Meagan's knees are still pretty banged up from her falls ten days ago, and are causing a fair bit of pain. I think some of her walking this last week (we did the Greenlake loop on Wednesday, which is 2.8 miles) exacerbated the situation, so this morning we iced up the right one and she will take it easy today. But that is not the only problem. Her back is sore - we don't know if that is the result of the falls or an indicator of something else. It is not in the same location as the pain that led to the diagnosis of the spinal tumors. She also has an unusual pain and tingling and numbness in her right arm that runs from her wrist to her shoulder. This showed up a couple days ago - it's hard to believe it is fall-related. So net net, I am more than a little concerned that the spinal tumors are spreading and causing some nerve impingement leading to pain. For now, a couple ibuprofen work to ease it, but I am going to get her in to see Dr Kaplan tomorrow. It may be we have to accelerate the schedule for the spinal column CT scan.
Her tumor on her left upper arm is definitely growing again, and she wants it cut out. It is a very good indicator that the Temodar is no longer working (as if new brain tumors were not sufficient confirmation). All of this means our week ahead just got more complicated and busy - it takes two visits with the surgeon to get the tumor out (initial consult, then in-office procedure), plus Kaplan visit, likely CT scan of spine, previously scheduled Gammaknife treatment for brain tumors on Thursday, and then Kaplan will probably want to start the new chemo ASAP if we see him tomorrow.
It's no wonder she was pretty upset and teary this morning - lots of evidence of the disease impacting her life, including pain and discomfort, which until recently has largely been absent.
Showing posts with label dealing with cancer. Show all posts
Showing posts with label dealing with cancer. Show all posts
Sunday, September 25, 2011
Thursday, September 22, 2011
The Missing Fun Factor
Just an observation...I recall that there used to be periods of time in my life where I could have something called "fun". It might have been on a vacation, or during a period of time where all was particularly going well and I was engaged in some particular activity. I recall one summer we spent quite a bit of extended time at Decatur when the kids were young, and it was weeks of tennis, crabbing, good food and friends, playing "capture the flag" - without much of a care for things outside that bubble. That was definitely fun. Certainly with a growing family and work responsibilities and school and working on the spousal relationship there were stressful periods and hard periods, but usually we had something to look forward to that we knew would be a stress relief - a ski vacation or trip to Hawaii - a period of time when you could (even if artificially) pack your troubles away and enjoy life. In hindsight I can see that a lot of what I considered stresses back then were peanuts compared to today, and I should have been much more grateful for the everyday life we had and found more fun in that, rather than just waiting for a particular period of time like a vacation.
Today the situation is very different, and not in a good way. I don't think I've had any fun for a couple years now, since Meagan and I had a vacation in Hawaii in the Fall of '09. I've definitely had enjoyable moments - such as dinner with friends, a bike ride, going to a game with my boys - but it always comes with the backdrop of the disease and Meagan's condition. It's like a little cloud of doom that follows you everywhere. You can't really get it out of your head. That, coupled with the added burden of being the caregiver, the family emotional rock, the kid supporter, the information liaison, the researcher, etc. puts you in a state that pretty much precludes "fun" being a part of one's life. And there is no end in sight for that changing. I know I should be grateful for the privileged life we lead, compared to so many others throughout the world who have wretched living conditions with no possibility of improvement. I know that at some point in the future, beyond what I can see today, our situation will change and likely "fun" will come back into my life.
I'm not morose about this, I have far bigger things to attend to. But it does give me pause and has caused me to reflect on how to at least find some measure of goodness in life. It really gets down to gratitude and appreciation for the positive things I have - friends and family who show their love and support. It's deeper than fun, and more meaningful and valuable. But I do miss the fun.
Today the situation is very different, and not in a good way. I don't think I've had any fun for a couple years now, since Meagan and I had a vacation in Hawaii in the Fall of '09. I've definitely had enjoyable moments - such as dinner with friends, a bike ride, going to a game with my boys - but it always comes with the backdrop of the disease and Meagan's condition. It's like a little cloud of doom that follows you everywhere. You can't really get it out of your head. That, coupled with the added burden of being the caregiver, the family emotional rock, the kid supporter, the information liaison, the researcher, etc. puts you in a state that pretty much precludes "fun" being a part of one's life. And there is no end in sight for that changing. I know I should be grateful for the privileged life we lead, compared to so many others throughout the world who have wretched living conditions with no possibility of improvement. I know that at some point in the future, beyond what I can see today, our situation will change and likely "fun" will come back into my life.
I'm not morose about this, I have far bigger things to attend to. But it does give me pause and has caused me to reflect on how to at least find some measure of goodness in life. It really gets down to gratitude and appreciation for the positive things I have - friends and family who show their love and support. It's deeper than fun, and more meaningful and valuable. But I do miss the fun.
Thursday, September 1, 2011
One Year Anniversary
Today marks the one year anniversary from the time we got the call from Dr. Kaplan to tell us that is was metastatic melanoma. It ranks pretty high up there on the worst days of my life meter, followed two days later by us having to skype the boys separately and tell them.
Meagan had discovered a lump on her upper chest in the Spring, and after sonograms and biopsies, we discovered that it was malignant breast cancer - or so we were told. It was an unusual variety - what they call "triple negative" breast cancer, because it did not have the usual estrogen receptors associated with breast cancer - which also made it a more deadly and hard to beat cancer. We found that out around July 2nd - I remember telling Meagan what a helluva birthday present that was (mine is the 3rd). So July and August were about getting ready for treatment - we expected her to undergo surgery, chemotherapy and radiation treatment (the usual slash, poison, burn protocol which passes for modern day cancer treatment). She was also going to have a port installed to make chemo easier. But then there was this annoying lump on the back of her left shoulder that had been there for three years. After our two week planned vacation in August to visit Edinburgh and then see Casey play in the Ultimate Frisbee World Championships for Under 21 years of age in Germany, we sprung into action - she had the surgery and lump removed and the port installed (a surgical procedure itself). The pathology report and surgery report from the earlier partial mastectomy of the breast lump had been encouraging - no indication of cancer on the lymph nodes - so at least at that time we knew she had malignant cancer, but that it had not spread (metastatic).
