Continuing to travel the road to recovery. The last few days have been good, though nothing remarkable in terms of gains. Probably the best thing today was for the first time, I drank a whole bottle of Boost, and I can say that without having to put quotations around the word "drank." Sadly, there was no taste, but it was tolerable enough that I will now try to drink at least one or more cans of food a day. My meeting with my oncologist focused on swallowing recovery. He indicated it is time to start rehabing my swallowing, starting with thicker liquids like Boost...water and solid food will come a little later. I am anxious to recover some taste buds, but that is too individual a process for him to have any predictions. I have cuts on my tongue which make liquids (especially anything acidic) painful; the pain of swallowing is there, but that is more manageable. I have a product called "Magic Mouthwash" which numbs my tongue and mouth; I take that a few minutes before drinking, and I don't feel a thing.
I continue to sleep through the night, thank God. Last evening, Kathy and I drove over for a short visit with friend Cindy...it was nice to get out and nice to see Cindy (a mutual friend who introduced us 16 years ago.) Getting out of the house for something other than appointments in Omaha is therapeutic, though I worry that I'll have some symptom issue as soon as I am out the door.
I have clients scheduled beginning next Tuesday; I am really counting on continuing to make some gains between now and then; I am planning to see 3 clients each day from Tuesday to Friday. That is a very big deal to me...I pray for the endurance and strength to speak without my mouth totally drying out...right now, I would last about 30 minutes I think. I'll have to practice therapeutic nodding...
For you readers outside of the "good life" we live in Nebraska, we in eastern Nebraska have been spared an early winter...there are already parts of western Nebraska that have received 30+ inches of snow in October and this already exceeds their annual average TOTAL snowfall for the winter...we've had a lot of rain in Lincoln and Omaha, but oh, how thankful I am we've been spared the snow.
I must practice enduring the slow but steady road...I wake up in hopes that there will be huge progress overnight; it's not always that great...then I think back to how sick I was, and I realize I have already come a long way on this road. Some of what I went through already seems like a nightmare that I couldn't possibly have managed.
I never nap during the day, but I start to fade around 8:00PM. Tomorrow, I hope to help Kathy a bit raking leaves...raking is one of the yard chores I sort of enjoy...I love being able to really see the yard again appear from under it's blanket of leaves. I know, I know, go easy and don't overdo it...
GRATITUDE
Friday, October 30, 2009
Tuesday, October 27, 2009
checking in - Oh, blessed relief
I have to hand it to the oncologists...they were spot on with predicting that the "turnaround" would really begin at the end of the second week of recovery or the beginning of the third. Tomorrow ends week two of recovery, and each of the last three days I have felt noticeably better. I feel more energy, less pain, and several mouth and throat symptoms are improving. I slept through the night last night, with only two brief periods of waking of about 15 minutes each. My mood is improving as well, and today, I caught myself singing along with the radio as I drove to the store. I haven't felt like singing in a long long time...
I feel such relief...and I am so thankful for it. Thank you God. Thank you all for praying for me through this. Thank you doctors who had a hand in this.
I have quoted this verse before in some post, but I've been thinking about "the waiting" part of this ordeal, and how that has vacillated...
"THEY THAT WAIT UPON THE LORD SHALL RENEW THEIR STRENGTH..." ISAIAH 40:31
I have waited, I have waited, I have waited...and I wait... through this ordeal... but the waiting vacillates in such extreme ways...
1. A good deal of my waiting has been adrift in a sea of discouragement and fear...that is an awful way to wait, and it is so far from waiting "on the Lord." I know there are people who endure extreme pain and never take their eyes off Him... I so admire those people... unfortunately, that was not my experience, but perhaps I am growing in this area. I pray that I would keep growing here.
2. Waiting with some sense of hopeful expectancy and trust. That's what I feel today...Is it just that I am feeling better and therefore, it is easier to have a renewed sense of hope, or is something else happening on a spiritual level? I don't know for sure. There is such a difference in these two states of waiting. I suppose it's never black or white, and waiting itself falls along a continuum of waiting "in the Spirit" and waiting "in the flesh."
Now I have another wait beginning...about a three month wait for a PT scan that will see if all the cancer has been killed off. I don't think there is much I can do at this point to impact the outcome, in terms of my choices, but I know it would be wise to strive for the #2 kind of waiting. Also, I can't afford to allow myself to dwell too much on the future, rather, I need to continue learning to fully appreciate each day and each blessing as it comes. I wont dwell on that scan too much here, for it will make everyone including myself sick of hearing about it.
I also wait for the day when I can again eat and drink the way we are intended to.
I saw a good friend yesterday, who I hadn't seen in 8 months, as he was working in Chicago...seeing him was a breath of fresh air. A visit last evening from my stepdaughter Amy and grandkids Tanner, Rilie, Avery and Ashton topped off a lovely day for me. They are all such immense blessings.
I write with hope and thankfulness for the day. I feel more alive, more energy, more reason, more sanity, with a tincture of joy on the horizon.
I feel such relief...and I am so thankful for it. Thank you God. Thank you all for praying for me through this. Thank you doctors who had a hand in this.
I have quoted this verse before in some post, but I've been thinking about "the waiting" part of this ordeal, and how that has vacillated...
"THEY THAT WAIT UPON THE LORD SHALL RENEW THEIR STRENGTH..." ISAIAH 40:31
I have waited, I have waited, I have waited...and I wait... through this ordeal... but the waiting vacillates in such extreme ways...
1. A good deal of my waiting has been adrift in a sea of discouragement and fear...that is an awful way to wait, and it is so far from waiting "on the Lord." I know there are people who endure extreme pain and never take their eyes off Him... I so admire those people... unfortunately, that was not my experience, but perhaps I am growing in this area. I pray that I would keep growing here.
2. Waiting with some sense of hopeful expectancy and trust. That's what I feel today...Is it just that I am feeling better and therefore, it is easier to have a renewed sense of hope, or is something else happening on a spiritual level? I don't know for sure. There is such a difference in these two states of waiting. I suppose it's never black or white, and waiting itself falls along a continuum of waiting "in the Spirit" and waiting "in the flesh."
Now I have another wait beginning...about a three month wait for a PT scan that will see if all the cancer has been killed off. I don't think there is much I can do at this point to impact the outcome, in terms of my choices, but I know it would be wise to strive for the #2 kind of waiting. Also, I can't afford to allow myself to dwell too much on the future, rather, I need to continue learning to fully appreciate each day and each blessing as it comes. I wont dwell on that scan too much here, for it will make everyone including myself sick of hearing about it.
I also wait for the day when I can again eat and drink the way we are intended to.
I saw a good friend yesterday, who I hadn't seen in 8 months, as he was working in Chicago...seeing him was a breath of fresh air. A visit last evening from my stepdaughter Amy and grandkids Tanner, Rilie, Avery and Ashton topped off a lovely day for me. They are all such immense blessings.
I write with hope and thankfulness for the day. I feel more alive, more energy, more reason, more sanity, with a tincture of joy on the horizon.
Saturday, October 24, 2009
checking in - such a good day...
...all things considered, today was by far my strongest and most symptom free day. I slept well last night, which I am finding, has more to do with the outcome of the day ahead than I had ever realized. I felt more energy getting out of bed than I have had in at least a month. I was feeling so good, I tried a few sips of milk, but I am not ready for that yet. A little disappointing. (The other disappointment of the day was the performance of the Nebraska Cornhuskers, but that's a whole other issue.) After the game, I drove to the library, stopped at my office to check mail, and drove home. I then took a walk around the block, another first...it's been probably around two months since I've taken a walk...it felt really good; it was a cool, misty, autumn day...the leaves have never looked more beautiful. It's around 6PM and I have not had a physical let-down yet for the day. Overall, I feel qualitatively better today than I have up to this point. So, I rejoice and give thanks for this day. My mood has improved considerably.
Friday, October 23, 2009
checking in- in the right direction, at a snail's pace
The last two days have been generally marked by slight overall improvement, but with ups and downs. It is still a half a week early for "noticeable" gains, and so I try not to let a few good hours color my expectations...invariably, part of the day is marked by feeling weak, sick, and miserable. I hate this word, but the "mucositis" is the most difficult symptom to live with right now, and it is what keeps me up a good part of the night, wearing the carpet out back and forth from the bed to the bathroom. I feel an almost continual need to...spit...and the relief only lasts a minute or two...then it's back again. TMI...sorry. But today, for the first time, I have been able to swallow with only moderate, not excrutiating pain. The swelling must be going down in my throat...that is a good sign. I was able to put a few ice chips in my mouth for the first time. Not that the terrible taste didn't still permeate that, but I was able to tolerate it. Who knows, food and drink may be on the horizon. I am also using less narcotic and a smaller patch for the last few days, and so I have felt more alert.
