niemtzow) - Head and neck reconstruction (minimally invasive techniques - some awesome examples of how normal we can look after some incredibly difficult surgery!) - Professional storyteller, Eva Grayzel who is a survivor, shared her tongue cancer experience and lessons learned through the process - We had a lawyer discussing Medicare and the difficulties of getting post treatment coverage - The history of SPOHNC was discussed, and how the organization has grown over the past 15 years - Mind / Body medicine, including a couple of exercises/techniques that were shared with the audience - Question and answer panels of both professionals and survivors |
> One of the most moving things of the weekend was sitting in a group
of a couple hundred people... just like me. Who knew what it was like
to experience this disease. And the side effects of its
treatment. The food was great - the special needs of the people eating
it were considered, so there were many nice dishes with sauces, that were
easy to eat and swallow. And very tasty! To sit with a table of
people who also had to be careful about chewing and swallowing, and not feel
rushed, was such a change! I am usually hurrying to try to finish my
meal. It has gotten to the point where I'll often leave some food on
my plate, just to spare people the wait for me to finish. I am sure
one of the reasons people don't always like to go out to eat with me is the
time factor... it's easier to "pick something up" and bring it
home. Then they can eat it and leave me sitting at the table.
I'm used to it. But, for one weekend in my life, I could take my
time. And even taking my time, I was still not the last person
finished! That has to be a first! These seemingly small joys
were actually very meaningful to me. There was discussion of the
success of the acupuncture technique of Dr. Niemtzow. One fellow had
the acupuncture, and said it was amazing. For the first time he had
spit! It probably seems really stupid and insignificant to anyone who
doesn't know what we are talking about here. But, to be able to lick a
stamp, or envelope, can be a major accomplishment! I'll bet you know
exactly what I mean.
> During the breaks, there were vendors present who had information,
samples, and more for the unique needs of oral and head and neck cancer
patients. I won't list them all, but there was information about the
Lance Armstrong Foundation, drug companies like Introgen, Align Pharma and
Amgen. There were books available on cancer topics, such as helping
children cope with the diagnoses of a parent (how often is that considered
during the treatment plan?). All in all, a very informative setup,
rivaling the best corporate conferences I've been to!.
One of the highlights for me was seeing old acquaintances, and being able to
meet some people for the first time, whom I've only known
electronically. THAT was great. It was nice meeting some of the
SPOHNC chapter facilitators. Great people, who are doing a wonderful
service to the newly diagnosed cancer patient, and survivor community.
Yes, this weekend was truly special. And one I won't soon
forget! My hat is off to Nancy Leupold for making it all
happen.
So, I think its about time to drop back into obscurity for a while. I
will update again, so check back later!
- Barry
As always, if you seen any broken links, please drop me a line so I can fix them. It always bugs me when I visit a site and see something interesting, only to find the link doesn't work. The internet is a constantly changing place, so it happens.
God bless, be well . . .
The best to you and yours . . .
