There are some positives...

In these days of gloom and doom, I have found at least one somewhat positive aspect. Along with the bald head and thinning eyebrows, though the mustache remains I might add, I don't have the 'old man' hair popping up in and around my ears. So the upper lip remains covered, and my hearing has improved...

Had the fun yesterday of having a chest CT scan and a brain MRI - back to back. Actually it was pretty handy that way. Should hear the CT results tomorrow when I show up for my 3rd, and last for the time being, round of chemo. And still need to make an appointment with the radiation doc for next week. At long last the results are trickling in.

Still the battle of cold and tired. You would think I would have gotten used to it by now. And the weather certainly has not been helping. Will be going through a quick cold snap. Time for me to hibernate yet again.

The boys are working to rework the kitchen pantry and cabinets. Just trying to make the food more accessible and a bit more organized. A work in progress, so to speak. Not sure when it will be finished.

Adios for now. More coming I am sure.

Some days you are the windshield

but lately, I have been the bug.

It has been some time since I have written, though very little, really, has been going on. I will try and recap so bear with me.

Had my second round of chemo the 18th to the 20th without a seizure. BUT, with similar results - tired and cold, and some would say irritable. Cannot argue with that.

That weekend Colin and Mandy, and kids came for a short visit. As well, Heidi's sister Kris stopped in. She was on her "way" to Chicago - from Raleigh - for a conference. Had I not been Mr. Cranky it would have better, but it was still a treat to have everyone visit. Just the wrong weekend for me.

So, pretty much been sound asleep since then. I wake up tired, generally with a headache, and tire myself by going downstairs to have some coffee. It sucks. Anything requiring more than 5 minutes or so of attention is pretty difficult. Not for lack of desire - it's a body thing. It doesn't want to do it.

Met with the neurologist this afternoon - finally. I think he is the only guy in town. It has been since the 2nd when I called for an appointment. Given some of my smart ass comments, and his regular battery of tests, at this moment I am doing okay. He scheduled an EEG on the 20th - I am guessing for a benchmark of my brain's activity. Yes folks, he insists I really do have a brain. I sometimes wonder.

And next week, joy of all joys, my 3rd round of chemo. Also will be getting another CT scan to see if anything is working. I agree with Heidi. If I knew for a fact that any of this was working, I would probably feel better. In the interim I can only hope for the best and be positive. Not always an easy task.

Forgot to mention the seborrhea - brown skin patches on my head. Typical I am told of the radiation treatment. Disconcerting at first until I found out it was "OK".

I really do not have much else to share at the moment. I have said it before - I've been told the worse I feel, the better things are going. Treatment wise. If that is the case, I should be cured here pretty soon. And just about everyone I see tells me I don't look sick. I appreciate hearing that, and really hope they are correct. I would not wish this on my worst enemy. It is grueling, tedious, frustrating...

Till we meet again....

Daily Survival Kit

I just wanted to throw this up for grins and giggles. And just leave it for now. More later. Radiation Doc this morning. Oh, it is snowing and really quiet and peaceful. Actually better than rain in my mind.

The formatting screwed up; sorry bout that.

****************************************
Daily Survival Kit for Serious Illness
BY
Thomas L. McDermitt
A long time cancer patient and skeptic

(You don't have to agree with all of this all of the time. But fit generally speak to you, try to read all or parts of it every day, or have it read to you. Part of the help is in the doing, regardless of your attitude or emotions on that day. On some level the help is gradual and often not evident.)

1. Today I am going to try to live through this day only, and not dwell on or attempt to solve all my
problems at once; just focus on the piece that is today. I can do something for several hours that
would be difficult to even think about continuing for several months.

2. Just for today, I am willing to accept the possibility that there is a purpose to this suffering; that it can be a source of meaning and growth for myself and others, though I may not always recognize the ways. And it seems possible that this suffering will not have been in vain, because of what may be some kind of existence beyond.

3. Just for today, let me remind myself that I am basically a worthwhile person, worth loving, despite my faults and limits. I deserve the efforts of others to help me through my illness.

4. Just for today, I want to be aware that it is all right to want too much from others at times. illness brings out and intensifies the small child in all of us. And if I feel hurt when those who care for me cannot be there, it may help to remember that they have needs, frailties, and limitations of their own. A lack of response does not mean that they are personally rejecting me.

5. Today I may feel the need to complain a great deal; I may have little tolerance; I may cry; I may
scream. That does not mean that I am less courageous or strong. All are ways of expressing anger over this mess, of rightly mourning my losses. Endurance itself is courage.