The sitting at home all day is really wearing on me... if i felt the energy to "do" something...anything...it wouldn't be so bad...but that energy is just not back yet. So I feel bored, lonely, isolated and the "D" word. Our cat Simcha sleeps all day under the bed...it is not as good a life as I once thought. She comes out around 4PM and starts paying attention to me for her 5:12 feeding. (Yes, 7:00AM, 5:12PM, and 9:12PM) She has an amazing internal clock. When Kathy comes home, both Simcha and I feel much better.
I want so much to get to the point where I am writing about the great day I had and the food I ate, and the enjoyment of returning to work...for half-days at the start...I know those days will arrive, like I know a snail eventually gets where it's going.
The sitting at home all day is really wearing on me... if i felt the energy to "do" something...anything...it wouldn't be so bad...but that energy is just not back yet. So I feel bored, lonely, isolated and the "D" word. Our cat Simcha sleeps all day under the bed...it is not as good a life as I once thought. She comes out around 4PM and starts paying attention to me for her 5:12 feeding. (Yes, 7:00AM, 5:12PM, and 9:12PM) She has an amazing internal clock. When Kathy comes home, both Simcha and I feel much better.
I want so much to get to the point where I am writing about the great day I had and the food I ate, and the enjoyment of returning to work...for half-days at the start...I know those days will arrive, like I know a snail eventually gets where it's going.
Wednesday, October 21, 2009
checking in - feelin' better
Today makes one week since my completion of radiation...I met with my oncologist and he again told me that this past week and this week in front of me were typically experienced as badly as the prior two weeks. He said the two weeks following this coming week (i.e. the first two weeks in November), should be marked by dramatic improvements. In spite of that prognostication, I slept better last night, and today I felt quite a bit better and stronger than I had been feeling the last few. I did some walking around in Omaha with Kathy, as we had several hours between appointments, and I know I would not have been able to do that last week. So I will take it as a good day, and be thankful for it. I'm not going to make predictions again about what tomorrow might bring, as I have learned more than once that that is setting myself up. But I am feeling pretty good right now. I have cut back on the narcotic patch and, again, the oncologist was surprised to see that I was not having more difficulty with pain control. Anyway, a good day, and a better mood. Today I daydreamed about how good a sweet juicy orange tastes...oh, that sounds like heaven.
I can't hardly believe I could someday get to enjoy that again.
This is a marathon and not a sprint. Having never run a marathon, (nor a sprint for that matter), it's all new to me.
I can't hardly believe I could someday get to enjoy that again.
This is a marathon and not a sprint. Having never run a marathon, (nor a sprint for that matter), it's all new to me.
Tuesday, October 20, 2009
checking in - still bouncing along the bottom
Well, perhaps I let a better day deceive me again...the oncologist did tell me the first week or two after radiation would be as rough or rougher than the last week or two of radiation...and today is rough. I did not sleep well, I am having mouth and throat and saliva issues, and feeling quite weak again. Tomorrow completes my first week post radiation.
I find I am fighting as much emotionally and spiritually as physically...I lie around during the day without the energy to get out of bed, and feel lonely, depressed and distant from God. I begin to wonder if all the things I wrote in the blog I just wrote because they sounded good...did I really feel that connected to God?...why don't I have any desire to pray or meditate or read the Bible or read anything at all for that matter? Will this trial ever end? Intellectually, I can be rational with myself and tell myself that in the next week or two, I will begin to improve and everything wont seem as dark as it does right now. But, that is just my intellect, and to be honest, things seem dark right now.
I did have a good few hours yesterday...it was gloriously beautiful outside, and I sat in the backyard for a half hour or so and enjoyed the sun and the colorful leaves and birds and squirrels at work. Be thankful, for small things.
I find I am fighting as much emotionally and spiritually as physically...I lie around during the day without the energy to get out of bed, and feel lonely, depressed and distant from God. I begin to wonder if all the things I wrote in the blog I just wrote because they sounded good...did I really feel that connected to God?...why don't I have any desire to pray or meditate or read the Bible or read anything at all for that matter? Will this trial ever end? Intellectually, I can be rational with myself and tell myself that in the next week or two, I will begin to improve and everything wont seem as dark as it does right now. But, that is just my intellect, and to be honest, things seem dark right now.
I did have a good few hours yesterday...it was gloriously beautiful outside, and I sat in the backyard for a half hour or so and enjoyed the sun and the colorful leaves and birds and squirrels at work. Be thankful, for small things.
Sunday, October 18, 2009
checking in - bottoming out and heading up
I must say, the last two days were like a two day nightmare. Yesterday, I felt more dead (how does that feel?... It feels just like I felt yesterday! ) than alive, and all systems were haywire. Terrible; everything that has been bad all happening at once. So, the good side to that was that I am considering that to me my "bottomed out" day. I slept periodically during the night, but nonetheless, slept. When I got out of bed, I felt better than yesterday, and I have a little more energy, less symptoms, and am more "with it." And why should not every day be a little better from here on out? I have no known reason to think things should get worse again...and since my body is not being exposed to chemo or radiation, why should it get worse? I am pleading with God that this be the case. Along with feeling so bad, I really felt depressed all day yesterday, like...feelings of hopelessness and helplessness type depressed... But, again, today, my spirits are lifted. I can walk from room to room without feeling like I am either going to pass out or be sick. So, when I say I have more energy, I can walk around the house (indoors) and feel no worse upon my arrival in one room than I did my departure from another.
I am feeling so grateful for these little gains today, and I am feeling like I can again look forward to each day henceforth as a day of increased recovery. I hope my renewed optimism is not unrealistic, and still I can't imagine yet the day coming when I will be able to drink or eat again, but it's coming. I remember not that long ago writing that each day does not predict the next, but that was in the midst of treatment...now, in the midst of healing, I am letting my hopes rest that the days will progressively get better, or at least not get worse again. Oh, may this be the case.
I couldn't face the blog yesterday, but was anxious to report today that I am feeling better. Thank you all for your encouragement and empathy. I'm feeling better today!
I am feeling so grateful for these little gains today, and I am feeling like I can again look forward to each day henceforth as a day of increased recovery. I hope my renewed optimism is not unrealistic, and still I can't imagine yet the day coming when I will be able to drink or eat again, but it's coming. I remember not that long ago writing that each day does not predict the next, but that was in the midst of treatment...now, in the midst of healing, I am letting my hopes rest that the days will progressively get better, or at least not get worse again. Oh, may this be the case.
I couldn't face the blog yesterday, but was anxious to report today that I am feeling better. Thank you all for your encouragement and empathy. I'm feeling better today!
Friday, October 16, 2009
checking in - again, reality sets in
So as to not get too cocky about being "finished," with treatment, yesterday I was handed my worst day, physically, yet, and today has been rough. Yesterday, I could not keep any cans of liquid food down, and got sick a number of times during the day. Today is only a little better. I am coughing up bad stuff...and very weak. The oncologist warned me that this would be the worst week, even after treatment subsides, and I guess he was telling the truth. I just need for time to pass so that my body gets the message that the radiation has stopped...and the burning has stopped. Then, healing can begin; for now, I am feeling quite weak.
I woke up at 2:30AM and have been up since. Since I feel so poorly, that makes for a very long and slow day. I am still very happy about being done with radiation, but I guess, at some level, I wanted to believe that things would start getting better right away, and that is just not the case.
In a few days...I can't wait...the pain and nausea will subside; I just need to be patient with this suffering. I still have a voice, weak as it is, and I still have a life. Friday night...hmmn... I am ready for that to mean something again. I am on a hydrocodone "patch" that has me groggy, though, it's hard to tell how much of that grogginess is just lack of sleep, and how much is the drugs.
we are all disappointed...we are all waiting for this to get better...we are all tired of waiting.
I woke up at 2:30AM and have been up since. Since I feel so poorly, that makes for a very long and slow day. I am still very happy about being done with radiation, but I guess, at some level, I wanted to believe that things would start getting better right away, and that is just not the case.
In a few days...I can't wait...the pain and nausea will subside; I just need to be patient with this suffering. I still have a voice, weak as it is, and I still have a life. Friday night...hmmn... I am ready for that to mean something again. I am on a hydrocodone "patch" that has me groggy, though, it's hard to tell how much of that grogginess is just lack of sleep, and how much is the drugs.
we are all disappointed...we are all waiting for this to get better...we are all tired of waiting.
