Yeah, what she said!
Sam is slowly becoming his old self again, although I know he will never, ever truly get all the way back. Each day he tells me a little bit more of what is happening with his body. The other day in my blog, I stated he did not have another doctor's appointment until next month. Silly me. What I found out yesterday is that he actually did have another doctor's appointment, only it was with his doctor at the VA who he sees on a quarterly basis. She is an internist and asked Sam during his appointment if he is aware his liver is enlarged. Uhhh...hmmmmm...yeah...good question. She immediately scheduled an ultrasound for tomorrow morning, meaning Saturday. Is it a good sign when a doctor schedules a test on a Saturday and tells you the door will be locked at the VA clinic so we will have to ring the bell and wait to be let in because the clinic is not normally open on Saturdays? Just curious.
Thinking about all the tests the past 3 years conjured up memories of how the first PET scan went and how much trouble we had with it. The radiologist who read it actually read the wrong test and then when he did pull up the correct one, misdiagnosed Sam and insisted, even while doing a needle biopsy in his lung that it was just scar tissue and he was going to prove it. Oh yes...remembering all that conjured up some rather testy moments in my memory bank and times of actually yelling (how unusual of me) at the person on the other end of the phone, ranting on for several minutes. Then, in January and February of 2010, spending each and every day either on the phone or at the hospital, clinic or various doctors' offices trying to get the diagnosis straight on all of Sam's records. What a nightmare...or perhaps I should rephrase that...I was the nightmare. I am certain when some people saw me coming, they wished they could just close the door and lock it so they would not have to deal with some crazy woman who was half out of her mind because her husband had been misdiagnosed and then found to have stage IV cancer which was, and is, incurable.
Ok...I ranted. Onward.
Today marks week 2 post-chemo and he is that odd looking sallow color which almost makes him look like he is embalmed (no kidding, Roy, you should see him!) Thankfully he smiled often tonight and he kissed me goodnight, first time in 3 months. Happy Dance! It is the little things in life which make a person happy, as I am sure you understand.
Walking is proving to be more and more difficult for him. As we drove to the VA yesterday, he told me he probably only has 75% use of his left leg (the one he lost complete use of in the summer of 2011 and had radiation on) and that his right leg, foot and ankle are having problems, with maybe about 85% use, if not less. Watching him struggle to walk is almost painful at times and we both believe it relates to the tumors in his lower back pressing up against the nerves. Since he cannot have anymore radiation, I wonder if it will be sooner rather than later when he is no longer able to walk.
His spirits are good and for that, I am grateful.
q'ua
Friday, October 26, 2012
Thursday, October 18, 2012
“The deeper that sorrow carves into your being the more joy you can contain. Is not the cup that holds your wine the very cup that was burned in the potter’s oven?” – Kahlil Gibran
Well, I am keeping this short tonight because 1) I am exhausted; and 2) the Ducks are playing.
That being said, the results are better than anticipated, but like Sam keeps repeating, they really do not change anything. The liver is fine, the progression in the lungs is slower; however, there are a few new "hot spots" with one in the T10 vertebrae and 2 new spots in his pelvis. The doctor told him the crazy things Sam is experiencing are side effects from the chemo and typical symptoms of lung cancer (no one has ever really told him that before that I am aware of.)
When I asked if he felt some relief, he replied with a "not really" and then went on to explain, as I noted above, it does not really change anything. No, it certainly does not, but it does give hope to live a bit longer. This down mood really needs to disappear.
Last May before the chemo began, we decided to try to go to Hawaii in January. Those plans went by the wayside during the chemo but tonight he said he would like to try and go. So, it is back on the calendar but we will not make any plans until after the first of the year.
Sam sees the doctor again in a few weeks, then is not scheduled to go back for another month or so after that for a CT scan on his lungs and abdomen.
There you have it. All is "good" for now, but as you all know, in the cancer world, things can change on a dime.
q'ua
That being said, the results are better than anticipated, but like Sam keeps repeating, they really do not change anything. The liver is fine, the progression in the lungs is slower; however, there are a few new "hot spots" with one in the T10 vertebrae and 2 new spots in his pelvis. The doctor told him the crazy things Sam is experiencing are side effects from the chemo and typical symptoms of lung cancer (no one has ever really told him that before that I am aware of.)
When I asked if he felt some relief, he replied with a "not really" and then went on to explain, as I noted above, it does not really change anything. No, it certainly does not, but it does give hope to live a bit longer. This down mood really needs to disappear.
Last May before the chemo began, we decided to try to go to Hawaii in January. Those plans went by the wayside during the chemo but tonight he said he would like to try and go. So, it is back on the calendar but we will not make any plans until after the first of the year.