6. It is my life at stake now. So maybe today I can allow myself to be a little less concerned about
the reactions or impressions of others. Maybe I can allow myself to feel a little less guilty or bad
about what I did not accomplish or give. Perhaps today I can be a little more gentle toward
myself

7. Surviving this is all so difficult. At times it seems impossible - that I have had enough. Down
the line I will know if and when I have had enough, when I cannot push the limits any further. I
will have the right to choose to stop, without feeling that I am "giving up." But today I think I
can deal with illness. Sorrow runs very deep, but I think I can rise again.

8. Just for today, maybe I can give healing "the benefit of the doubt." The drugs are powerful; the
natural healing capacity of my body is powerful. And who knows, perhaps there is healing power
in my will to struggle, and in the collective love and will of others.

9. Just for today, perhaps I can take heart that we are all connected. And I may still have some
things lefi to contribute to the family of man; some light to add to the light. Even now my
endurance (however imperfect) is a gift, an inspiration for others in their struggles.

10. It seems reasonable that there is a season for everything, k d a time for every purpose. Pain,
weakness and exhaustion may distort my senses and spirit. Today, however, I can at least find
some hope in nature's way, if not in some master plan. The chances are fairy good, and it seems
worthwhile to hope that I will have some cycle of wellness yet.


Copyright 1989 Thomas L. McDermitt

Crazy Monkeys

I think that best describes last Friday's incident. One minute I am sitting in a chair - the next, I am looking through slits in my eyes trying to say anything, and flailing on the floor. Quite the scare for everyone. Grand Mal Seizure was the diagnosis in ER. EKG and portable CAT scan showed nothing out of the ordinary.

So now I do not know if it was the radiation or the chemo. Missed my third IV, so need to talk with the Doc this morning the see what the game plan is. And to make an appointment with a neurologist. The radiation Doc is tomorrow. It would be nice to know what might have triggered it. But for sure it appears I will be taking Dilantin for quite some time.

Slept all day yesterday. A welcome relief from the last few weeks. And then another 6 or so last night. Just really tired and cold for the most part.

Rather than drag this on, I am going to close for now, and try and write again later. Notice I said try.

New Meds

... some bad stuff too. Had two seizures this morning. 911. Completely stable and home by 3:00 pm. First seizure I've ever had and hopefully the last. They perscribed Dilantin to get them under control.

So..... that means I missed Chemo this morning. At the Oncologist neither of the primary, and more experienced doctors, were there. I guess we will just have to wait until Monday. I've got plenty of nothing on my calendar anyway.

I will get another post going for later this evening.

Thank you all for your support

Day Two

So today wasn't too bad. Slept again - about an hour. Which is good since I got no sleep Wednesday night. It seems we 'over dosed' on the Decadron - the anti-inflammatory that was being used to lessen the swelling around the brain lesions. I had been taking two 4mg per day. The idea was to stop taking it to see if the radiation was successful. Well - part of yesterday's cocktail was a 20mg dose. There was no way I was going to sleep.

Additionally I was given Emend - for the prevention of nausea and vomiting. And it works.

Not much else to pass on. Oh wait - had the hot water heater replaced today. Not very good timing.

If you are dead, serenity is academic.

Stress may not kill you, but it doesn't help. I am pretty stressed at the moment.

Found the pictures from Tibet and have fixed the link. Or click here.  It was fun to review that journey.

So I just need to keep my spirits up and that really helps.

Enough for now.

Crazy Neurons

In an act of daring, I grew a moustache when I went college in 1971. I have never shaved it off. We need a pool.  Heidi said 17 days. That's how long after starting radiation that I went bald. Care to offer your guess?

Working on the Tibet pictures. Should have that with the next update.

D-Day

So the day was pretty easy. Slept most of the time in the chair. The steroids tend to prevent much any chance of sleeping. And I need to stop taking those to see if there is any change in the brain lesions, and if the headaches are under control. I think I might need them.

Today Cisplatin and tomorrow Etoposide - here is information regarding  them.

Will check in tomorrow for an update. And hopefully find those Tibet pictures.

By any other name

Had a different title in mind - once. This just will ramble and provide some links in case you are interested. Have had a better week resting and bulking up for the chemo. Still battling some pain, but overall not all that bad following the radiation.

Still very anxious to see the results of my first treatment. Will be in the chair for 6 hours today. It is only in the last 30 minutes that the drug 'cocktail' is injected. The need the body as liquid as possible to assist with getting the dose everywhere fast, I guess. Books - iPod and snacks.

So, who gets lung cancer? You might be surprised.

There is always hope.