Wednesday, October 14, 2009
checking in - a window full of acorns and pine cones
RADIATION DAY 35 OF 35!!!!!!!!!!!!!!!!!!!!!! PRAISE GOD!!!
YES, YES, I AM DONE WITH THAT INSANE TREATMENT.
Here are 4 pine cones, representing 4 days of radiation & chemo together
and 31 acorns, representing 31 days of radiation alone. 35 days that felt like 35 lifetimes.
What I was sure would never come to an end has just come to an end!
I am VERY happy about that (yes, you CAN be happy and miserable.)
I am miserable in my body...and the oncologist told me to expect no meaningful change for at least a week, and not much noticeable change during the second week, but week 3 of healing I should NOTICE a difference, and then make some rapid gains from then on out until the healing is complete. He told me it is not unrealistic to expect a total "cure," but the final PET scan is not done until January, and at that point, we will know for sure.
I am feeling such relief...now, I just need to keep everything going (meds, fluids, nutrition, rest). He wants me to start sipping on Boost...he said to take an extra dose of Hydrocodone,and then wait a half hour, and take a sip or two...maybe I will do that tomorrow...today, I am going to NOT do anything that causes more pain.
Thanks to all of you hanging in there with me. I will keep checking in, and, God willing, the posts will not be so miserable. There have been days that I hoped no one would read the blog because there were some really discouraging days when I just didn't feel like getting out of bed...but I wanted to be honest with what I was going through, and for the most part, I think I've done a reasonably decent job at that. There have been moments of tremendous gratitude and love as well, and there, too, I think I've done reasonably well reflecting that in what I have written. Now, it's time to spend the rest of the day relaxing and reminding myself that I don't have to go back to Omaha in the morning!
I was asked if I want to take home my radiation "Mask"...Kathy reminded me this is a "G" rated blog...so I can not say the exact words I used, but the answer roughly translated to..."no, thank you, I would like never to see that piece of equipment again."
YES, YES, I AM DONE WITH THAT INSANE TREATMENT.
Here are 4 pine cones, representing 4 days of radiation & chemo together
and 31 acorns, representing 31 days of radiation alone. 35 days that felt like 35 lifetimes.
What I was sure would never come to an end has just come to an end!
I am VERY happy about that (yes, you CAN be happy and miserable.)
I am miserable in my body...and the oncologist told me to expect no meaningful change for at least a week, and not much noticeable change during the second week, but week 3 of healing I should NOTICE a difference, and then make some rapid gains from then on out until the healing is complete. He told me it is not unrealistic to expect a total "cure," but the final PET scan is not done until January, and at that point, we will know for sure.
I am feeling such relief...now, I just need to keep everything going (meds, fluids, nutrition, rest). He wants me to start sipping on Boost...he said to take an extra dose of Hydrocodone,and then wait a half hour, and take a sip or two...maybe I will do that tomorrow...today, I am going to NOT do anything that causes more pain.
Thanks to all of you hanging in there with me. I will keep checking in, and, God willing, the posts will not be so miserable. There have been days that I hoped no one would read the blog because there were some really discouraging days when I just didn't feel like getting out of bed...but I wanted to be honest with what I was going through, and for the most part, I think I've done a reasonably decent job at that. There have been moments of tremendous gratitude and love as well, and there, too, I think I've done reasonably well reflecting that in what I have written. Now, it's time to spend the rest of the day relaxing and reminding myself that I don't have to go back to Omaha in the morning!
I was asked if I want to take home my radiation "Mask"...Kathy reminded me this is a "G" rated blog...so I can not say the exact words I used, but the answer roughly translated to..."no, thank you, I would like never to see that piece of equipment again."
Monday, October 12, 2009
the deepest thing - my song in the night
Here is the verse that has gotten me through this past seven weeks...at the core...the love and support of family and friends has been the deeper thing...and the knowledge of Him and His love and support has been the deepest thing. My strength and my heart...I love you all...and I love Him, my "heavenly Friend."
"...I have learned the secret of being well-fed and of going hungry, of having plenty and being in need. I can do all things through Him that strengthens me." Phil 4:13
Here is the song that will get me through the next 48 hours...read along, as the lyrics are provided. If you happen to be up around 3AM, listen carefully...if you hear it on the wind...I will be singing in my heart...
"...I have learned the secret of being well-fed and of going hungry, of having plenty and being in need. I can do all things through Him that strengthens me." Phil 4:13
Here is the song that will get me through the next 48 hours...read along, as the lyrics are provided. If you happen to be up around 3AM, listen carefully...if you hear it on the wind...I will be singing in my heart...
checking in- getting closer
radiation day 33 of 35
So day 33 didn't start out so well; I "fed" myself a can of liquid food (Jevity...like Boost)) at 7:00AM, got sick at 7:30AM, and had to leave for Omaha at 7:50AM. I've described before the particular horror of getting sick these days, so it was a lousy way to start the day. I was in pain, and really bummed. I was actually quite worried about getting sick again whilst my face was entrapped in it's radiation mask. But I got through that, slept on the drive home, and am trying to keep myself medicated and under control.
I am so ready for the next two days to be over. There's not many numbers left to crunch...two...one...done! Then, I will plan on no improvement for 4 days (I just picked a number), then, I want, hope, pray, that my salivary glands get some kind of message that the war is over, and they can stop manufacturing whatever it is that has replaced saliva and is making me so sick.
I have nothing scheduled but rest and recovery until November. I am planning to start next week with a walk around the block and sort of try to begin building back some strength. I don't really know what to expect...I talk with my oncologist again on Wednesday after my last treatment. I don't really know much of anything...my life has slowly come to a full stop.
So...tonight and tomorrow during the middle of the night, when I am awake and anxious...here will be my song...no...no...not here...I will put in on another "deeper things" post by itself.
I can't hardly believe I am this close to finishing radiation.
So day 33 didn't start out so well; I "fed" myself a can of liquid food (Jevity...like Boost)) at 7:00AM, got sick at 7:30AM, and had to leave for Omaha at 7:50AM. I've described before the particular horror of getting sick these days, so it was a lousy way to start the day. I was in pain, and really bummed. I was actually quite worried about getting sick again whilst my face was entrapped in it's radiation mask. But I got through that, slept on the drive home, and am trying to keep myself medicated and under control.
I am so ready for the next two days to be over. There's not many numbers left to crunch...two...one...done! Then, I will plan on no improvement for 4 days (I just picked a number), then, I want, hope, pray, that my salivary glands get some kind of message that the war is over, and they can stop manufacturing whatever it is that has replaced saliva and is making me so sick.
I have nothing scheduled but rest and recovery until November. I am planning to start next week with a walk around the block and sort of try to begin building back some strength. I don't really know what to expect...I talk with my oncologist again on Wednesday after my last treatment. I don't really know much of anything...my life has slowly come to a full stop.
So...tonight and tomorrow during the middle of the night, when I am awake and anxious...here will be my song...no...no...not here...I will put in on another "deeper things" post by itself.
I can't hardly believe I am this close to finishing radiation.
Saturday, October 10, 2009
Deeper things - gratitude stew
My soul is satisfied as with a rich feast,
and my mouth praises you with joyful lips
when I think of you on my bed,
and meditate on you in the watches of the night;
for you have been my help,
and in the shadow of your wings I sing for joy.
My soul clings to you;
your right hand upholds me.
----- Psalm 63:5-8
I woke up today around 5:30...my first thought was...hey...I slept! I last remember reading around 11PM, and I didn’t remember waking up at all during the night, though that seems unlikely. I took a few hours to lie in bed before getting up at 8:00. I started thinking about, what else...food...but then my thoughts drifted toward things other than eating...I started thinking about God and all I am grateful to Him for. Having a few hours (often more) in bed to think over the course of each night has become a daily ritual. I think, pray, read, but mostly I just think. Since I wont be eating for awhile, I thought about creating a different sort of meal...I had this idea this morning that each day I have an opportunity to create a kind of soul-meal...completely unique, completely new... each day...a gratitude "stew" for the soul...adding ingredients throughout the day, letting it all sort of simmer and send up a beautiful aroma.
There was a time I would have thought getting up at 5:30AM on a Saturday morning was robbery...of sleep. Now, it felt like a gift...of sleep! Same event, different perspective.
I also woke up with minimal pain...add that right away to the stew, as it will only last a short while.
No trip to Omaha today...instead...I can open the window shade and watch the beautiful sight of the sunrise (somewhere under the clouds) on the season’s first October snow (an inch or so) fresh on the pine trees and fence posts. Right in you go, beautiful morning.
