Sam received his test results today and I am only partially aware of them as once again, I did not get invited to the doctor's appointment (it is that control issue thing many terminally ill patients experience.) There is fluid in the left lung. This news caught me totally by surprise. Interesting thing is, that is about all Sam shared with me. Tomorrow I am expecting a copy of the report in the mail, so hopefully I will find out more. Then again, maybe I do not want to.
Tonight Sam, in passing, also said he might have a stress fracture in his left pelvis/hip/femur area. The challenge with this is there has been no X-ray or MRI done, it is just the level of pain he is experiencing in that area each time he moves. If he keeps complaining of the pain, I am going to insist we go back to the ER.
Sam is walking with a cane for now as is putting forth such a great effort to keep on going.
As for me, I am having a difficult time right now. I so desperately want wish he was going to be ok. As my mother says, I'm just having a moment, I'll be ok in a few minutes.
q'ua
Friday, May 31, 2013
Tuesday, May 28, 2013
You gotta love livin', baby, 'cause dyin' is a pain in the ass. Frank Sinatra
Yes, the posts are getting few and far between and for that, I apologize. It is difficult to write when it is the same thing over and over again. The pain is getting worse. Much much worse. Tonight, for example, the amount of pain Sam is in is almost too much for me to bear. The radiation proved to be ineffective, at least so far. The entire left leg is in pain and Sam is unable to lift his leg by itself, he must use his hands to help lift. The talk now is of getting a walker or a wheelchair as he is unable to walk or stand without any pain. We expected possible issues from his back, but not from his leg. It is heartbreaking. The amount of pain meds also increased at the last appointment and I am now thinking the next appointment might even bring a whole new ballgame.
On a happier note, Sam's sister Gina and
partner, Mitch, came for a visit over Memorial Day. They met us in Talkeetna where I worked all last week. One of the activities we wanted to do was jetboat up the Susitna River through Devils Canyon. Well...if you have not heard...summer did not arrive in Alaska until late last week. The river did not begin break up until Saturday. Instead, we rode the Hurricane Train, basically the local service, to and from Talkeetna. We almost did not make it back to town because the ice was coming up over the track. Oh boy! But, the river subsided enough for us to safely return quickly.
Thank you to all who sponsored myeslf and/or members of the Glass Half Full team in the 2013 Alaska Clean Air Challenge. WOW. What a ride. Next year is going to be even bigger and better, so if you have any desire whatsoever, the Glass Half Full team would love to have you join us. The first day was a blizzard and the second day was sunshine which made the ride that much more challenging for those who chose to ride on the first day. Brakes, tires, gears, everything froze up so most people rode in one gear for a good part of the way, if not all of the way. It was amazing. Glass Half Full raised the most money as a team and, thanks to all of you, I managed to raise the most funds individually with 3 of my team members raising over $1000 each as well. We broke records this year. Alaska is one of the remaining states in which smoking is allowed in some workplaces throughout the state. I will not get into the craziness of how this all works, but in the 2014 legislative season, the Alaska Chapter of the American Lung Association will be working hard to make it illegal to smoke in any and all workplaces throughout the entire state.
Just so you know, as I sit here looking at the thermometer on our deck with the sun shining directly upon it...it reads 100 degrees. Yikes. Thank goodness it is only because of the location of the sunshine. Otherwise, it is probably about 70 out and very, very sunny. At least for another day.
q'ua
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| Sam, Dara, Gina, Mitch and the Alaska Railroad Hurricane Train |
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| The Mighty Susitna! |
partner, Mitch, came for a visit over Memorial Day. They met us in Talkeetna where I worked all last week. One of the activities we wanted to do was jetboat up the Susitna River through Devils Canyon. Well...if you have not heard...summer did not arrive in Alaska until late last week. The river did not begin break up until Saturday. Instead, we rode the Hurricane Train, basically the local service, to and from Talkeetna. We almost did not make it back to town because the ice was coming up over the track. Oh boy! But, the river subsided enough for us to safely return quickly.
Thank you to all who sponsored myeslf and/or members of the Glass Half Full team in the 2013 Alaska Clean Air Challenge. WOW. What a ride. Next year is going to be even bigger and better, so if you have any desire whatsoever, the Glass Half Full team would love to have you join us. The first day was a blizzard and the second day was sunshine which made the ride that much more challenging for those who chose to ride on the first day. Brakes, tires, gears, everything froze up so most people rode in one gear for a good part of the way, if not all of the way. It was amazing. Glass Half Full raised the most money as a team and, thanks to all of you, I managed to raise the most funds individually with 3 of my team members raising over $1000 each as well. We broke records this year. Alaska is one of the remaining states in which smoking is allowed in some workplaces throughout the state. I will not get into the craziness of how this all works, but in the 2014 legislative season, the Alaska Chapter of the American Lung Association will be working hard to make it illegal to smoke in any and all workplaces throughout the entire state.