Sam sees the doctor again in a few weeks, then is not scheduled to go back for another month or so after that for a CT scan on his lungs and abdomen.
There you have it. All is "good" for now, but as you all know, in the cancer world, things can change on a dime.
q'ua
Wednesday, October 17, 2012
The roller coaster ride continues. Me
Just a quick note. As I drove Sam to Providence fot his PET scan, he told me the real reason the doctor ordered the test is because Sam is feeling a deep sharp pain above and to the left of his belly button. For those of you who do not remember your anatomy and physiology classes, that is the liver. I remained calm until after I dropped him off and drove to a park overlooking the Cook Inlet. Just so you know, I am not very calm right now.
Test results are supposed to be given to us tomorrow.
Pray for peace, please.
q'ua
Test results are supposed to be given to us tomorrow.
Pray for peace, please.
q'ua
Monday, October 15, 2012
A woman has got to love a bad man once or twice in her life, to be thankful for a good one. - Marjorie Kinnan
Before I get started, let me just say...BRONCOS!
Last night I had an epiphany of sorts. Sam hardly said a word to me all day and had his headphones on listening to music while watching football. At first I misunderstood the situation thinking that he was attempting to completely ignore me. However, after watching him for awhile, it suddenly dawned on me he was practicing pain management skills taught to him through the palliative care program at Providence. I asked him how he was doing and for the first time, he told me he was in a great deal of pain. The immediate change in my attitude was amazing. It was a complete turnaround from being sad, disgusted, angry, scared and all those negative emotions, to being empathetic, concerned, caring - emotions and feelings I seemed to have lost the past couple months reappeared. I do not want Sam to be in pain. Having him tell me straight up that he is in a great deal of pain tells me he is in more pain than you and I can ever imagine because he has an incredible pain threshold. As to exactly where this pain is, he did not tell me; however, it is probably throughout his entire body which leads me to my thoughts today.
During the course of the cancer journey, you are constantly fed a vast array of information which you slowly digest, allowing it to sink in and then it does not seem to reappear until the necessary time when it is needed most. During our visit to the Seattle Cancer Care Alliance, the doctors walked us through a timeline of sorts, listing events which might happen at various times. One of many things discussed is when there is no more treatment available and/or the pain level is just too much to maintain a good, or even decent, quality of life. Sam and I have had this discussion several times, but it has been awhile so it is not in the forefront of my mind. Until today, that is, when I suddenly recalled what the doctors told us. Often, depending on the patient's request, hospice is called. Not because the end is near, but because hospice provides a much higher level of pain management which cannot be offered through palliative care or the doctor's office. Today, I began preparing myself for that possibility. Please understand that I am preparing for the worse and hoping for the best when I say this.
Sam's PET scan is Wednesday and we are scheduled to receive the results on Thursday. Sam will then be faced with making a decision based on the results, the doctor's recommendations, and hopefully a discussion with me. No matter my opinion, though, it is entirely up to him as to where we go from here. Throughout the past 3 years, Sam has maintained he does not want to live in pain. Initially we discussed in-depth the options, including moving back to Oregon or Washington where assisted suicide is legal, researching the pros and cons of medical marijuana (which is not available to purchase in Alaska, you have to grow your own and needless to say, that is where I put my foot down at the time), morphine in some form, or whatever is available. The bottom line is he does not want to live in a world of pain. Today at work, I shared my tears and my fears with some of my co-workers and because I do not want to cry again right now, I am not going to write any more on this subject tonight. There will be plenty of time later to share whatever route he chooses to take.
Tonight he does seem to be in a much better mood, thank goodness. I prayed long and hard over the weekend for the anger to subside and I am hoping it has. It will take some time for the chemo to work its way through his body and I just need to remember to be patient.
So many of you have called, written, emailed, texted, whathaveyou, and I greatly appreciate every bit of it. It certainly has made it a little easier to handle and I am slowly starting to accept my marriage will never be the same again, no matter what. But that does not mean I do not love Sam any less. In fact, I probably love him more because that is about the only thing I can do.
q'ua
Last night I had an epiphany of sorts. Sam hardly said a word to me all day and had his headphones on listening to music while watching football. At first I misunderstood the situation thinking that he was attempting to completely ignore me. However, after watching him for awhile, it suddenly dawned on me he was practicing pain management skills taught to him through the palliative care program at Providence. I asked him how he was doing and for the first time, he told me he was in a great deal of pain. The immediate change in my attitude was amazing. It was a complete turnaround from being sad, disgusted, angry, scared and all those negative emotions, to being empathetic, concerned, caring - emotions and feelings I seemed to have lost the past couple months reappeared. I do not want Sam to be in pain. Having him tell me straight up that he is in a great deal of pain tells me he is in more pain than you and I can ever imagine because he has an incredible pain threshold. As to exactly where this pain is, he did not tell me; however, it is probably throughout his entire body which leads me to my thoughts today.