We had a visit scheduled with our oncologist, Dr. Kaplan for I think that Monday, which gave the pathology team the whole weekend to diagnose the lump on her back. When we met with him on Monday he did not have the results yet - which was curious to him and us. So we are on pins and needles the next day (he had promised to call us to let us know after he kicked some butt) - the thought that it might be breast cancer which had spread via the blood pathway instead of the lymphatic system was scary. We had some inkling, because when the surgeon held up the removed tissue from her back it sure looked like a tumor. But Meagan was holding up well, and we felt with Dr. Kaplan's care we could beat this thing.
Around 10pm we went to bed - thinking he had just gotten tied up and we'd talk to him in the morning. Bt the phone rang - it was Kaplan - and after he told Meagan, I could hear her tell him, "this is not good news at all is it". A diagnosis of metastatic melanoma was far worse news than a diagnosis of metastatic breast cancer. At the time, he told her that treatment for metastatic melanoma had improved and it was not the immediate death sentence it was even two years ago, and that there was some reason for hope. I remember after she hung up that we were both in shock - just stunned by the turn of events and the implications.
As it turns out science hasn't advanced that far. The new treatments didn't work for her. Thankfully some of the technology has evolved and the ability of the radiation piece of the treatment puzzle to handle tumors and cancer in areas it had not been able to do so before has been used on her (and continues with the Tomo therapy radiation treatment).
So our journey continues. She's pretty tough and has done better than the odds, given where the disease has presented itself. We aren't celebrating today though. We are just grateful for her continued presence in our lives and for the love and support of the entire community of friends and family who have helped us get so far.
Meagan had discovered a lump on her upper chest in the Spring, and after sonograms and biopsies, we discovered that it was malignant breast cancer - or so we were told. It was an unusual variety - what they call "triple negative" breast cancer, because it did not have the usual estrogen receptors associated with breast cancer - which also made it a more deadly and hard to beat cancer. We found that out around July 2nd - I remember telling Meagan what a helluva birthday present that was (mine is the 3rd). So July and August were about getting ready for treatment - we expected her to undergo surgery, chemotherapy and radiation treatment (the usual slash, poison, burn protocol which passes for modern day cancer treatment). She was also going to have a port installed to make chemo easier. But then there was this annoying lump on the back of her left shoulder that had been there for three years. After our two week planned vacation in August to visit Edinburgh and then see Casey play in the Ultimate Frisbee World Championships for Under 21 years of age in Germany, we sprung into action - she had the surgery and lump removed and the port installed (a surgical procedure itself). The pathology report and surgery report from the earlier partial mastectomy of the breast lump had been encouraging - no indication of cancer on the lymph nodes - so at least at that time we knew she had malignant cancer, but that it had not spread (metastatic).
We had a visit scheduled with our oncologist, Dr. Kaplan for I think that Monday, which gave the pathology team the whole weekend to diagnose the lump on her back. When we met with him on Monday he did not have the results yet - which was curious to him and us. So we are on pins and needles the next day (he had promised to call us to let us know after he kicked some butt) - the thought that it might be breast cancer which had spread via the blood pathway instead of the lymphatic system was scary. We had some inkling, because when the surgeon held up the removed tissue from her back it sure looked like a tumor. But Meagan was holding up well, and we felt with Dr. Kaplan's care we could beat this thing.
Around 10pm we went to bed - thinking he had just gotten tied up and we'd talk to him in the morning. Bt the phone rang - it was Kaplan - and after he told Meagan, I could hear her tell him, "this is not good news at all is it". A diagnosis of metastatic melanoma was far worse news than a diagnosis of metastatic breast cancer. At the time, he told her that treatment for metastatic melanoma had improved and it was not the immediate death sentence it was even two years ago, and that there was some reason for hope. I remember after she hung up that we were both in shock - just stunned by the turn of events and the implications.
As it turns out science hasn't advanced that far. The new treatments didn't work for her. Thankfully some of the technology has evolved and the ability of the radiation piece of the treatment puzzle to handle tumors and cancer in areas it had not been able to do so before has been used on her (and continues with the Tomo therapy radiation treatment).
So our journey continues. She's pretty tough and has done better than the odds, given where the disease has presented itself. We aren't celebrating today though. We are just grateful for her continued presence in our lives and for the love and support of the entire community of friends and family who have helped us get so far.
Tuesday, August 30, 2011
Guys: Part Deux
I've had the enormous good fortune to become friends with one of Meagan's oldest male friends. He responded to my earlier post about guys. I think his insight is brilliant and wanted to share it, with his permission.
I think we men are full of fear. Fear that comes in a variety of flavors.
Nick, you are a strong, extremely successful man. That's enough to deter most guys right there. What could we possibly offer that you couldn't supply yourself, and probably better than we could at our best? Who are we to offer insight? Perspective? Like it or not you are an alpha. To admit to ourselves that you require assistance . . . well, what does that mean for us? If you can be vulnerable, what chance have we?
Yes, I'm also convinced that we eventually turn any situation back on ourselves. That's not necessarily narcissistic. It's human. A survival trait.
There is also the fear, through our inability to 'fix' the situation for you, that we might make things worse.
There is the fear - a basic, primal, 'magical thinking' - that tells us that if we give voice and recognize the severity, the reality of what you are experiencing, that somehow we will also somehow be touched or bring illness into our lives.
There is the fear that if we talk, we will feel. And, among most men, feeling is weakness.
There is also the fear that we are interfering in an extremely personal time for all of you.
And we are afraid of a thousand other major and minor things that twist inside until all we can do is offer platitudes and change the subject.
Pretty interesting perspectives. Much to ponder here. What can I do to help my male friends and acquaintances feel safe asking questions (it's not necessary to offer advice)? What can I do to make them comfortable hearing about my feelings? Or is anything I do useless in the face of biology?
I don't mean to blast all my my male acquaintances and friends. I just think this is a very interesting issue and certainly one that I care about for individual and broader reasons.
Wednesday, August 24, 2011
Meagan's Latest Update - The Day Before Spine Radiation Starts
Dear All,
I hope you are each finding just what you need to remind each of us what makes the oncoming of autumn so special. I love this time of year...even as we move a little later into the season...the crispness of morning contrasted to the warming day. I remember how Nick and I would get so tired of the southern california weather....blue sky, blue sky, blue sky...not a cloud, or interesting variation in the horizon to contemplate. Needless to say, we ( at least some of us~smile~) are anticipating the progression of autumn like an old friend.