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| Glass Half Full - Joann, Kimi, Ellie, Cindi & Dara 2013 Alaska Clean Air Challenge |
Just so you know, as I sit here looking at the thermometer on our deck with the sun shining directly upon it...it reads 100 degrees. Yikes. Thank goodness it is only because of the location of the sunshine. Otherwise, it is probably about 70 out and very, very sunny. At least for another day.
q'ua
Tuesday, May 7, 2013
May your trails be crooked, winding, lonesome, dangerous, leading to the most amazing view. May your mountains rise into and above the clouds. Edward Abbey
Summer! Or at least...what might possibly be summer, I think...hope...PRAY! This weekend is the inaugural camping trip regardless of the weather. Sunshine would be awesome.
Sam is doing ok. Radiation on his upper left femur lasted for ten days and he says he has yet to notice any real difference in the pain level. That is not good news, yet the doctors say it could be awhile before any effect is realized. Luckily, Sam is still maintaining a pretty good mood and I am very greatful for that. He does get grumpy every once in a while, but that is usually indicative of him needing to eat. Or maybe it is indicative of me needing to eat! I digress.
The pain meds add a level of fatigue which is difficult for me to deal with. Normally, Sam is up and ready to go on weekends, but not anymore. This past weekend it finally occurred to me that I am more bummed than I realized about the fatigue. Another light bulb moment in my life. Overall, though, each day I do see an improvement in his energy level and that is an awesome thing.
Other than that, the past few weeks proved to be rather uneventful except for a short walk we took on the Bird to Gird path a few weeks ago. A simply beautiful day to be out on Turnagain Arm.
As for me, I am training, or at least claiming to be training, for the 2013 Alaska Clean Air Bike Challenge. Only 11 more days! And no, it is not too late to donate - http://action.lung.org/site/TR?px=4777818&fr_id=6580&pg=personal. Or to just come ride with us.
Q'ua
Sam is doing ok. Radiation on his upper left femur lasted for ten days and he says he has yet to notice any real difference in the pain level. That is not good news, yet the doctors say it could be awhile before any effect is realized. Luckily, Sam is still maintaining a pretty good mood and I am very greatful for that. He does get grumpy every once in a while, but that is usually indicative of him needing to eat. Or maybe it is indicative of me needing to eat! I digress.
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| Sam on Bird to Gird trail. |
Other than that, the past few weeks proved to be rather uneventful except for a short walk we took on the Bird to Gird path a few weeks ago. A simply beautiful day to be out on Turnagain Arm.
As for me, I am training, or at least claiming to be training, for the 2013 Alaska Clean Air Bike Challenge. Only 11 more days! And no, it is not too late to donate - http://action.lung.org/site/TR?px=4777818&fr_id=6580&pg=personal. Or to just come ride with us.
Q'ua
Wednesday, April 17, 2013
Hope in reality is the worst of all evils because it prolongs the torments of man. Friedrich Nietzsche
True.
Today marked the final day of radiation on Sam's leg. With that came two doctor appointments and this evening I am slowly being informed of the day's consultations. Here is what I have learned so far:
1. It is going to be awhile before he notices a change in his leg. Hmmm...wonder how long "awhile" means?
2. He is not to bend, squat, or, if he can avoid it, even walk as the doctors are now "intensely" concerned he will fracture his leg.
3. The leg cannot handle anymore weight, in fact, Sam should lose some. Not sure what the definition of "some" is.
4. Sam and the medical oncologist are still discussiong whether or not to go back on the Xgeva. If he does, it might involve Sam giving himself the injections. The doctor is not at all excited about this. Nor is Sam's wife, if anyone is asks.
5. He is finally figuring out the correct pain management system.
As for me, I realized tonight I am exhausted. There. I said it. Now I am going to bed.
Today marked the final day of radiation on Sam's leg. With that came two doctor appointments and this evening I am slowly being informed of the day's consultations. Here is what I have learned so far:
1. It is going to be awhile before he notices a change in his leg. Hmmm...wonder how long "awhile" means?
2. He is not to bend, squat, or, if he can avoid it, even walk as the doctors are now "intensely" concerned he will fracture his leg.