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| Helen getting fishing tips from her dad at Bird Creek. |
Sam's PET scan is Wednesday and we are scheduled to receive the results on Thursday. Sam will then be faced with making a decision based on the results, the doctor's recommendations, and hopefully a discussion with me. No matter my opinion, though, it is entirely up to him as to where we go from here. Throughout the past 3 years, Sam has maintained he does not want to live in pain. Initially we discussed in-depth the options, including moving back to Oregon or Washington where assisted suicide is legal, researching the pros and cons of medical marijuana (which is not available to purchase in Alaska, you have to grow your own and needless to say, that is where I put my foot down at the time), morphine in some form, or whatever is available. The bottom line is he does not want to live in a world of pain. Today at work, I shared my tears and my fears with some of my co-workers and because I do not want to cry again right now, I am not going to write any more on this subject tonight. There will be plenty of time later to share whatever route he chooses to take.
Tonight he does seem to be in a much better mood, thank goodness. I prayed long and hard over the weekend for the anger to subside and I am hoping it has. It will take some time for the chemo to work its way through his body and I just need to remember to be patient.
So many of you have called, written, emailed, texted, whathaveyou, and I greatly appreciate every bit of it. It certainly has made it a little easier to handle and I am slowly starting to accept my marriage will never be the same again, no matter what. But that does not mean I do not love Sam any less. In fact, I probably love him more because that is about the only thing I can do.
q'ua
Monday, October 8, 2012
"And how many words have I got to say? And how many times will it be this way? With your arms around the future, and your back up against the past. You're already falling, it's calling you on to face the music - and the song that is coming through. You're already falling, the one that it's calling is you." Moody Blues, The Voice
Tonight, I just want my Sammy back. Rocky threw up all over the place, so I shampooed the carpet in various spots. Sam sat in his recliner and both cats burrowed in on top of him, scared out of their minds. It was absolutely adorable and I wanted a picture. I stopped shampooing, grabbed my iPhone and started to take a picture. Sam got pissed off, said no pictures, threw the cats off his lap, got up and stormed into the bedroom. I could not believe it. He then told me that I had blown it by not turning off a light which I knew shined into his face and then insisted on trying to take a picture when he had told me not to. At this point, I could not tell you if I did or did not. I am a complete mess. He went to bed about an hour ago and I have tried to relax and stop crying, and all I do is cry harder. I am so sad on so many different levels. I know he is not in his right mind and that is the most difficult part. I also know he realizes his behavior is crazy but he cannot stop himself in the midst of the anger and he is too proud to come back and apologize. Besides, by the time he sees me again after these episodes, he has long forgotten them and we have moved on. It is so incredibly painful.
Tomorrow I am going to call his doctor and beg him to not ever put Sam on carboplatin again and to also make sure when they do the PET scan next week, a brain scan is included. He told me earlier today he hurts all over. How can a person live like that? His quality of life right now just sucks. This is not our lifestyle, we are a glass half full family and we are not living like that at all.
I wish I could snap my fingers and everything will be alright. This is pure unadulterated hell and I would not wish this on anyone.
These are the times I find myself freaking out wondering if Sam is ever going to get back to himself or if this is what we are going to live with for however long. I do not want this to be my last memories of him. He accuses me of only worrying about myself, so I suppose I am by saying this. It is quite selfish. On the other hand, I do not want him to have to live like this, either. It is awful. Absolutely awful.
We know so many of you are keeping us in your thoughts and prayers and we both greatly appreciate that. We ask you pray for Sam to be able to maintain a good quality of life in peace and in comfort.
q'ua
Tomorrow I am going to call his doctor and beg him to not ever put Sam on carboplatin again and to also make sure when they do the PET scan next week, a brain scan is included. He told me earlier today he hurts all over. How can a person live like that? His quality of life right now just sucks. This is not our lifestyle, we are a glass half full family and we are not living like that at all.
I wish I could snap my fingers and everything will be alright. This is pure unadulterated hell and I would not wish this on anyone.
These are the times I find myself freaking out wondering if Sam is ever going to get back to himself or if this is what we are going to live with for however long. I do not want this to be my last memories of him. He accuses me of only worrying about myself, so I suppose I am by saying this. It is quite selfish. On the other hand, I do not want him to have to live like this, either. It is awful. Absolutely awful.