Today friends Jeff and Lina are getting married...actually, as I type this they likely just finished the ceremony and are now heading to the reception...I don't have it in me to make it ... but I am happy that Kathy is going...they are a great couple and they will have a great life together...all the best, friends!!! Somehow, you have found your way into the stew....I think the metaphor is starting to break down, now that people are floating amongst the veggies, snow, sunrise, and a good night sleep.
Here is a poem I love.. it captures the small things that (if we allow ourselves this vulnerability) daily, we can fall in love with.
Aimless Love
This morning as I walked along the lakeshore,
I fell in love with a wren
and later in the day with a mouse
the cat had dropped under the dining room table.
In the shadows of an autumn evening,
I fell for a seamstress
still at her machine in the tailor’s window,
and later for a bowl of broth,
steam rising like smoke from a naval battle.
This is the best kind of love, I thought,
without recompense, without gifts,
or unkind words, without suspicion,
or silence on the telephone.
The love of the chestnut,
the jazz cap and one hand on the wheel.
No lust, no slam of the door –
the love of the miniature orange tree,
the clean white shirt, the hot evening shower,
the highway that cuts across Florida.
No waiting, no huffiness, or rancor –
just a twinge every now and then
for the wren who had built her nest
on a low branch overhanging the water
and for the dead mouse,
still dressed in its light brown suit.
But my heart is always propped up
in a field on its tripod,
ready for the next arrow.
After I carried the mouse by the tail
to a pile of leaves in the woods,
I found myself standing at the bathroom sink
gazing down affectionately at the soap,
so patient and soluble,
so at home in its pale green soap dish.
I could feel myself falling again
as I felt its turning in my wet hands
and caught the scent of lavender and stone.
~ Billy Collins ~
and my mouth praises you with joyful lips
when I think of you on my bed,
and meditate on you in the watches of the night;
for you have been my help,
and in the shadow of your wings I sing for joy.
My soul clings to you;
your right hand upholds me.
----- Psalm 63:5-8
I woke up today around 5:30...my first thought was...hey...I slept! I last remember reading around 11PM, and I didn’t remember waking up at all during the night, though that seems unlikely. I took a few hours to lie in bed before getting up at 8:00. I started thinking about, what else...food...but then my thoughts drifted toward things other than eating...I started thinking about God and all I am grateful to Him for. Having a few hours (often more) in bed to think over the course of each night has become a daily ritual. I think, pray, read, but mostly I just think. Since I wont be eating for awhile, I thought about creating a different sort of meal...I had this idea this morning that each day I have an opportunity to create a kind of soul-meal...completely unique, completely new... each day...a gratitude "stew" for the soul...adding ingredients throughout the day, letting it all sort of simmer and send up a beautiful aroma.
There was a time I would have thought getting up at 5:30AM on a Saturday morning was robbery...of sleep. Now, it felt like a gift...of sleep! Same event, different perspective.
I also woke up with minimal pain...add that right away to the stew, as it will only last a short while.
No trip to Omaha today...instead...I can open the window shade and watch the beautiful sight of the sunrise (somewhere under the clouds) on the season’s first October snow (an inch or so) fresh on the pine trees and fence posts. Right in you go, beautiful morning.
Today friends Jeff and Lina are getting married...actually, as I type this they likely just finished the ceremony and are now heading to the reception...I don't have it in me to make it ... but I am happy that Kathy is going...they are a great couple and they will have a great life together...all the best, friends!!! Somehow, you have found your way into the stew....I think the metaphor is starting to break down, now that people are floating amongst the veggies, snow, sunrise, and a good night sleep.
Here is a poem I love.. it captures the small things that (if we allow ourselves this vulnerability) daily, we can fall in love with.
Aimless Love
This morning as I walked along the lakeshore,
I fell in love with a wren
and later in the day with a mouse
the cat had dropped under the dining room table.
In the shadows of an autumn evening,
I fell for a seamstress
still at her machine in the tailor’s window,
and later for a bowl of broth,
steam rising like smoke from a naval battle.
This is the best kind of love, I thought,
without recompense, without gifts,
or unkind words, without suspicion,
or silence on the telephone.
The love of the chestnut,
the jazz cap and one hand on the wheel.
No lust, no slam of the door –
the love of the miniature orange tree,
the clean white shirt, the hot evening shower,
the highway that cuts across Florida.
No waiting, no huffiness, or rancor –
just a twinge every now and then
for the wren who had built her nest
on a low branch overhanging the water
and for the dead mouse,
still dressed in its light brown suit.
But my heart is always propped up
in a field on its tripod,
ready for the next arrow.
After I carried the mouse by the tail
to a pile of leaves in the woods,
I found myself standing at the bathroom sink
gazing down affectionately at the soap,
so patient and soluble,
so at home in its pale green soap dish.
I could feel myself falling again
as I felt its turning in my wet hands
and caught the scent of lavender and stone.
~ Billy Collins ~
Friday, October 9, 2009
checking in - seeing some light
Radiation day 32 of 35
I am beginning to think I am going to get through this, and no matter how miserable I may feel, it is just today; the light looming ahead is huge. Actually, I think I am coping with the misery pretty well today. No trips to Omaha until Monday, and then, only three more days of radiation. Wow. I am trying to keep my meds ahead of the pain, and it's been a bit better in that regard.
It was a fun football game last evening (at least the fourth quarter) and the night before, a fun Nebraska volleyball game was televised. And we are in baseball playoff season...our team (the Cubs) will have to wait another year. We are going to root for the Twins. Of course, I am also coming to the realization that I probably will never play professional baseball. Actually, truth be told, my present illness is just an excuse...I probably wouldn't have made the pros even if I had stayed healthy...you don't see many 57 year old Rookies these days. But...I can still wonder...what if....
I remember playing softball on the street in front of my house growing up with some kids from the neighborhood: Arthur, Bob, Glenn, Jimmy, Ralph and myself. NO one had ever hit the ball over the top telephone wire straightaway center (which, by the way, straightaway center is about the extent of the field when you play on the street.) The street also was the entrance to the Wantagh Parkway, which took people to Jones Beach and the ocean....which meant about one pitch and then three cars passed before one could throw the next pitch, but we would play for hours. Well, this particular day, I was standing in the outfield, and Arthur finally did it...he connected like Mickey Mantle, and launched a high fly ball well over the top phone wire...which meant it carried on a fly into the woods next to the Parkway entrance...I ran into the woods with my back to Home Plate (a piece of cardboard) and with my glove extended out in front of me...(to keep from running into trees) I blindly ran to where I thought the ball would come down...and Voila...pure luck...the ball came down through the trees and landed in my glove as if it were done with magnets and special effects. I thought Arthur might come after me with the bat. But secretly, years later, I saw a tape of Willie Mays making the same catch, but he didn't have to deal with trees in the outfield. By then, though, I realized I was going to play second base on the Mets, so I wasn't all that excited. Of course, I never played Little League, or school sports, so my life as a Major League ballplayer was pure fantasy. Replaced a few years later, by my realization that I was going to be the next Bob Dylan. I didn't know how I would pull off two careers of such fame and notoriety, but...I could do concerts in the off season, and play for the Mets and record studio albums during the regular season.
When Bob Dylan became a Christian in late 80's or early 90's...I realized...after all these years, wouldn't you know it, he was trying to steal my life!!!
I am feeling grateful again, and marching...well, at least crawling...toward the finish line.
I am beginning to think I am going to get through this, and no matter how miserable I may feel, it is just today; the light looming ahead is huge. Actually, I think I am coping with the misery pretty well today. No trips to Omaha until Monday, and then, only three more days of radiation. Wow. I am trying to keep my meds ahead of the pain, and it's been a bit better in that regard.
It was a fun football game last evening (at least the fourth quarter) and the night before, a fun Nebraska volleyball game was televised. And we are in baseball playoff season...our team (the Cubs) will have to wait another year. We are going to root for the Twins. Of course, I am also coming to the realization that I probably will never play professional baseball. Actually, truth be told, my present illness is just an excuse...I probably wouldn't have made the pros even if I had stayed healthy...you don't see many 57 year old Rookies these days. But...I can still wonder...what if....