3. The leg cannot handle anymore weight, in fact, Sam should lose some. Not sure what the definition of "some" is.
4. Sam and the medical oncologist are still discussiong whether or not to go back on the Xgeva. If he does, it might involve Sam giving himself the injections. The doctor is not at all excited about this. Nor is Sam's wife, if anyone is asks.
5. He is finally figuring out the correct pain management system.
As for me, I realized tonight I am exhausted. There. I said it. Now I am going to bed.
Sunday, April 14, 2013
“What good is the warmth of summer, without the cold of winter to give it sweetness.” ― John Steinbeck, Travels with Charley: In Search of America
Today is absolutely beautiful here in Alaska. Blue skies, snow on the mountains, snow on the ground quickly melting! Sam and I drove to Willow so I could check out the bike path from Houston to Willow. The Alaska Clean Air Challenge is in 34 days and I sure hope the snow is melted by then. The bike path still has quite a bit of snow on it. It is not too late for you to join us in the ride or, if you would rather not ride, to donate and help me meet my fundraising goal. This year's ride seems to be affecting me much more deeply than last year, probably because Sam's cancer is progressing but yet he is still here with me. I am so very grateful for that. Here is the link if you would like to donate or ride with the Glass Half Full team - Dara Glass - Alaska Clean Air Challenge 2013 - just click on the "Donate to My Cause" button on the upper left hand side and you should be good to go. To all of you who have donated so far, thank you from the bottom of my heart! And to Joann, Cindi and Ellie, we are going to have a fantastic time!
Sam is doing ok. He is in radiation for his upper left femur. Three more days this week and then he is done for now. He says he does not notice a difference yet in the pain level which is different from previous radiation treatments when he noticed a difference right away. It will be interesting to hear what the doctor says about it. This week we both have been somewhat challenged in wrapping our minds around the situation. Possibly for the first time since the initial diagnosis we are both at the same place at the same time with understanding where things are at. We still go back to the "hope for the best and expect the worst" in order not to get our hopes up and to continue living each day to the fullest. The hard part is that in living each day to the fullest, Sam cannot come anywhere close to what he was able to do last summer, let alone 3 summers ago. He does his best, though, and I cannot ask for anymore. Several nights this past week I cried myself to sleep because of where we are at. Knowing he is not going to be able to do many of the things he loves to do this summer breaks my heart. Apparently he experienced several sleepless nights this week because of the same thoughts. He is bound and determined to do what he can, though...like sitting on the Ninilchik beach enjoying the view and watching the setnetters.
As we keep telling ourselves and everyone else, it is not as if we can just flip a switch and turn it all off. Darn it all anyway.
Q'ua
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| Freezer's almost empty, cans are almost gone - good thing fishing season is almost here! |
As we keep telling ourselves and everyone else, it is not as if we can just flip a switch and turn it all off. Darn it all anyway.
Q'ua
Tuesday, March 26, 2013
“Pick the day. Enjoy it - to the hilt. The day as it comes. People as they come... The past, I think, has helped me appreciate the present, and I don't want to spoil any of it by fretting about the future.” ― Audrey Hepburn
Well, here I sit, trying to put into words my world and not having much luck at it. Sam and I went to Tok and Fairbanks over the weekend, enjoyed every minute of it, ate at Fast Eddy's, watched some of Tok Sled Dog races, drove through some hellacious snowstorms, froze our butts off, listened to a semi idling just beneath our hotel window all night, drove into Denali as far as we could, and rushed home Sunday for Sam's CT scan and MRI on Monday morning. The doctor's appointment, scheduled for late this afternoon, got cancelled by the doctor himself who called Sam directly about the tests. Oh boy. But before I get to that, I need to back up a few weeks.