We know so many of you are keeping us in your thoughts and prayers and we both greatly appreciate that. We ask you pray for Sam to be able to maintain a good quality of life in peace and in comfort.
q'ua
Sunday, October 7, 2012
Do what you feel in your heart to be right- for you'll be criticized anyway. You'll be damned if you do, and damned if you don't. Eleanor Roosevelt
Eleanor Roosevelt is one of those people from history that if I could spend the day with, she would be one of my first choices. She was an amazing individual and I could learn so much from her.
For the past month, it seems to have rained constantly here in southcentral Alaska and this weekend is no exception. There are still several bridges out on CIRI land which we are slowly beginning to either repair temporarily and/or develop plans for permanent fixes. As everyone is saying, we need to take advantage of this time to build better roads and bridges if we can. And as far as I am concerned, YES WE CAN.
Sam is doing ok. His final chemo treatment for this go round was Friday (I was thinking it was a week earlier, but obviously I was mistaken.) He is sleeping a lot this weekend which is normal and pretty much keeping to himself. Of course, it probably helped that yesterday I did not get up until about 10, hung out for awhile, then left for about 5 hours. It was not my intention to be gone for so long, but it certainly worked out well, probably for both of us. He is complaining about ongoing chest pain and no one knows if it is from the tumor behind his heart, the multitude of other tumors throughout his lungs or what. A PET scan is scheduled for October 17 and then he will see the doctor on the 18th.
The anger is still there, thankfully not as forceful as it was earlier. Even though people in the medical field and other caregivers say this anger is common, especially among men Sam's age and stage of cancer, it certainly does not make it any easier to deal with. I am so lucky that work is extremely busy and creates an escape for me; however, I do often forget to prepare myself for anything when I come home from work and that does create a few intense moments, sometimes lasting for the entire evening and into the next day. It is a learning lesson, to say the least.
The other day I took the trailer in to be winterized and started wondering what next summer will be like. Sam struggles walking but forces himself to keep going because he understands that exercise is not only important, for him it is imperative. I sometimes wonder if that is really what all this anger is about, that he is unable to do all the things he likes to do.
More than anything, I am just extremely glad this chemo is over. If he decides to do more, I hope it it is without the carboplatin because I am convinced that is what is behind the personality change.
Anyway, enough of that! How about those Oregon Ducks? And Oregon State Beavers? And darn those Longhorns! Losing to West Virginia? All I can say is...they better not lose their next game as it is OU Weekend (for all you non-Longhorn fans, that would be Oklahoma). You can lose all the games in the season, just do not lose to Oklahoma. Needless to say...we have had some pretty down years in Austin. And now, my Denver Broncos. Hopefully they can win two games in a row. Peyton looked awesome last weekend and I only got to see it in replays!
Speaking of last weekend, we were on the final glacial cruise of the summer out of Whittier. If you have never taken one of those cruises, I highly recommend that you do. It is phenomenal. Our fourth time and we still saw things we had not seen previously. It truly is stunning.
q'ua
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| 26 Glacier Cruise. Wonder what those guys are looking at? |
Sam is doing ok. His final chemo treatment for this go round was Friday (I was thinking it was a week earlier, but obviously I was mistaken.) He is sleeping a lot this weekend which is normal and pretty much keeping to himself. Of course, it probably helped that yesterday I did not get up until about 10, hung out for awhile, then left for about 5 hours. It was not my intention to be gone for so long, but it certainly worked out well, probably for both of us. He is complaining about ongoing chest pain and no one knows if it is from the tumor behind his heart, the multitude of other tumors throughout his lungs or what. A PET scan is scheduled for October 17 and then he will see the doctor on the 18th.
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| College Glaciers |
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| Sea or Harbor Otters |
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| Sea Lions |
The other day I took the trailer in to be winterized and started wondering what next summer will be like. Sam struggles walking but forces himself to keep going because he understands that exercise is not only important, for him it is imperative. I sometimes wonder if that is really what all this anger is about, that he is unable to do all the things he likes to do.
More than anything, I am just extremely glad this chemo is over. If he decides to do more, I hope it it is without the carboplatin because I am convinced that is what is behind the personality change.
Anyway, enough of that! How about those Oregon Ducks? And Oregon State Beavers? And darn those Longhorns! Losing to West Virginia? All I can say is...they better not lose their next game as it is OU Weekend (for all you non-Longhorn fans, that would be Oklahoma). You can lose all the games in the season, just do not lose to Oklahoma. Needless to say...we have had some pretty down years in Austin. And now, my Denver Broncos. Hopefully they can win two games in a row. Peyton looked awesome last weekend and I only got to see it in replays!
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| Whittier, Alaska |
Speaking of last weekend, we were on the final glacial cruise of the summer out of Whittier. If you have never taken one of those cruises, I highly recommend that you do. It is phenomenal. Our fourth time and we still saw things we had not seen previously. It truly is stunning.
q'ua
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