Life continues to be an adventure in the health dept. It has not been easy. Melanoma continues to remind me that my last day, or days, is just around the corner and with the help of Nick and the boys somehow there are enough days that I feel really pretty good. Physically I continue to feel great! Lots of energy, humor that seems not to let me down as often as I would expect, dear friends who keep their eyes on me so I don't get run down by that car I insist on passing in order to enjoy a stroll through the arboretum. Emotionally, this last week and a half has turned into a crap shoot. And the hardest of my life. In the span of one week, I was told I had incurable melanoma which had traveled to my spine, this was one day before I was told that the status of my brain tumor actually looked really good. But the doc (who is wonderful by the way...I love them all!) who saw the scans last took another look with more info and saw a little more to be hopeful about so called for a 3rd Doc so now we are about to start a brand new treatment that spot zaps/radiated the cancer up and down the spine. I know it sounds like a daunting task, and it is. Our odds are not good but hopefully we can keep our spirits high enough, for long enough, that we can still hope for some lovely times ahead. No one here, or in Kaplan's office is willing to commit to an time frame...Take one day at a time and remember that all there is to be grateful for. If we can wring out some months, or more, well...I'll take it.
As is so often the case, I've learned, the hardest part of it all is dealing with the side effects of the meds. They make me loopy and there is not much I like less than not feeling "sharp". Hopefully, these side effects will ease with time.
Again, I want to thank you all sooooooooo much for your support....support of All kinds, the runs for Specialty Cookies, the tears shared with friends, and so many other meaningful facets contributed to my family's journey over the last many months I am brought to tears. Thank you, thank you, thank you. After today, I start 5 weeks of / 5 days per week of radiation treatment. It would be wonderful f0r me to generate the correspondence to stay in steady touch with you all but I know this will be a larger charge than I can take on. Trust however that I will think of you all and keep you tucked away in my "Coat of Arms" (If you don't know about it ask someone who does...a place I look to to find you all and a sense of peace." Nick will be updating his blog regularly. Our little elves who seem to keep us fed in the face of all this stress manage somehow to humble us with their tenacity. A part of me aches when I think about how we've turned into such a "high maintenance" family when what we really want to do is give back. All I can manage instead is the deepest gratitude. The rest leaves me speechless.
So, I will send a note when I can but look more to the blog. I will not be responding to most email but will still be loving you all.
Please take the best care. Add a sprig of magenta and orange flowers you find in your garden, and we will meet again. ~smile~
Much Love,
Meagan Anne
I hope you are each finding just what you need to remind each of us what makes the oncoming of autumn so special. I love this time of year...even as we move a little later into the season...the crispness of morning contrasted to the warming day. I remember how Nick and I would get so tired of the southern california weather....blue sky, blue sky, blue sky...not a cloud, or interesting variation in the horizon to contemplate. Needless to say, we ( at least some of us~smile~) are anticipating the progression of autumn like an old friend.
Life continues to be an adventure in the health dept. It has not been easy. Melanoma continues to remind me that my last day, or days, is just around the corner and with the help of Nick and the boys somehow there are enough days that I feel really pretty good. Physically I continue to feel great! Lots of energy, humor that seems not to let me down as often as I would expect, dear friends who keep their eyes on me so I don't get run down by that car I insist on passing in order to enjoy a stroll through the arboretum. Emotionally, this last week and a half has turned into a crap shoot. And the hardest of my life. In the span of one week, I was told I had incurable melanoma which had traveled to my spine, this was one day before I was told that the status of my brain tumor actually looked really good. But the doc (who is wonderful by the way...I love them all!) who saw the scans last took another look with more info and saw a little more to be hopeful about so called for a 3rd Doc so now we are about to start a brand new treatment that spot zaps/radiated the cancer up and down the spine. I know it sounds like a daunting task, and it is. Our odds are not good but hopefully we can keep our spirits high enough, for long enough, that we can still hope for some lovely times ahead. No one here, or in Kaplan's office is willing to commit to an time frame...Take one day at a time and remember that all there is to be grateful for. If we can wring out some months, or more, well...I'll take it.
As is so often the case, I've learned, the hardest part of it all is dealing with the side effects of the meds. They make me loopy and there is not much I like less than not feeling "sharp". Hopefully, these side effects will ease with time.
Again, I want to thank you all sooooooooo much for your support....support of All kinds, the runs for Specialty Cookies, the tears shared with friends, and so many other meaningful facets contributed to my family's journey over the last many months I am brought to tears. Thank you, thank you, thank you. After today, I start 5 weeks of / 5 days per week of radiation treatment. It would be wonderful f0r me to generate the correspondence to stay in steady touch with you all but I know this will be a larger charge than I can take on. Trust however that I will think of you all and keep you tucked away in my "Coat of Arms" (If you don't know about it ask someone who does...a place I look to to find you all and a sense of peace." Nick will be updating his blog regularly. Our little elves who seem to keep us fed in the face of all this stress manage somehow to humble us with their tenacity. A part of me aches when I think about how we've turned into such a "high maintenance" family when what we really want to do is give back. All I can manage instead is the deepest gratitude. The rest leaves me speechless.
So, I will send a note when I can but look more to the blog. I will not be responding to most email but will still be loving you all.
Please take the best care. Add a sprig of magenta and orange flowers you find in your garden, and we will meet again. ~smile~
Much Love,
Meagan Anne
Saturday, August 20, 2011
Identity
A friend sent me the book, "About Alice", by Calvin Trillin. It's a wonderful book, a love story really about his wife. Alice died of her cancer related treatments. One line she said in a speech really struck me - "the worst thing cancer can do is rob you of your identity". How true...
That is one of the side effects of our journey. Meagan has suffered many insults to her brain. The stroke was bad enough - with some permanent loss of things like right side peripheral vision and ability to handle numbers and dates. The medications for brain radiation treatment and seizures affect her cognitive capabilities. The recent Gamma knife brain radiation treatment has further affected her thinking ability and her speech. All these may be temporary - but of course the concern is they do not resolve before the end. Her biggest expressed concern is over her mind - which is one of the cores of her identity. Not being able to be lucid, sharp, and intellectual is a huge loss - and undermines her self-image and identity. It is tragic.
We try to focus her on the non-intellectual things which are the core of her 'Meagan-ness". Relationships and engagement. Empathy and care. Meagan is not defined by one thing. If you think about a person in terms of concentric circles or rings of a tree, with each space between the lines being one element of a person - sure, she may be losing some of the rings - but like a tree she is still growing. I am in awe of her capacity for courage and expression, her grace under this enormous burden, and her ability to discover the goodness in things, and the gratitude she shows for so many things. Many of these are new, or latent but now exposed. Her emails/letters are shining examples of what she still is and what she is becoming.