Tim Ritchie once called me an iconoclast. He just couldn't understand me I don't think. And there is curmudgeon. And I know there are other names that just don't come to mind. And I never denied that my personality is sometimes strange. I have always been crazy. I just never knew how crazy. These might give a clue. What's been seen cannot be unseen. Blasphemy.

And then there is always Tibet. A beautiful land I had the honor to visit. Excellent companions I might add. Not sure if anyone has seen some of these pictures, which I am still digging for. Will do that later - after chemo, so just check back.

All for now.

Family Album

I've been rolling through my hard drive, and these pictures have appeared. Enjoy.

Gone Shootin - No Dogs Allowed

Had a really good day. See what we were up to in the hills. Real tired now. But it is a good tired.

Observations - some cute

Just checking in, and getting some pictures going here. Guess I can use my night time energy burst to do something.

Gaining weight in prep for Chemo, and just starting to get some energy. 

And in many ways, I am getting back to where I should have been, living wise, a long time ago. There is a much different perspective.

And I think I have had another first. Sunburned eardrums - I am serious. Pretty obnoxious to say the least. Sarah picked me another 'hat'. Soft as bunny fur and warm. Especially with the new haircut. Forecast is for low 50's by the weekend.

Pack Rat

It starts with baseball cards, and then it never seems to end. And unfortunately, it never does end. Been doing computers so long, any one need a copy of Windows 95 [full legit out of the box] let me know cause I seem to have it all. Plus just about every driver disk, manual and component you might ever want - or need. Let me know, it is yours. Pure 19th century technology.

Really sucks

I suppose what really bites is the control loss. Though really, how much control do we have?And discovering those 'limits' can be drawn out as mine was. Life's choices, of which I've hidden from many, are simply that. A decision - with no guarantee as to the outcome. This world has changed so significantly in my short years. And I suppose living in the past has such great appeal. Such simpler and safer times.

Moustache

This will be the first occasion for anyone to see me less the stash. Grew it my first year in college and never looked back.

Chemo Doc

So, it starts next Wednesday. First round is a three day shot. Six hours on Wednesday, then and hour or so the next two days. Finishing on my Birthday, the 27th. Stars crossing out there somewhere. Then, depending on results and tolerance and all that neat stuff, would do the second round in three weeks. Cisplatin and Etoposide. And I guess this is where I HAVE to end the smoking. 

Commercial Interruption

Just a pause for the cause. Fine barber services, lousy atmosphere. 

Rx Mixup

I guess you'd call it a prescription faux pax. I had failed to renew the steroid medicine, and was subsequently under for the steroids, which brought back the headaches. Got that straight, and have been back on track for a few days. Don't use the pain killers anymore - or at least haven't lately.

Last week of radio therapy - get to keep the mask. Then meet again next week with Dr Shiff, the Chemo doc. I am guessing that this first meeting will be to discuss the treatment options. At least I am ready to see what's next.

Had a soiree last Saturday and it was fun. I want to thank everyone who showed. It was heart warming for everyone's concern and best wishes. A real neat morale booster. It kept me going for a few days. The following Monday, all was fine. Tuesday brought the ravages of Radio into full play. Extreme fatigue and overall pains. Moving about - 5 mph. The the shower - what's all that hair from? 

Yep - finally got me. And real cold.

But, I got the mask. Will try to get some snapshots up later today.

Met with the Radio doc after my last treatment on Friday. The immediate plan is to return in 2 weeks for a general check. Then within 6 weeks another MRI to check the lesions and size and condition. Maybe more from there.

I will find out Tuesday what Chemo brings on. Not sure if they will give me any time off for good behavior with Radio. I need to bulk up a bit more and get some strength back. Exercise, I know, as I can. It will be good for me.

Kinda of a lazy snowy day. Will spend my time just putzing around. Do something, forget and move on to something else. Just try to keep a reasonable sleeping pattern. That is a real hard one too.

Wheels on the Bus go Round and Round

So today started the treatment. Just a bit afraid what will happen, and how it will go. It has been the anxiousness I suppose that has given me the wobbly weekend I just had. Fear is still fear no matter the basis.

Colin and family came over this past weekend - sort of. They drove over Saturday morning, and spent the afternoon Sunday heading back home. Nothing real unusual this time of year. It was a real treat to have them here with no other distractions. Gavin gave me a hat to help me keep warm during the treatment period. One of those British racing hats - you all know them. It's now my Cancer Cap.

Wednesday 1/28/2009

So Monday was fine, and Tuesday sucked. Slept all day through after a '15' minute session. Woke around 7pm but could not just come to. Downstairs for some quiet time and some more sleep. Finally woke again about 8am, but still not quite there.