I remember playing softball on the street in front of my house growing up with some kids from the neighborhood: Arthur, Bob, Glenn, Jimmy, Ralph and myself. NO one had ever hit the ball over the top telephone wire straightaway center (which, by the way, straightaway center is about the extent of the field when you play on the street.) The street also was the entrance to the Wantagh Parkway, which took people to Jones Beach and the ocean....which meant about one pitch and then three cars passed before one could throw the next pitch, but we would play for hours. Well, this particular day, I was standing in the outfield, and Arthur finally did it...he connected like Mickey Mantle, and launched a high fly ball well over the top phone wire...which meant it carried on a fly into the woods next to the Parkway entrance...I ran into the woods with my back to Home Plate (a piece of cardboard) and with my glove extended out in front of me...(to keep from running into trees) I blindly ran to where I thought the ball would come down...and Voila...pure luck...the ball came down through the trees and landed in my glove as if it were done with magnets and special effects. I thought Arthur might come after me with the bat. But secretly, years later, I saw a tape of Willie Mays making the same catch, but he didn't have to deal with trees in the outfield. By then, though, I realized I was going to play second base on the Mets, so I wasn't all that excited. Of course, I never played Little League, or school sports, so my life as a Major League ballplayer was pure fantasy. Replaced a few years later, by my realization that I was going to be the next Bob Dylan. I didn't know how I would pull off two careers of such fame and notoriety, but...I could do concerts in the off season, and play for the Mets and record studio albums during the regular season.
When Bob Dylan became a Christian in late 80's or early 90's...I realized...after all these years, wouldn't you know it, he was trying to steal my life!!!
I am feeling grateful again, and marching...well, at least crawling...toward the finish line.
Thursday, October 8, 2009
checking in - you KNOW you're tired when...
Radiation day 31 of 35
...you fall asleep standing up while brushing your teeth.
Yes, a new lesson learned. The last pill I could take orally was Ambian...a sleeping pill. It was small, but swallowing it has become very painful, so I stopped taking it orally. We got a pill crusher and mixed it with a little water, and I shot it into my stomach. The lesson learned is that that needs to be the very last thing one does for the evening. I, on the other hand, decided to take the sleeping pill before brushing my teeth. I then went into our bathroom, and apparently (I have no recall), Kathy, who was also getting ready for bed, looked over at me and I was asleep with the toothbrush in my mouth, standing in front of the sink, drooling like a baby. I had no idea that one could actually fall asleep standing up, and pretty much stay asleep as I was helped into bed.
So, that about sums it up. Pain and fatigue. It will be a long weekend. But it will be the last weekend, on this side of radiation. Then, praise God, three more days next week and I move into the next phase of the journey. I don't have good days anymore, but occasionally, I have a good hour. And, every good hour means another hour less of this left. I don't think I have any good ideas anymore either, so these posts are becoming repetitive and boring. I feel like apologizing. I know that is silly.
I am really quite sick and fed up with all this, if you know what I mean. Enough is enough. Yes, I know, just a few more days. Self-pity is soaring today to hights of grandeur. I think it might be at record levels. Call Guiness. This may be my way into that book (I thought I might be able to set the record for eating the most Marshmallow Peeps in an hour, but this would be a sure thing.)
Nebraska football tonight...I'll watch and try to lose myself in the game. Sitting down.
...you fall asleep standing up while brushing your teeth.
Yes, a new lesson learned. The last pill I could take orally was Ambian...a sleeping pill. It was small, but swallowing it has become very painful, so I stopped taking it orally. We got a pill crusher and mixed it with a little water, and I shot it into my stomach. The lesson learned is that that needs to be the very last thing one does for the evening. I, on the other hand, decided to take the sleeping pill before brushing my teeth. I then went into our bathroom, and apparently (I have no recall), Kathy, who was also getting ready for bed, looked over at me and I was asleep with the toothbrush in my mouth, standing in front of the sink, drooling like a baby. I had no idea that one could actually fall asleep standing up, and pretty much stay asleep as I was helped into bed.
So, that about sums it up. Pain and fatigue. It will be a long weekend. But it will be the last weekend, on this side of radiation. Then, praise God, three more days next week and I move into the next phase of the journey. I don't have good days anymore, but occasionally, I have a good hour. And, every good hour means another hour less of this left. I don't think I have any good ideas anymore either, so these posts are becoming repetitive and boring. I feel like apologizing. I know that is silly.
I am really quite sick and fed up with all this, if you know what I mean. Enough is enough. Yes, I know, just a few more days. Self-pity is soaring today to hights of grandeur. I think it might be at record levels. Call Guiness. This may be my way into that book (I thought I might be able to set the record for eating the most Marshmallow Peeps in an hour, but this would be a sure thing.)
Nebraska football tonight...I'll watch and try to lose myself in the game. Sitting down.
Wednesday, October 7, 2009
checking in - more meds
radiation day 30 of 35
Finally, I can say...ONE MORE WEEK...then, though the burning will persist, no new damage will be inflicted, and healing will be a slow steady process. The oncologist upped all my meds, including adding a "patch" of narcotic, which will be upped to 2 or 3 patches worn simultaneously. Not to replace the hydrocodone, but to add to it. He also had several suggestions to make this week more bearable. It is a full time job just keeping all the meds straight and getting hydration accomplished. Kathy has written out a complete schedule.
I am fairly well miserable...again, today. The oncologist stated I am one step beyond the normal level of beaten up at this point, though, he said, that could be worse...two or three steps beyond, and they consider hospitalization. It looks like I will get through this without requiring that. I will take all the meds they want me to take; I am beyond protest, and I look forward to my next dose of hydrocodone like it's a banana split.
Good friendly comfort food list..any more? Looks like a lot of people pick ice cream. I'll stick with my bagel, or as Ann said, a piece of Pizza, and I agree... even bad Pizza beats about anything else.
Finally, I can say...ONE MORE WEEK...then, though the burning will persist, no new damage will be inflicted, and healing will be a slow steady process. The oncologist upped all my meds, including adding a "patch" of narcotic, which will be upped to 2 or 3 patches worn simultaneously. Not to replace the hydrocodone, but to add to it. He also had several suggestions to make this week more bearable. It is a full time job just keeping all the meds straight and getting hydration accomplished. Kathy has written out a complete schedule.
I am fairly well miserable...again, today. The oncologist stated I am one step beyond the normal level of beaten up at this point, though, he said, that could be worse...two or three steps beyond, and they consider hospitalization. It looks like I will get through this without requiring that. I will take all the meds they want me to take; I am beyond protest, and I look forward to my next dose of hydrocodone like it's a banana split.
Good friendly comfort food list..any more? Looks like a lot of people pick ice cream. I'll stick with my bagel, or as Ann said, a piece of Pizza, and I agree... even bad Pizza beats about anything else.
Monday, October 5, 2009
checking in - four hour rides
Radiation day 28 of 35
Seven more days of radiation...next Wednesday!
My days and nights are now being experienced in blocks of four hour roller coaster rides. I take hydrocodone, the next 3 hours are manageable, then I start feeling my throat and tongue pain, then the unbelievable dry mouth starts to bother me, then I wait till the 4 hours are up and get my next dose. Then I wait a few minutes, and start feeling better. I swallow as little as possible; and it is horribly painful when I do. I think I got the food talk out of my system yesterday, so I won't blather on that again, though I still would like to hear what people consider their best food friend. Just a short entry today.
Seven more days of radiation...next Wednesday!
My days and nights are now being experienced in blocks of four hour roller coaster rides. I take hydrocodone, the next 3 hours are manageable, then I start feeling my throat and tongue pain, then the unbelievable dry mouth starts to bother me, then I wait till the 4 hours are up and get my next dose. Then I wait a few minutes, and start feeling better. I swallow as little as possible; and it is horribly painful when I do. I think I got the food talk out of my system yesterday, so I won't blather on that again, though I still would like to hear what people consider their best food friend. Just a short entry today.
checking in - clarification
a brief post script to my sandwich post (Oct 3) ...though the TV show featured Katz's deli and the Stage Door deli...my personal favorite is the Carnegie Deli...here is the real deal...a Carnegie Deli sandwich... and it tastes as good as it looks...this one is a genuine Carnegie Deli corned beef and pastrami sandwich. (I think it's called the "Woody Allen" on the menu.) That, along with a Knish (with lots of mustard), a pickle, and a piece of New York cheesecake...and you will understand that New York is the birthplace and rightful home of all Delis ...(Not that I'm biased, you west coast readers!). A little pricey for a sandwich, until you realize you can eat leftovers for a week! Actually, the photo only shows 1/2 a sandwich. I know a few readers who have eaten with me at the Carnegie, and if you care to comment...do so below.) Actually, New Yorkers have never forgiven Los Angeles for stealing the Brooklyn Dodgers, either.