Friday, March 8, my cell phone rang just as I walked into my office from a meeting. Normally, I always have my cell phone with me, but this particular time, I did not take it to the meeting with me,therefore, I did not see the text Sam sent. The text said, "I'm sorry but I need you to come home." Well, guess what, he called as well (smart man) and all I heard was, "I need your help, you need to come home." As I ran down 5 flights of stairs and across the parking lot to the truck, I realized I at least grabbed my bag since it had my keys because I did not have my coat, gloves, boots, nada. Even better, very little traffic in my one mile flight home to quickly park and run back up 3 flights of stairs, gather myself as I ran down the hall to find my husband in the most intense pain I have ever seen him in. Apparently, his pain had increased dramatically the previous few days and he decided to increase his pain pill dosage, unbeknownst to me, of course. For those of you who are unaware, pain pills tend to make a person very constipated, so the more you take, the more constipated you become. For Sam, taking more pain pills to manage the pain, in turn created even more pain because he became more and more constipated, creating a viscious cycle for himself. By the time he called me, he could hardly stand up. So, off to the ER we went and spent 6 lovely hours on a beautiful Anchorage afternoon with a wonderful nurse and doctor. They pumped him full of fluids, gave him high potency laxatives and sent him on his way with the stern reprimand of "talk to your doctor about your current pain management program!" Ok, I admit, I did snicker during that lecture but no one heard me, thankfully. Nothing like a grown man lecturing another grown man.
Needless to say, when Sam saw his regular oncologist last week, they discussed the pain meds and adjusted them accordingly, taking into consideration the thoughtful and very helpful hint our personal friend, Dr. Kirkham, gave regarding pain meds. Sam is slowly becoming adjusted to the new meds, today realizing that they also help him breath better as he finds himself often taking short breaths trying to catch his breath. Just another viscious cycle.
So, all that aside, we are now up to this week and the test results. The CT scan and MRI show that the cancer is now eating away at his left femur. In other words, his upper left thigh, which explains the increase of pain among other things. Several times over the past few weeks, Sam told me it hurt to stand and to walk. He is so brave because he refuses to let it take over his life. The doctor called him because he is concerned Sam will break his leg, as am I! The only thing that can be done for him at this point is radiation, palliative care radiation, not curable radiation, in hopes to slow the cancer growth and keep it from spreading further, or rather, eating away anymore of his femur. More than likely Sam will go back to Xgeva treatments as well, a very mild chemo, for the bone metastasis. All of this in hopes to lengthen his life span and help him maintain some semblance of a good quality of life.
Now that I wrote all this down, I feel much better, so thank you for listening. People ask all the time if I am scared. No, I am not scared, but I am worried. All the time. 24/7. But I cannot let it control me, so I push it out of my mind and focus best as I can on just living in the moment because, in the grand scheme of things, that is all one truly has.
In the past few weeks, a man who is like a second dad to me (I spent many hours at their house) was diagnosed with lung cancer. His doctors were proactive and sent him in for surgery after discovering a small tumor in his lung. Hopefully that is all there was and he will be considered a survivor for many years to come. Another person who was a huge part of my sister's life was also diagnosed with lung cancer at the same time. His diagnosis is not good as he has small cell lung cancer and still smokes. Stop smoking people! Please!
May 18 and 19 I am participating in the Alaska Clean Air Bike Challenge again. I hope you will help me in my fight against lung disease. http://action.lung.org/daraglass Either help me meet my fundraising goal, or better yet, come ride with me. Either way, we will make a difference.
q'ua
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| On the shores of Kauai. Oh how I wish we were there again! |
Needless to say, when Sam saw his regular oncologist last week, they discussed the pain meds and adjusted them accordingly, taking into consideration the thoughtful and very helpful hint our personal friend, Dr. Kirkham, gave regarding pain meds. Sam is slowly becoming adjusted to the new meds, today realizing that they also help him breath better as he finds himself often taking short breaths trying to catch his breath. Just another viscious cycle.
So, all that aside, we are now up to this week and the test results. The CT scan and MRI show that the cancer is now eating away at his left femur. In other words, his upper left thigh, which explains the increase of pain among other things. Several times over the past few weeks, Sam told me it hurt to stand and to walk. He is so brave because he refuses to let it take over his life. The doctor called him because he is concerned Sam will break his leg, as am I! The only thing that can be done for him at this point is radiation, palliative care radiation, not curable radiation, in hopes to slow the cancer growth and keep it from spreading further, or rather, eating away anymore of his femur. More than likely Sam will go back to Xgeva treatments as well, a very mild chemo, for the bone metastasis. All of this in hopes to lengthen his life span and help him maintain some semblance of a good quality of life.
Now that I wrote all this down, I feel much better, so thank you for listening. People ask all the time if I am scared. No, I am not scared, but I am worried. All the time. 24/7. But I cannot let it control me, so I push it out of my mind and focus best as I can on just living in the moment because, in the grand scheme of things, that is all one truly has.