That is one of the side effects of our journey. Meagan has suffered many insults to her brain. The stroke was bad enough - with some permanent loss of things like right side peripheral vision and ability to handle numbers and dates. The medications for brain radiation treatment and seizures affect her cognitive capabilities. The recent Gamma knife brain radiation treatment has further affected her thinking ability and her speech. All these may be temporary - but of course the concern is they do not resolve before the end. Her biggest expressed concern is over her mind - which is one of the cores of her identity. Not being able to be lucid, sharp, and intellectual is a huge loss - and undermines her self-image and identity. It is tragic.
We try to focus her on the non-intellectual things which are the core of her 'Meagan-ness". Relationships and engagement. Empathy and care. Meagan is not defined by one thing. If you think about a person in terms of concentric circles or rings of a tree, with each space between the lines being one element of a person - sure, she may be losing some of the rings - but like a tree she is still growing. I am in awe of her capacity for courage and expression, her grace under this enormous burden, and her ability to discover the goodness in things, and the gratitude she shows for so many things. Many of these are new, or latent but now exposed. Her emails/letters are shining examples of what she still is and what she is becoming.
Wednesday, August 17, 2011
The Back Story...
A double entendre...
This has been a particularly troubling last 5 days. Physically as well as emotionally. To recap, a week ago Monday, Meagan complained of some pain in her lower tailbone area. We got in to see Kaplan right away, and while he couldn't feel anything in the indicated area, he recommended a CT scan and bone scan. So the CT scan was scheduled for Thursday morning (11th) and the bone scan for following Monday morning (15th). Obviously the concern was spread of tumors, since we know that the disease has been essentially unchecked and we have been fighting the main battle up in her brain. To top it all off, on Friday (12th) she underwent Gamma knife radiation treatment for her two discovered brain tumors.
She had the CT scan on Thursday the 11th and we got a call from Kaplan that night. First he talked to me - and told me two things - tumors in the tailbone area causing pain, and treatable with radiation; and tumors in spinal column, untreatable. Then he asked the phone be passed to Meagan. I guess he wanted me to be sure I got the clear message, since we both are aware of Meagan's cognitive challenges. She talked to him for quite a while. After hanging up, she described the presence of tumors near the tailbone and how those could be treated with radiation, but said nothing about the tumors on her spinal column. Now this was pretty late, for us, and at that point I made the decision not to press the issue about what else he might have said to her. This is one of those cabana boy tough calls - balancing kindness and comfort with clarity and precision. I have also been in this position before where her recall has been different than my recall of a conversation even when we are in the same room and I usually lose out on those because even if I'm right, I'm wrong. Because precision doesn't really lead to anything but grief and sadness and doesn't change the overall outlook. Knowing she had a tough day ahead of her with the Gamma knife treatment the next day was a factor as well. So I held my tongue and we went to bed.
The next day was pretty much consumed with the Gamma knife and she had some Avastan which made her sleepy and out of it. So between the procedure and downtime when she napped there was no time to talk and when we got home she napped most of the afternoon. Of course I was busily googling about metastatic tumors of the spinal column. On Friday afternoon I also informed the boys as I had previously committed to them to not withhold information from them, even if it was withheld from Meagan. They also agreed not to tell her about the spinal tumors.
It wasn't until Saturday that we had a chance to talk more about the overall situation and the new news about the tumors discovered on the CT scan. In an oblique way I asked her what she remembered about her conversation with Kaplan and she confessed to not remembering much. It was throughout the day that we also realized she was indeed having side effects from the Gamma knife radiation treatment (fuzziness, memory issues, speech difficulty, a little physical instability). So I spent most of the day caring for her and sitting on the horns of a dilemma - do I tell her what I heard from Kaplan or not. Is blissful ignorance better (knowing the truth will come out on Tuesday) than knowing the "facts". If I tell her, it becomes a situation of "he said, she heard" - and I didn't have any information about where the tumors were or impact or anything - because the call with Kaplan had been brief and we were seeing him Tuesday. So I emailed Kaplan and said essentially, she didn't get the same message you told me, but I am not pressing the point and will leave it to you to give her the full story in person, He got back to me quickly (this is Saturday remember) and said he has fine with that.
Well, my intuitive wife must have sensed there was something else going on. Because when we went to bed Saturday night she asked me if there was something else Kaplan had told me that she was not aware of. Gulp. So I told her. You can well imagine the reaction. I really had nothing to add to help her process it - other than to indicate that to me untreatable was a big difference between treatable. But that we would have to wait until we saw Kaplan to understand what it meant.
So for the next two days, Sunday and Monday, Meagan sort of leapt to the conclusion that her days were numbered, life was short and that she better get busy. These were highly emotional days. I did email Kaplan and told him that Meagan now knew what I knew and that he should be prepared and he acknowledged that. So we walked into the appointment yesterday (Tuesday) expecting not just bad news, but terrible news.
As I outlined in my post of yesterday, the message in person was a little different. The facts were not different - the existence of the spinal tumors is undisputed. The extent of the spread was greater than I imagined. But his suggestion that he still had some treatment options was a different message than he told me over the phone (surprise!) and offered a ray of hope to Meagan, something she desperately wants. The hope is that she has more time than expected (these tumors don't cause imminent death) and there at least some treatments to try (versus none). So she walked out of there with a palpable sense of relief.
The problem (or one of the many problems) is that this swing in emotions from utter hopelessness and fear of imminent demise to one of a sliver of hope and thinking you have a bit more time is extreme. And that swing is almost paralyzing. She was in a daze most of the rest of the day - almost a state of shock. She couldn't think straight and was near tears. It was literally all she could do to just sit there and eat and eventually take a bath and then fall asleep. For her, an emotional person already, this kind of extreme volatility of emotions, is overwhelming. And that is why we concluded, in those times we could talk yesterday, that the setting of expectations about timeframes, progression, outcomes is just not productive. It's likely to be wrong, this disease is a moving target with little certainty of intermediate steps (even though she knows that in the long term it's going to get her) and therefore it's better to set no expectations than be run through the emotional wringer when the outcome is different one way or the other.