Pastrami & Corned Beef Sandwich: "
Pastrami & Corned Beef Sandwich ($17.95) from Carnegie Delicatessen & Rstrnt in New York, NY uploaded by Graphracker"
Pastrami & Corned Beef Sandwich: "
Pastrami & Corned Beef Sandwich ($17.95) from Carnegie Delicatessen & Rstrnt in New York, NY uploaded by Graphracker"
Sunday, October 4, 2009
checking in - thinkin bout bagels
Sorry to be so shallow...but the choices on today's menu are:
1. Write about how badly I am feeling today, all day. Just really bad and a lot of throat pain.
2. Write about the thing I have been thinking about other than how badly I feel.
3. Skip today and hope tomorrow I will have something other than food on my mind.
I choose #2. I spent almost a full hour lying in bed this morning thinking about my relationship with bagels. It is like a friendship...I have had bagels and memories of bagels at every stage of my life. No bad memories here, just a few lonely stretches of time when bagels (real bagels) were not available here in the Midwest. If the concept of "comfort food" exists, for me it is represented by a toasted fresh bagel, cream cheese and lox. I have loved bagels with such devotion over the years. It was the first thing I noticed missing when I came to Nebraska...I used to fly to visit my family in NY with an extra bag that I could fill with bagels to freeze. Not that bagels weren't sold, but they were grocery store bagels and a disgrace. Finally, in the past decade or maybe two, Brueggers Bagels have come to Lincoln, and they are acceptable. Because bagels are not particularly healthy (fattening, high glycemic index, low nutritional value) I have rationed my intake over the past 20 years. Otherwise, I could have a bagel for breakfast daily, and never get tired of them . I allow myself two bagels a week...one Saturday and one Sunday morning. And the lox (smoked salmon...the best from Nova Scotia) is a luxury I rarely indulge in...it's hard to find in Lincoln, but not impossible, just expensive. So, sometimes it's just a bagel (poppy seed is my favorite) and, of course, Philadelphia cream cheese. Flavored cream cheese does NOT belong on a bagel, anymore than pineapple belongs on a slice of Pizza.
I can be objective and see how people who don't have attachments to bagels can see them as a big blob of not particularly tasty dough, but they just don't understand those of us who grew up eating that masterpiece from infancy.
I was thinking that I have been too harsh about frozen Lenders Bagels from the grocery. Actually, they have their own taste and, while just not in the same league as fresh, bagel store bagels, they deserve to be respected. I was thinking how much I would enjoy even a Lenders frozen bagel...toasted a little too much...bordering on burnt, and a generous amount of cream cheese. If I could eat, I would gladly salute that Lenders and be humbled by how good it would taste.
I was thinking about those little cocktail bagels... they are bland and boring, but a nice snack nonetheless. I don't really like bagel sandwiches; I am a purist about cream cheese.
The one exception I make to the bagel, cream cheese and lox rule is that I will occasionally have a thin slice of a really fresh ripe tomato on the cream cheese on the many occasions when I do not have lox. Somehow the tomato can complement the cream cheese almost as nicely as lox.
So, a bagel, cream cheese and lox, and a cup or two of coffee on a Saturday morning is a wonderful way to start the day. AND, if there is a piece of coffee cake or Danish to follow...it's a holiday. I am a carb junkie. I could eat bread and bagels and cake and cookies and I am a happy camper.
Unfortunately, trying to eat a healthy bagel (whole wheat and low fat cream cheese, etc) just doesn't do it.
I have accepted blueberry bagels into the club, but really, that's more like a dessert than a breakfast. Poppy, sesame seed, onion, garlic, "everything" bagels all are my favorites.
New York bagels...I think it is in the water...are the best. And I always eat the bagel and cream cheese like a sandwich, not open faced. It isn't the same. The next bagel I eat, I am determined to eat mindfully, rather than reading the morning paper and allowing other distractions, (TV, etc) to share my sensory attention. I don't want to rush into it...I want to make sure I can fully appreciate the friendship...I will have to have most of my taste buds fully restored.
I have a few dozen "friends" in the freezer waiting for me...indeed...it will be a happy reunion.
Hey...if there is one food you have a "friendship" with...comment here. No cheating...limit it to one food (a bagel cream cheese and lox is a unit, so it is one food).
I miss you, my poppy seed circles of goodness.
1. Write about how badly I am feeling today, all day. Just really bad and a lot of throat pain.
2. Write about the thing I have been thinking about other than how badly I feel.
3. Skip today and hope tomorrow I will have something other than food on my mind.
I choose #2. I spent almost a full hour lying in bed this morning thinking about my relationship with bagels. It is like a friendship...I have had bagels and memories of bagels at every stage of my life. No bad memories here, just a few lonely stretches of time when bagels (real bagels) were not available here in the Midwest. If the concept of "comfort food" exists, for me it is represented by a toasted fresh bagel, cream cheese and lox. I have loved bagels with such devotion over the years. It was the first thing I noticed missing when I came to Nebraska...I used to fly to visit my family in NY with an extra bag that I could fill with bagels to freeze. Not that bagels weren't sold, but they were grocery store bagels and a disgrace. Finally, in the past decade or maybe two, Brueggers Bagels have come to Lincoln, and they are acceptable. Because bagels are not particularly healthy (fattening, high glycemic index, low nutritional value) I have rationed my intake over the past 20 years. Otherwise, I could have a bagel for breakfast daily, and never get tired of them . I allow myself two bagels a week...one Saturday and one Sunday morning. And the lox (smoked salmon...the best from Nova Scotia) is a luxury I rarely indulge in...it's hard to find in Lincoln, but not impossible, just expensive. So, sometimes it's just a bagel (poppy seed is my favorite) and, of course, Philadelphia cream cheese. Flavored cream cheese does NOT belong on a bagel, anymore than pineapple belongs on a slice of Pizza.
I can be objective and see how people who don't have attachments to bagels can see them as a big blob of not particularly tasty dough, but they just don't understand those of us who grew up eating that masterpiece from infancy.
I was thinking that I have been too harsh about frozen Lenders Bagels from the grocery. Actually, they have their own taste and, while just not in the same league as fresh, bagel store bagels, they deserve to be respected. I was thinking how much I would enjoy even a Lenders frozen bagel...toasted a little too much...bordering on burnt, and a generous amount of cream cheese. If I could eat, I would gladly salute that Lenders and be humbled by how good it would taste.
I was thinking about those little cocktail bagels... they are bland and boring, but a nice snack nonetheless. I don't really like bagel sandwiches; I am a purist about cream cheese.
The one exception I make to the bagel, cream cheese and lox rule is that I will occasionally have a thin slice of a really fresh ripe tomato on the cream cheese on the many occasions when I do not have lox. Somehow the tomato can complement the cream cheese almost as nicely as lox.
So, a bagel, cream cheese and lox, and a cup or two of coffee on a Saturday morning is a wonderful way to start the day. AND, if there is a piece of coffee cake or Danish to follow...it's a holiday. I am a carb junkie. I could eat bread and bagels and cake and cookies and I am a happy camper.
Unfortunately, trying to eat a healthy bagel (whole wheat and low fat cream cheese, etc) just doesn't do it.
I have accepted blueberry bagels into the club, but really, that's more like a dessert than a breakfast. Poppy, sesame seed, onion, garlic, "everything" bagels all are my favorites.
New York bagels...I think it is in the water...are the best. And I always eat the bagel and cream cheese like a sandwich, not open faced. It isn't the same. The next bagel I eat, I am determined to eat mindfully, rather than reading the morning paper and allowing other distractions, (TV, etc) to share my sensory attention. I don't want to rush into it...I want to make sure I can fully appreciate the friendship...I will have to have most of my taste buds fully restored.
I have a few dozen "friends" in the freezer waiting for me...indeed...it will be a happy reunion.
Hey...if there is one food you have a "friendship" with...comment here. No cheating...limit it to one food (a bagel cream cheese and lox is a unit, so it is one food).
I miss you, my poppy seed circles of goodness.
Saturday, October 3, 2009
checking in - nestling in narcoland
The morning deteriorated more rapidly than I have been accustomed to. When I start to feel bad, my whole body starts to feel bad. I started feeling bad before the sun was fully up. Weak, sore, depleted, and my throat, tongue, and mouth lead the pack. You get the idea. So I started the hydrocodone early. I will just keep myself in that zone today. And, it really makes a difference. The drug sort of surrounds me like a warm robe on a chilly evening. I don't get too loopy anymore, I must have adapted to my daily use. And, today, I will indulge by taking a dose at noon, four and eight. I hope that doesn't become a daily reality at this point, but, I repeatedly get told it is not necessary to suffer needlessly when these narcotics are available. So...as I write, I am feeling a little better. Now, I have to focus on keeping hydrated and feeding myself 5 cans of food (it's called Jevity...specifically made for tube feeding.) I never feel like doing that...it's a psychological resistance I think, because there is no reason not to. I am sure that when I start getting dehydrated, it just complicates everything else. I am stubborn in stupid ways.