In the past few weeks, a man who is like a second dad to me (I spent many hours at their house) was diagnosed with lung cancer. His doctors were proactive and sent him in for surgery after discovering a small tumor in his lung. Hopefully that is all there was and he will be considered a survivor for many years to come. Another person who was a huge part of my sister's life was also diagnosed with lung cancer at the same time. His diagnosis is not good as he has small cell lung cancer and still smokes. Stop smoking people! Please!
May 18 and 19 I am participating in the Alaska Clean Air Bike Challenge again. I hope you will help me in my fight against lung disease. http://action.lung.org/daraglass Either help me meet my fundraising goal, or better yet, come ride with me. Either way, we will make a difference.
q'ua
Sunday, March 3, 2013
"It has been a tough race. If you actually think this is fun, you have a problem." - 2004 Iditarod winner Mitch Seavey of Seward, Alaska
Iditarod weekend - one of the traditions Sam and I look forward to every year. Sam surprised me this year by wanting to go to the start in Willow. The past couple weeks Sam experienced intense pain in his lymph nodes in his neck and in his left hip/pelvis. So we kept a slow pace today, missing some of our favorites mushers, but we at least got there and stayed for an hour or so. The Iditarod committee spends a great amount of time each year reminding people to NOT bring their pets to neither the ceremonial start nor the actual start, including placing signs in the parking lot stating, "No pets allowed," and most people respect the request. However...as we walked back out to the parking lot, a guy came towards us with an adult Irish setter/retriever mix and I could not stop myself. I stopped him, politely explained pets are not allowed at the race...and do you know what he said to me? Well, where can I take him? HELLO??? Anywhere but here? The Iditarod is a professional race with a ton of money involved and you want to bring your pet? ARGH. Anyway, he followed us back out to the parking lot with the dog. Does it take a rocket scientist to realize bringing your pets to the Iditarod might not be a good thing or is it just me? Ok, I will stop my rant for now as I am sure you get how I feel about this.
For those of you who would like to track the teams, www.iditarod.com is the place to go. Sam and I are "Iditarod Insiders," as like I said before, we are completely hooked on the race. We tell each other all the time it is a good thing we did not move to Alaska earlier in our lives because we would probably be out there ourselves.
Back to Sam's current issues, we talked yesterday and he is going to contact his primary physician at the VA about the pains, especially the pain in the hip/pelvis area. The reason for this is that the primary will hopefully send Sam to an orthopedic surgeon to look at the hip/pelvis and determine if it is worth the while to replace or at least do something to mitigate the situation. If not, Sam will more than likely end up with some kind of patch which will work as a localized painkiller, such as Fentenyl. Not sure how I feel about that, but if it is going to alleviate the pain he is in, then ok, let's go for it.
He is working hard to build back up his energy level and his strength. Slowly but surely he is succeeding. His moods are good, he is looking forward to the summer, and is making plans to do things, albeit not at the same levels as before, but fishing is only a couple months away! Today he even discussed indepth with me an easier way to take the cats with us which completely surprised me.
Overall, Sam is doing good, although we both know the cancer is slowly progressing. Yesterday during our discussion we both agreed absolutely no more chemo, although he might consider Zometa again for the bone mets. What the Alimta/carboplatin did to both of us last summer is something neither of us ever want to experience again, especially since it is not a cure, just a growth management treatment, which may or may not be successful. Just not worth it to either of us.
As for me, life is good. Work is terrific (still!) Fishing is right around the corner, even better.
q'ua
For those of you who would like to track the teams, www.iditarod.com is the place to go. Sam and I are "Iditarod Insiders," as like I said before, we are completely hooked on the race. We tell each other all the time it is a good thing we did not move to Alaska earlier in our lives because we would probably be out there ourselves.
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| Dara & Sam on the trip to Sitka, Alaska. |
He is working hard to build back up his energy level and his strength. Slowly but surely he is succeeding. His moods are good, he is looking forward to the summer, and is making plans to do things, albeit not at the same levels as before, but fishing is only a couple months away! Today he even discussed indepth with me an easier way to take the cats with us which completely surprised me.
Overall, Sam is doing good, although we both know the cancer is slowly progressing. Yesterday during our discussion we both agreed absolutely no more chemo, although he might consider Zometa again for the bone mets. What the Alimta/carboplatin did to both of us last summer is something neither of us ever want to experience again, especially since it is not a cure, just a growth management treatment, which may or may not be successful. Just not worth it to either of us.
As for me, life is good. Work is terrific (still!) Fishing is right around the corner, even better.
q'ua
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