Of course I second guess myself. Should I have lied to her on Saturday night? If I had, she would have had two good days and the meeting with Kaplan as it turned out would have been ok. But I didn't know he was going to give her different information that he gave me. So if he had told her what he told me, would it have been better to have her prepared?
This whole scenario is another reason this job completely sucks.
But I have to buckle up the straps and be prepared to support her for another day. She has a 4:45pm MRI appointment today that will take about 4 hours - detailed looks at her spinal column in preparation for the Cyberknife treatment of the tumors near the base of her spine. My understanding is the tumors in her spinal column in the epidural space are not treatable with radiation. So we do have to wait to treat those via Kaplan- and a lot can happen to them in the 2-3 months we are waiting. And whether the possible treatments will have any effect is probably low - but it's not nothing.
At least it's sunny out...
This has been a particularly troubling last 5 days. Physically as well as emotionally. To recap, a week ago Monday, Meagan complained of some pain in her lower tailbone area. We got in to see Kaplan right away, and while he couldn't feel anything in the indicated area, he recommended a CT scan and bone scan. So the CT scan was scheduled for Thursday morning (11th) and the bone scan for following Monday morning (15th). Obviously the concern was spread of tumors, since we know that the disease has been essentially unchecked and we have been fighting the main battle up in her brain. To top it all off, on Friday (12th) she underwent Gamma knife radiation treatment for her two discovered brain tumors.
She had the CT scan on Thursday the 11th and we got a call from Kaplan that night. First he talked to me - and told me two things - tumors in the tailbone area causing pain, and treatable with radiation; and tumors in spinal column, untreatable. Then he asked the phone be passed to Meagan. I guess he wanted me to be sure I got the clear message, since we both are aware of Meagan's cognitive challenges. She talked to him for quite a while. After hanging up, she described the presence of tumors near the tailbone and how those could be treated with radiation, but said nothing about the tumors on her spinal column. Now this was pretty late, for us, and at that point I made the decision not to press the issue about what else he might have said to her. This is one of those cabana boy tough calls - balancing kindness and comfort with clarity and precision. I have also been in this position before where her recall has been different than my recall of a conversation even when we are in the same room and I usually lose out on those because even if I'm right, I'm wrong. Because precision doesn't really lead to anything but grief and sadness and doesn't change the overall outlook. Knowing she had a tough day ahead of her with the Gamma knife treatment the next day was a factor as well. So I held my tongue and we went to bed.
The next day was pretty much consumed with the Gamma knife and she had some Avastan which made her sleepy and out of it. So between the procedure and downtime when she napped there was no time to talk and when we got home she napped most of the afternoon. Of course I was busily googling about metastatic tumors of the spinal column. On Friday afternoon I also informed the boys as I had previously committed to them to not withhold information from them, even if it was withheld from Meagan. They also agreed not to tell her about the spinal tumors.
It wasn't until Saturday that we had a chance to talk more about the overall situation and the new news about the tumors discovered on the CT scan. In an oblique way I asked her what she remembered about her conversation with Kaplan and she confessed to not remembering much. It was throughout the day that we also realized she was indeed having side effects from the Gamma knife radiation treatment (fuzziness, memory issues, speech difficulty, a little physical instability). So I spent most of the day caring for her and sitting on the horns of a dilemma - do I tell her what I heard from Kaplan or not. Is blissful ignorance better (knowing the truth will come out on Tuesday) than knowing the "facts". If I tell her, it becomes a situation of "he said, she heard" - and I didn't have any information about where the tumors were or impact or anything - because the call with Kaplan had been brief and we were seeing him Tuesday. So I emailed Kaplan and said essentially, she didn't get the same message you told me, but I am not pressing the point and will leave it to you to give her the full story in person, He got back to me quickly (this is Saturday remember) and said he has fine with that.
Well, my intuitive wife must have sensed there was something else going on. Because when we went to bed Saturday night she asked me if there was something else Kaplan had told me that she was not aware of. Gulp. So I told her. You can well imagine the reaction. I really had nothing to add to help her process it - other than to indicate that to me untreatable was a big difference between treatable. But that we would have to wait until we saw Kaplan to understand what it meant.
So for the next two days, Sunday and Monday, Meagan sort of leapt to the conclusion that her days were numbered, life was short and that she better get busy. These were highly emotional days. I did email Kaplan and told him that Meagan now knew what I knew and that he should be prepared and he acknowledged that. So we walked into the appointment yesterday (Tuesday) expecting not just bad news, but terrible news.
As I outlined in my post of yesterday, the message in person was a little different. The facts were not different - the existence of the spinal tumors is undisputed. The extent of the spread was greater than I imagined. But his suggestion that he still had some treatment options was a different message than he told me over the phone (surprise!) and offered a ray of hope to Meagan, something she desperately wants. The hope is that she has more time than expected (these tumors don't cause imminent death) and there at least some treatments to try (versus none). So she walked out of there with a palpable sense of relief.
The problem (or one of the many problems) is that this swing in emotions from utter hopelessness and fear of imminent demise to one of a sliver of hope and thinking you have a bit more time is extreme. And that swing is almost paralyzing. She was in a daze most of the rest of the day - almost a state of shock. She couldn't think straight and was near tears. It was literally all she could do to just sit there and eat and eventually take a bath and then fall asleep. For her, an emotional person already, this kind of extreme volatility of emotions, is overwhelming. And that is why we concluded, in those times we could talk yesterday, that the setting of expectations about timeframes, progression, outcomes is just not productive. It's likely to be wrong, this disease is a moving target with little certainty of intermediate steps (even though she knows that in the long term it's going to get her) and therefore it's better to set no expectations than be run through the emotional wringer when the outcome is different one way or the other.
Of course I second guess myself. Should I have lied to her on Saturday night? If I had, she would have had two good days and the meeting with Kaplan as it turned out would have been ok. But I didn't know he was going to give her different information that he gave me. So if he had told her what he told me, would it have been better to have her prepared?
This whole scenario is another reason this job completely sucks.
But I have to buckle up the straps and be prepared to support her for another day. She has a 4:45pm MRI appointment today that will take about 4 hours - detailed looks at her spinal column in preparation for the Cyberknife treatment of the tumors near the base of her spine. My understanding is the tumors in her spinal column in the epidural space are not treatable with radiation. So we do have to wait to treat those via Kaplan- and a lot can happen to them in the 2-3 months we are waiting. And whether the possible treatments will have any effect is probably low - but it's not nothing.