Another stupid thing I do is watching the food channel. I just watched a show on the best sandwich places in the country. Of course, they featured a few New York Delis, Katz's and the Stage Door deli...featuring huge pastrami and corned beef sandwiches on delicious bread. And a sandwich shop in Pittsburgh that always puts slaw and fries inside the sandwich. I remember doing my internship in Memphis...the year Elvis died...I lived in the ghetto, and I remember venturing out to a small corner deli. I ordered a BBQ chicken sandwich...the guy said..."light or dark meat" I said "dark" He asked..."do you want cole slaw with that?"...I said "sure"...He took a slice of white bread, put a chicken leg (bone and all) on it, scooped a scoop of cole slaw on top of that, and then topped it with the other slice of bread, wrapped it up and handed it to me. I was thinking he was dissing me, but, i was not about to protest...it turned out to be just the way they served it.
I learned that year a little of what it feels like to live as a minority person...I was one of the few white people living in the neighborhood, and I had stones thrown at me a few times by 12 year old gangbangers as I walked to the hospital where I worked. I taught my beautiful American Eskimo dog, Nanook, how to "go" on command...there was a patch of grass behind the apartment complex, and it was very dark and isolated at night. I would take her out at around 10PM...we would run to that patch...and I would shout "GO" and she would squat and take care of business, and then we would run back into the apartment. We had it down to a science...until one day...she chased a cat...I went after her as she pursued the cat...got her turned around, and as I headed back to the apartment, a very large man with a very hostile attitude leaned out his window..."Is that your dog?" He asked..."yes", I replied, thinking he might tell me how beautiful she was...No, he wasn't that type of neighborly... "Well, that is my cat"..."the next time your dog chases my cat, I will kill it." I think I thanked him, and Nanook and I made haste back to the apartment. The director of the Internship told me he insisted I find another place to live as it was a very dangerous part of the city...I looked at it like an adventure...and though I was scared a lot, it really was an adventure. I befriended a guy ( or should I say, he befriended me) who didn't have a telephone and came over to use my phone to line up drug deals...he decided he needed to teach me how to defend myself when out and about. I guess he really needed to keep me safe so as to have access to my phone. He started by telling me to get a pair of dark glasses and wear them 24 hours a day. He said if anyone was able to get a look at my eyes, they would see I was an easy mark. He told me to never take those sunglasses off. He tried to teach me to sound tough....saying things like..."OK, you got a knife, but I have one good kick...come on MF...cut me, and you will spend the rest of your life peeing out of a bag attached to your body." I couldn't pull it off without smiling. We actually did become sort of friends, this inner city drug dealer and I. In fact, he invited me to a get together at his place with some of his friends. I went. His friends and he spoke English, but it was a different language than any English I ever heard. We spent the evening laughing... they at me and the way I talked...and me, at me and the way I talked....it was a lot of fun. And since my man said I was cool, I had no issues with his friends, and they had none with me. I had many, many adventures that year. Inner city Memphis in the late 70's was quite a place. Quite a place. I had an internship experience unlike the other interns, as they all lived in apartments in the safer suburban areas of town...they invited me over to their places, but were unlikely to want to venture out to my neighborhood. I never got cut, never got mugged (but did wind up being "approached" by a man with a gun late one night out back by the patch of grass and ...for real... talked my way out of that, though it was my reasoning, and not my "tough" talk that saved my bacon) and I met some very interesting folks. Quite a year. The internship was decent enough as well.
Another stupid thing I do is watching the food channel. I just watched a show on the best sandwich places in the country. Of course, they featured a few New York Delis, Katz's and the Stage Door deli...featuring huge pastrami and corned beef sandwiches on delicious bread. And a sandwich shop in Pittsburgh that always puts slaw and fries inside the sandwich. I remember doing my internship in Memphis...the year Elvis died...I lived in the ghetto, and I remember venturing out to a small corner deli. I ordered a BBQ chicken sandwich...the guy said..."light or dark meat" I said "dark" He asked..."do you want cole slaw with that?"...I said "sure"...He took a slice of white bread, put a chicken leg (bone and all) on it, scooped a scoop of cole slaw on top of that, and then topped it with the other slice of bread, wrapped it up and handed it to me. I was thinking he was dissing me, but, i was not about to protest...it turned out to be just the way they served it.
I learned that year a little of what it feels like to live as a minority person...I was one of the few white people living in the neighborhood, and I had stones thrown at me a few times by 12 year old gangbangers as I walked to the hospital where I worked. I taught my beautiful American Eskimo dog, Nanook, how to "go" on command...there was a patch of grass behind the apartment complex, and it was very dark and isolated at night. I would take her out at around 10PM...we would run to that patch...and I would shout "GO" and she would squat and take care of business, and then we would run back into the apartment. We had it down to a science...until one day...she chased a cat...I went after her as she pursued the cat...got her turned around, and as I headed back to the apartment, a very large man with a very hostile attitude leaned out his window..."Is that your dog?" He asked..."yes", I replied, thinking he might tell me how beautiful she was...No, he wasn't that type of neighborly... "Well, that is my cat"..."the next time your dog chases my cat, I will kill it." I think I thanked him, and Nanook and I made haste back to the apartment. The director of the Internship told me he insisted I find another place to live as it was a very dangerous part of the city...I looked at it like an adventure...and though I was scared a lot, it really was an adventure. I befriended a guy ( or should I say, he befriended me) who didn't have a telephone and came over to use my phone to line up drug deals...he decided he needed to teach me how to defend myself when out and about. I guess he really needed to keep me safe so as to have access to my phone. He started by telling me to get a pair of dark glasses and wear them 24 hours a day. He said if anyone was able to get a look at my eyes, they would see I was an easy mark. He told me to never take those sunglasses off. He tried to teach me to sound tough....saying things like..."OK, you got a knife, but I have one good kick...come on MF...cut me, and you will spend the rest of your life peeing out of a bag attached to your body." I couldn't pull it off without smiling. We actually did become sort of friends, this inner city drug dealer and I. In fact, he invited me to a get together at his place with some of his friends. I went. His friends and he spoke English, but it was a different language than any English I ever heard. We spent the evening laughing... they at me and the way I talked...and me, at me and the way I talked....it was a lot of fun. And since my man said I was cool, I had no issues with his friends, and they had none with me. I had many, many adventures that year. Inner city Memphis in the late 70's was quite a place. Quite a place. I had an internship experience unlike the other interns, as they all lived in apartments in the safer suburban areas of town...they invited me over to their places, but were unlikely to want to venture out to my neighborhood. I never got cut, never got mugged (but did wind up being "approached" by a man with a gun late one night out back by the patch of grass and ...for real... talked my way out of that, though it was my reasoning, and not my "tough" talk that saved my bacon) and I met some very interesting folks. Quite a year. The internship was decent enough as well.
Friday, October 2, 2009
checking in - TGIF
Radiation day 27 of 35
I say TGIF with ambivalence...it is wonderful to be able to have a few days without getting up early to drive into the jaws of that horror machine. On the other hand...the count stays frozen until Monday. I want this over, and the sooner the better. OK, I will focus on the positive and enjoy being spared the action over the weekend.
To keep it simple today, I'll just stick to the experience of my day; I just slowly have more of the same, plus some, every day. The most painful thing is swallowing, the most horrible thing is the burning out of my salivary glands. The thing I fear the most is vomiting. I do not swallow very much as I do not have normal saliva. Another paradox... the longer I go between swallowing, the more dried out my mouth gets, and the more horrible the next swallow will feel. On the other hand, each swallow is painful. When I wake up after a few hours sleep, the first time I swallow, reality hits me awake like a slap in the face. I wake up very calmly...often, until I move, I am feeling OK...like...somehow there was some healing...it is quiet, it is calm, it is around 2-3:00AM, and everything seems OK for a few moments...very peaceful...then I try to swallow...and I see stars. Then I feel slightly nauseated...though I think...I am NOT going to be ill...and thank God, I have not been for several days. Then I sit up, after having gradually slipped to a more prone position over a few hours. I sit in bed for a few hours...until 6:30AM...these are not too bad as far as hours of the day. Then, I suddenly feel very tired, but force myself out of bed, into the shower, and my day begins. The mornings are consumed by the trip to Omaha and radiation, and sometimes appointments with the oncologist and check of blood levels. The early afternoons are OK; I listen to a book on tape or read for a while, but I start feeling worse as the afternoon goes on...until I take my first dose of narcotic around 4:00. Then, the next few hours are OK...then, I start feeling bad again, then, I take a second dose of narcotic around 9. I take a sleeping pill around 10. I try to read until I pass out...I do not turn the light off...I try to sit up in bed and hopefully just pass out.