Got sort of going, and headed for another blast from the past. It was a quick and painless process. Then I asked the tech about the PET report. Afterwards a Dr. Hummer spoke with me about them. Seems that there could be a spread to the liver. Not sure if she was in safe mode or what.

Doing pretty well right now. I really don't have much else to pass along right now. Will have to write more later. A lot of thoughts rolling through right now.

Ya da, Ya da - will interpret the images, write a report, and deliver the results to your doctor. This process usually takes 2 to 3 days.

Here is a link you should be able to follow for information on one of the next steps in the process  - a PET scan. That is set for Thursday. This is designed to show the 'flow' if you will of any further metastasis. And the process it might be traveling? That is about my best understanding.

Then radiation therapy to start on Monday. Again, much hustle with little bustle. But I will keep the moaning to myself. Still on the positive I would like to think.

FROM THE EYES TO THE THIGHS

So today's scan was done to hopefully pin down what is moving where and how and shit like that. Had gone into the Radiation office quickly earlier to have final mask fitting for the process to start next Monday.

We'd met with Dr. Shiff on Wednesday, and his offer was to return in about 2 weeks. See how the Radio is doing, and try to chart a Chemo plan. I am guessing surgery is pretty much out. Instead, I will for sure quit smoking - ha - and do what I can to at least stop any new cancer growth.

Still not getting the warm and fuzzies about the full process, but I keep an open mind. Of course no one commits to a finality, or single absolute phrase that will make it all come to end. Still - my problem and I keep working at it.

Laying low this weekend to try and prep for the treatment. Colin had mentioned coming over for the day, but we will have to see how the weather goes. Of course there is the rest of life to contend with.

More to follow.

Radiation Plan, hurry up and wait...

Met with the radiation doctor yesterday. Given the quantity and extent of the metastasis in my head, she is suggesting a 'full head' treatment for the lesions in the brain. This it appears would be followed up by chemo for the gerkhen hanging in my right lung. It's been a pretty short time line to compare, but she feels that a blanket dose would best get what appears to be the most developing of the problems. Oxygen rate appears good. Just need to stuff some weight on - lost 25 pounds getting here.

The Radiation doc said she will consult the Chemo Doc, today or tomorrow, and see what happens from there. I have been trying to coordinate and make sure this fast tracks. The most recent MRI was in December, and they don't have a clue what has spread where, or how quickly. Details to follow I guess. Hurry up and wait. Chemo appointment tomorrow.

Radiation treatment should start next Monday, and runs 5 days a week for the next 3 weeks. 

I won't, or maybe cannot, get over the speed with which this all is happening. It has been very sudden, and very final as well. And of course there is the natural denial that I some days adopt. I have not really gotten a complete understanding of all that is to come. I have been much more selfish [believe it or not] and but am trying to maintain at least a civil attitude, when sometimes I just want to say *F* it and move to something else. I guess I am bored already. And with 'nothing' happening per se physically [ie, no treatment reaction] - I "feel fine". That is the struggle right now. What seems to be the problem?

I know something will be happening soon, and for us that should be a good beginning. And I guess for the day, that is what I hope for.

I feel vulnerable baring my soul in this fashion. I am not a people person some say, and I do tend to bottle my feelings. Just the way it is. I hesitate to ask for help. I need things done my way. I try not to criticize, but that does not always work. I try to be patient. I try and do the next right thing. I just want to be a decent person. Something of that has slipped away, and I need to be cautious in my actions and words. Especially now.

I will attempt to be less maudlin in future posts, but it will slip in anyway I am sure. The meds keep me a little on edge, and this is, I guess, a time for at some reflection. I am not religious, but the thoughts and prayers are always welcome. After all of the shit I have done in my life, I still know there is some purpose in my being alive. And I guess that is my hope as well. And my higher power is working with me. Sometimes not sure in what way. I just keep looking for the clues.

I know I have been just a 'tad' crazier this past year plus, and I am guessing maybe this will explain some of my recent behavior. I have not been my normal self for some time, and I have let this become a big part of the problem. I just want to hide, and wake up later with all this resolved. Sounds good. That won't happen. 

OK, off the wagon for now. Keep in touch.

Day One

Will give this a shot and see how it works.

Visited with another pulmonary doctor on Friday. Primary Lung Cancer. Stage IV. Not real good news.

Will be visiting the Radiation Doc on Monday, and the Chemo Doc on Wednesday and get more of a game plan going. No idea how the body will respond to either - just have to hold out hope and see what develops.

I gather this removes some anxiety - I know better what is going on. But, still need to plot a future course.