At least it's sunny out...
Tuesday, August 16, 2011
D-Day
I believe that today we will find out the extent of the invasion of the cancer in Meagan's spinal column, and elsewhere. We have a meeting with Dr. Kaplan at 11am. He will have sufficient data to be be able to tell us where the disease is and what are the implications.
She had the CT scan last Thursday and yesterday she had the bone scan. The bone scan was easy - you get an injection of radioactive material and then come back in an hour and lay down for a hour and fifteen minutes (and snooze) while they run you though a silent machine. They covered her with heavy warm blankets, so she was thrilled. We walked down to the Seattle University campus during the break and sat in the shade (we no longer consider the sun quite as friendly as we once did) and enjoyed the beautiful landscaping.
She's prepared for bad news. We've talked a lot about what involvement in the spinal column could mean. It's scary and throws off her vision of a lovely and peaceful ending. Because it could involve pain and she is very fearful of losing her mind (either to administration of pain medication or additional tumors in the brain that may or may not be treated). So we have had discussions about what death with dignity looks like.
It's difficult stuff, and it's also challenging because she is definitely experiencing side effects from the Gamma knife radiation treatment (confusion, speech difficulties, memory challenges) that make it hard for her to track exactly the issues and consequences. We are hoping it is temporary while her brain rewires, but as she sorta jokes in her maudlin way - "let's hope it happens before I kick the bucket".
Pat, optimistic reassurances do little these days except provoke negative responses. So I am resorting to simple agreement and acknowledgment. Because we are on the same team.
More later today...
She had the CT scan last Thursday and yesterday she had the bone scan. The bone scan was easy - you get an injection of radioactive material and then come back in an hour and lay down for a hour and fifteen minutes (and snooze) while they run you though a silent machine. They covered her with heavy warm blankets, so she was thrilled. We walked down to the Seattle University campus during the break and sat in the shade (we no longer consider the sun quite as friendly as we once did) and enjoyed the beautiful landscaping.
She's prepared for bad news. We've talked a lot about what involvement in the spinal column could mean. It's scary and throws off her vision of a lovely and peaceful ending. Because it could involve pain and she is very fearful of losing her mind (either to administration of pain medication or additional tumors in the brain that may or may not be treated). So we have had discussions about what death with dignity looks like.
It's difficult stuff, and it's also challenging because she is definitely experiencing side effects from the Gamma knife radiation treatment (confusion, speech difficulties, memory challenges) that make it hard for her to track exactly the issues and consequences. We are hoping it is temporary while her brain rewires, but as she sorta jokes in her maudlin way - "let's hope it happens before I kick the bucket".
Pat, optimistic reassurances do little these days except provoke negative responses. So I am resorting to simple agreement and acknowledgment. Because we are on the same team.
More later today...
Sunday, August 14, 2011
Yesterday
She was a bit fuzzy all day, presumably an after effect of the radiation. She also had difficulty speaking, and although it got a bit better throughout the day, she still had to slow down and enunciate clearly and formulate her thoughts before talking. So the radiologist wasn't quite right when she said, no side effects from the Gamma knife brain radiation treatment....
She had a leisurely morning and then we went to Greenlake and she was able to walk all around it. We had a nice lunch and then came home and had a quiet afternoon and evening.
She still has pain in her tailbone area from the tumor; at this point Advil seems to do the trick to alleviate the pain. But I think she also senses there is more.
She was pretty distraught after we went to bed. The enormity of the challenge, the onslaught of symptoms and tumors and the speed with which they seem to be developing - all lead her to a conclusion of inevitability. She also feels herself drifting away - part of this is stroke related cognitive effects, part of it is medication, and part the side effects of the latest brain radiation - but she knows she isn't as sharp as she once was and can't think as well, and sees the physical changes. So in between all the sobbing - she kept saying "I don't want to leave you" (to which I responded, "you will never leave me") and, "I'm sorry I'm causing this problem" (to which I responded. "you are not responsible, this is something happening to you, and we are all sharing in the experience and it is making all of us better people"). So it was a pretty distressing and emotionally wracking evening.
She had a leisurely morning and then we went to Greenlake and she was able to walk all around it. We had a nice lunch and then came home and had a quiet afternoon and evening.
She still has pain in her tailbone area from the tumor; at this point Advil seems to do the trick to alleviate the pain. But I think she also senses there is more.
She was pretty distraught after we went to bed. The enormity of the challenge, the onslaught of symptoms and tumors and the speed with which they seem to be developing - all lead her to a conclusion of inevitability. She also feels herself drifting away - part of this is stroke related cognitive effects, part of it is medication, and part the side effects of the latest brain radiation - but she knows she isn't as sharp as she once was and can't think as well, and sees the physical changes. So in between all the sobbing - she kept saying "I don't want to leave you" (to which I responded, "you will never leave me") and, "I'm sorry I'm causing this problem" (to which I responded. "you are not responsible, this is something happening to you, and we are all sharing in the experience and it is making all of us better people"). So it was a pretty distressing and emotionally wracking evening.
Friday, August 12, 2011
Update - direct from Meagan - dated August 11
Dear All,
This will be short and I am remiss for not keeping a steady stream of info coming your way, but know you are in my thoughts and I find comfort knowing you are there. ~smile~
So, had a lovely early meal of barium this morning to prep for a CT scan. I am getting pretty "old hat" at all of this stuff but the barium.....uh...not so much. Anyway, CT results got today. Kaplan wanted them since I have not had a CT or Bone scan in 6 months. We did discover another tumor that has grown since we did a CT 6 months ago which we also need to address with some "zappage" ...likely next week. It is in another location...not in the brain...and can be dealt with by radiation as well. We'll know more on monday after the bone scan on Monday and come up with a plan to move forward sooner rather than later.
On a bigger note, I ALSO am having some Gamma Knife radiation tomorrow morning. Dr. Vermulan has been very reassuring about this procedure...three teeny tiny zappings of (3 different spots. of the brain.) There are expected to be minimal side effects, pain, or discomfort, primarily just fatigue. So, I am not spending too much time worrying. One day at a time and Vermulan's news is relatively good. The brain stuff tends to be the scariest and is under control and doing well, at this point. The rest we manage.
This is not the most uplifting note but an update none the less. It is important to me that you all have an idea what is coming down the pike and send your best thoughts and have our "Coats of Arms" at the ready. I appreciate all you have each contributed to this journey. I am not afraid and much of it has been lovely.