I pray in a slightly different way these days...more just visiting with God a few minutes now and again over the course of a day. I also sense the prayers of others...I really do. There is a verse that I have been focusing on as a lifeline...I will share it some day soon, but it really feels sort of private right now. It is not the verse, but the voice of God speaking through it that is so comforting.
Eight days of radiation left. That will be such a lift to me. I know the recovery will be slow, and the burning continues after radiation ends, but what a relief to not have to face that daily ordeal, knowing what it brings. And to at least think, the healing is beginning...
I think my mood is OK and generally, I am in better spirits than I was during the early stages of this when I had infections and got so sick. I was dreading that last round of chemo more than you could imagine, and I really felt overwhelmed with relief when the oncologist told me he did not think I needed to go through that.
It has been around a month since I have had any food or water in my mouth, the last thing was a cup of soup...I think about a month ago. I tried a spoon of plain yogurt, and a spoon of flavored yogurt last night. The flavored yogurt was horrible, the plain yogurt was just miserable. I will wait a few more weeks before trying that again. The sip of water that I take with the sleeping pill is very difficult to get down. The other drugs I have in liquid form and they go into the feeding tube.
Thanks for reading all this. It just is what it is today.
I say TGIF with ambivalence...it is wonderful to be able to have a few days without getting up early to drive into the jaws of that horror machine. On the other hand...the count stays frozen until Monday. I want this over, and the sooner the better. OK, I will focus on the positive and enjoy being spared the action over the weekend.
To keep it simple today, I'll just stick to the experience of my day; I just slowly have more of the same, plus some, every day. The most painful thing is swallowing, the most horrible thing is the burning out of my salivary glands. The thing I fear the most is vomiting. I do not swallow very much as I do not have normal saliva. Another paradox... the longer I go between swallowing, the more dried out my mouth gets, and the more horrible the next swallow will feel. On the other hand, each swallow is painful. When I wake up after a few hours sleep, the first time I swallow, reality hits me awake like a slap in the face. I wake up very calmly...often, until I move, I am feeling OK...like...somehow there was some healing...it is quiet, it is calm, it is around 2-3:00AM, and everything seems OK for a few moments...very peaceful...then I try to swallow...and I see stars. Then I feel slightly nauseated...though I think...I am NOT going to be ill...and thank God, I have not been for several days. Then I sit up, after having gradually slipped to a more prone position over a few hours. I sit in bed for a few hours...until 6:30AM...these are not too bad as far as hours of the day. Then, I suddenly feel very tired, but force myself out of bed, into the shower, and my day begins. The mornings are consumed by the trip to Omaha and radiation, and sometimes appointments with the oncologist and check of blood levels. The early afternoons are OK; I listen to a book on tape or read for a while, but I start feeling worse as the afternoon goes on...until I take my first dose of narcotic around 4:00. Then, the next few hours are OK...then, I start feeling bad again, then, I take a second dose of narcotic around 9. I take a sleeping pill around 10. I try to read until I pass out...I do not turn the light off...I try to sit up in bed and hopefully just pass out.
I pray in a slightly different way these days...more just visiting with God a few minutes now and again over the course of a day. I also sense the prayers of others...I really do. There is a verse that I have been focusing on as a lifeline...I will share it some day soon, but it really feels sort of private right now. It is not the verse, but the voice of God speaking through it that is so comforting.
Eight days of radiation left. That will be such a lift to me. I know the recovery will be slow, and the burning continues after radiation ends, but what a relief to not have to face that daily ordeal, knowing what it brings. And to at least think, the healing is beginning...
I think my mood is OK and generally, I am in better spirits than I was during the early stages of this when I had infections and got so sick. I was dreading that last round of chemo more than you could imagine, and I really felt overwhelmed with relief when the oncologist told me he did not think I needed to go through that.
It has been around a month since I have had any food or water in my mouth, the last thing was a cup of soup...I think about a month ago. I tried a spoon of plain yogurt, and a spoon of flavored yogurt last night. The flavored yogurt was horrible, the plain yogurt was just miserable. I will wait a few more weeks before trying that again. The sip of water that I take with the sleeping pill is very difficult to get down. The other drugs I have in liquid form and they go into the feeding tube.
Thanks for reading all this. It just is what it is today.
Thursday, October 1, 2009
deeper things - a silver tear appearing
Radiation day 26 of 35
What I write is what I write, as I go through it, and today, I have gone through a moment I hope I might be able to convey. I drove to my office and paid October rent, and I drove home. But driving home, this song popped into my head out of nowhere. I haven't been a James Taylor fan since the early 1970's, and I have NEVER been a country music fan. But he did write a few classic songs. And I don't know where or when I heard Alison Krauss sing this, but I must have, because that was the version playing in my mind. And I realized this song was sort of a gift to me in this moment. And so, as is my tendency these days when I am driving alone in my car...a silver tear appeared...
I just felt...dare I say...happy. The past is coming, nay, rushing, to make peace with me...it's not coming to me in a huanted way as it did for so many years. (No explanation necessary...this is a blog...not a case study). The present as well...it just all feels peaceful. I am in crazy physical hell...but in my mind, I am more and more and more...and more...(left open intentionally). And the future...well, it's beckoning, not wanting to be left out...it's got some space for me where the view is great and the sun is shining; I wont always be writing from the dark side of the moon.
I hardly slept last night, but I did not get sick, and I'll take that exchange. Sleep and food...who knew neither was all that important (just kidding). But seriously, I think I only actually sleep about 3 hours a day these days...isn't that odd. I am so tired, but I can't sleep.
So I came home and found this on YouTube. And once again...in my mind...I drifted along to Carolina, with a few tears. And in my mind...please indulge me, even if you don't want to listen... please just listen anyway and catch a few words, and you go there too. Yes, there are times it seems like this ordeal "goes on like this forever"...but it would make me happier if you could travel with me during the good moments like I had today, and maybe if you would listen...it would make me even happier. (Note the very end of the song...by golly...there is James Taylor in the audience.) So...the rest of what I have to say today was written for me already in this song, and has been waiting for years to come out.
By the way, I have absolutely no connection with Carolina...but it wouldn't sound right if James sang..."In my mind I'm going to Long Island."
love is the finest thing around...
What I write is what I write, as I go through it, and today, I have gone through a moment I hope I might be able to convey. I drove to my office and paid October rent, and I drove home. But driving home, this song popped into my head out of nowhere. I haven't been a James Taylor fan since the early 1970's, and I have NEVER been a country music fan. But he did write a few classic songs. And I don't know where or when I heard Alison Krauss sing this, but I must have, because that was the version playing in my mind. And I realized this song was sort of a gift to me in this moment. And so, as is my tendency these days when I am driving alone in my car...a silver tear appeared...
I just felt...dare I say...happy. The past is coming, nay, rushing, to make peace with me...it's not coming to me in a huanted way as it did for so many years. (No explanation necessary...this is a blog...not a case study). The present as well...it just all feels peaceful. I am in crazy physical hell...but in my mind, I am more and more and more...and more...(left open intentionally). And the future...well, it's beckoning, not wanting to be left out...it's got some space for me where the view is great and the sun is shining; I wont always be writing from the dark side of the moon.
I hardly slept last night, but I did not get sick, and I'll take that exchange. Sleep and food...who knew neither was all that important (just kidding). But seriously, I think I only actually sleep about 3 hours a day these days...isn't that odd. I am so tired, but I can't sleep.
So I came home and found this on YouTube. And once again...in my mind...I drifted along to Carolina, with a few tears. And in my mind...please indulge me, even if you don't want to listen... please just listen anyway and catch a few words, and you go there too. Yes, there are times it seems like this ordeal "goes on like this forever"...but it would make me happier if you could travel with me during the good moments like I had today, and maybe if you would listen...it would make me even happier. (Note the very end of the song...by golly...there is James Taylor in the audience.) So...the rest of what I have to say today was written for me already in this song, and has been waiting for years to come out.
By the way, I have absolutely no connection with Carolina...but it wouldn't sound right if James sang..."In my mind I'm going to Long Island."
love is the finest thing around...
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