Updates will follow.
Much love,
Meagan
This will be short and I am remiss for not keeping a steady stream of info coming your way, but know you are in my thoughts and I find comfort knowing you are there. ~smile~
So, had a lovely early meal of barium this morning to prep for a CT scan. I am getting pretty "old hat" at all of this stuff but the barium.....uh...not so much. Anyway, CT results got today. Kaplan wanted them since I have not had a CT or Bone scan in 6 months. We did discover another tumor that has grown since we did a CT 6 months ago which we also need to address with some "zappage" ...likely next week. It is in another location...not in the brain...and can be dealt with by radiation as well. We'll know more on monday after the bone scan on Monday and come up with a plan to move forward sooner rather than later.
On a bigger note, I ALSO am having some Gamma Knife radiation tomorrow morning. Dr. Vermulan has been very reassuring about this procedure...three teeny tiny zappings of (3 different spots. of the brain.) There are expected to be minimal side effects, pain, or discomfort, primarily just fatigue. So, I am not spending too much time worrying. One day at a time and Vermulan's news is relatively good. The brain stuff tends to be the scariest and is under control and doing well, at this point. The rest we manage.
This is not the most uplifting note but an update none the less. It is important to me that you all have an idea what is coming down the pike and send your best thoughts and have our "Coats of Arms" at the ready. I appreciate all you have each contributed to this journey. I am not afraid and much of it has been lovely.
Updates will follow.
Much love,
Meagan
Friday, August 5, 2011
Mind the Gap
The gap between women and men that is - you know, the "Men are from Mars, Women from Venus" syndrome. Apparently I have been too much like Mars and not enough like Venus. So I've got to figure out how to help support Meagan using "tender, careful and encouraging" language. I totally get what she needs - that space to find some comfort and solace to be able to continue to LIVE while she is alive. It's just that as a guy, sometimes I can't even figure out the right words - it's like being in Germany and trying to speak German and all I know are three romance languages. So I am a work in progress...
This is an incredibly difficult time. I have four things going on at once:
1. trying to understand where she is in terms of disease progression, status, treatment options and impacts, and what that all means - and dealing with scan results that require immediate action. And helping others set expectations.
2. Trying to help support her in dealing with all of this. There is the feeling part and me learning to act and think and talk like a girl. And it is definitely challenged by her cognitive capabilities and recollections. Because if I try to correct her recall, it invalidates her feelings - and most of the time even though she might be off on the details, she's right broad brush and it is about her and her feelings.
3. Trying to help my boys deal with all this and explain it to them in guy talk because that is what they want and need.
4. Processing my own feelings and grief.
Did I say this was hard? It't not, it's super hard.
This is an incredibly difficult time. I have four things going on at once:
1. trying to understand where she is in terms of disease progression, status, treatment options and impacts, and what that all means - and dealing with scan results that require immediate action. And helping others set expectations.
2. Trying to help support her in dealing with all of this. There is the feeling part and me learning to act and think and talk like a girl. And it is definitely challenged by her cognitive capabilities and recollections. Because if I try to correct her recall, it invalidates her feelings - and most of the time even though she might be off on the details, she's right broad brush and it is about her and her feelings.
3. Trying to help my boys deal with all this and explain it to them in guy talk because that is what they want and need.
4. Processing my own feelings and grief.
Did I say this was hard? It't not, it's super hard.
Wednesday, August 3, 2011
Direct Note from Meagan regarding the latest scans
Dear All,
I hope this note finds you all well and settling into the restful days of summer. It is hard to believe that if I close my eyes, and concentrate just a little, I can almost feel that coming hint of fall in the early morning air. It certainly is not a "knock you out" obvious sort of reminder that autumn is around the corner but more a gentle reminder that, like the seasons, Time marches on. It's really a lovely thing.
Well, as most of you know, Nick and I met with our dear Kaplan today and found out the results of our latest brain scan. Though the brain tumors that were removed and zapped two months ago have disappeared others have since grown. They are small, yet do need to be dealt with so our next step is to meet again with Dr. Vermeulan and develop a plan which will likely include gamma knife radiation which will allow for a more controlled approach than the total whole brain radiation (though this could come next if the results are still less than what Kaplan feels is still worth trying). We will set up an app. with Vermeulan and come up with our plan and expect to have a treatment next week (thank god, for my wig "Audrey"). The treatment should be painless though leave me muddled again for a few days. Other than that, the side effects are not bad. We will cross our fingers that this treatment, with the chemo, has some impact. What we do know now is that we still continue to hope to buy time. It is a tough road however as each opportunity for the tumor to be blasted is met now with a corresponding tumor growth response multiple fold. Two months ago we were dealing with two brain tumors, though those are toast, now we are dealing with 5 more smaller ones. The hardest news to share is that, though nothing is cast in stone, is appearing like my quirky life expectancy has been adjusted to about 2 to 6 months. Please trust that I share this with you all not to drum up a whirlwind of sympathy or onslaught of busy bee activity, but rather I hope to just share with you the profoundness of this time and the gratitude I feel to be "awake" to my great good fortune at all. Granted, a lot of this just sucks! A lot of it is such a magnificent surprise! But I hope with practice and concentration and acceptance, I...we...will find a way to find the profound and quiet beauty in many of the shared moments to come. You have all made my life so much for lovely and worth living. You have all made me feel deeply cherished, incredibly loved, especially appreciated and sometimes even funny. ~smile~ Thank you for all of that.
As before, I will be keeping my correspondences primarily via email. It is easier to keep communiques sorted and I can manage them as i have time and not feel totally overwhelmed. I will try to answer all I can, as I can. I do promise to keep you all in my thoughts and send waves of love to everyone of you for your support over the months. My family could not have managed as well without your care and the amazing attention you have shown each other as well. I am so deeply grateful. And thank you too, to the most amazing husband/cabana boy and two incredible young men to call sons, a woman could ever ask for. xoxoxo Man, they have been on one heck of a journey 0f their own and they have risen to the surreal occasion with grace and courage. We are truly blessed.
So, onward...you will hear from me again. All our plans for the next few days have been canceled as we are rescheduling next week and the week after with Vermullen but rest assured we will slip a note in here and there.
Much, much love to you all,
Meagan Anne
I hope this note finds you all well and settling into the restful days of summer. It is hard to believe that if I close my eyes, and concentrate just a little, I can almost feel that coming hint of fall in the early morning air. It certainly is not a "knock you out" obvious sort of reminder that autumn is around the corner but more a gentle reminder that, like the seasons, Time marches on. It's really a lovely thing.
Well, as most of you know, Nick and I met with our dear Kaplan today and found out the results of our latest brain scan. Though the brain tumors that were removed and zapped two months ago have disappeared others have since grown. They are small, yet do need to be dealt with so our next step is to meet again with Dr. Vermeulan and develop a plan which will likely include gamma knife radiation which will allow for a more controlled approach than the total whole brain radiation (though this could come next if the results are still less than what Kaplan feels is still worth trying). We will set up an app. with Vermeulan and come up with our plan and expect to have a treatment next week (thank god, for my wig "Audrey"). The treatment should be painless though leave me muddled again for a few days. Other than that, the side effects are not bad. We will cross our fingers that this treatment, with the chemo, has some impact. What we do know now is that we still continue to hope to buy time. It is a tough road however as each opportunity for the tumor to be blasted is met now with a corresponding tumor growth response multiple fold. Two months ago we were dealing with two brain tumors, though those are toast, now we are dealing with 5 more smaller ones. The hardest news to share is that, though nothing is cast in stone, is appearing like my quirky life expectancy has been adjusted to about 2 to 6 months. Please trust that I share this with you all not to drum up a whirlwind of sympathy or onslaught of busy bee activity, but rather I hope to just share with you the profoundness of this time and the gratitude I feel to be "awake" to my great good fortune at all. Granted, a lot of this just sucks! A lot of it is such a magnificent surprise! But I hope with practice and concentration and acceptance, I...we...will find a way to find the profound and quiet beauty in many of the shared moments to come. You have all made my life so much for lovely and worth living. You have all made me feel deeply cherished, incredibly loved, especially appreciated and sometimes even funny. ~smile~ Thank you for all of that.
As before, I will be keeping my correspondences primarily via email. It is easier to keep communiques sorted and I can manage them as i have time and not feel totally overwhelmed. I will try to answer all I can, as I can. I do promise to keep you all in my thoughts and send waves of love to everyone of you for your support over the months. My family could not have managed as well without your care and the amazing attention you have shown each other as well. I am so deeply grateful. And thank you too, to the most amazing husband/cabana boy and two incredible young men to call sons, a woman could ever ask for. xoxoxo Man, they have been on one heck of a journey 0f their own and they have risen to the surreal occasion with grace and courage. We are truly blessed.
So, onward...you will hear from me again. All our plans for the next few days have been canceled as we are rescheduling next week and the week after with Vermullen but rest assured we will slip a note in here and there.
Much, much love to you all,
Meagan Anne
Friday, July 29, 2011
Scanxiety
It's starting. We are at T-3 days for the brain MRI and T-5 days for the results discussion with Kaplan and what to do next (some of which is dependent on if there is brain tumor activity and some of which is independent). It's pretty difficult to explain to Meagan the "what-ifs" because she has a hard time following it and because it gets scary and goes down the dark road she'd rather not visit. So it's a delicate balance to respond to her questions with enough information to be useful but not tip her over the emotional edge.
For example, yesterday she asked, "if they find a brain tumor they will just zap it, right?". Well, the answer is not quite that simple:
1. If there are 1-3 isolated and contained tumors - that's probably correct - they can use the Cyberknife radiation treatment.
2. But it depends on location - if it's locally recurrent (i.e., where the tumors were initially) - and they've come back even though that area was previously irradiated, it means they are probably radiation resistant (something melanoma is notorious for) and it may not do any good and may cause more brain function loss to do the treatment.
3. If they are in different locations, it still may be possible, but if they are in critical brain function areas, the resulting radiation treatment impact (as they go after margin, not just the tumor) could be highly detrimental to brain function. Which impacts remaining quality of life.
4. If there are more than 3-4 tumors, they probably wouldn't do Cyberknife. Then the only alternative is whole brain radiation. That has not proven very effective, and there is no clear advantage to doing that to gain life extension over just using steroids (because if this is the case, it's all about managing quality of life) and it can cause a lot of negative side effects (like dementia).
5. Even if the scans are clean it doesn't really mean anything in terms of the disease outcome in the brain other than we've gained a few months (which is still quite valuable!!). It is still there, it never gets wiped out completely, it's just laying low. Melanoma has a propensity to be capricious and sudden; you can be clean as a whistle one month and then one month later have ten tumors.
So we are walking a fine line, again. She wants to know a little, but not go too far. Kaplan will have to be the one that lays out some of this based on the results. And she may not want to play the "what-if" game - but just deal with the situation as it becomes concrete. So if over the next 3-5 days she asks more questions, I will probably just defer, and find ways to comfort her over the scanxiety without addressing the potential outcomes.
For example, yesterday she asked, "if they find a brain tumor they will just zap it, right?". Well, the answer is not quite that simple:
1. If there are 1-3 isolated and contained tumors - that's probably correct - they can use the Cyberknife radiation treatment.
2. But it depends on location - if it's locally recurrent (i.e., where the tumors were initially) - and they've come back even though that area was previously irradiated, it means they are probably radiation resistant (something melanoma is notorious for) and it may not do any good and may cause more brain function loss to do the treatment.
3. If they are in different locations, it still may be possible, but if they are in critical brain function areas, the resulting radiation treatment impact (as they go after margin, not just the tumor) could be highly detrimental to brain function. Which impacts remaining quality of life.
4. If there are more than 3-4 tumors, they probably wouldn't do Cyberknife. Then the only alternative is whole brain radiation. That has not proven very effective, and there is no clear advantage to doing that to gain life extension over just using steroids (because if this is the case, it's all about managing quality of life) and it can cause a lot of negative side effects (like dementia).
5. Even if the scans are clean it doesn't really mean anything in terms of the disease outcome in the brain other than we've gained a few months (which is still quite valuable!!). It is still there, it never gets wiped out completely, it's just laying low. Melanoma has a propensity to be capricious and sudden; you can be clean as a whistle one month and then one month later have ten tumors.
So we are walking a fine line, again. She wants to know a little, but not go too far. Kaplan will have to be the one that lays out some of this based on the results. And she may not want to play the "what-if" game - but just deal with the situation as it becomes concrete. So if over the next 3-5 days she asks more questions, I will probably just defer, and find ways to comfort her over the scanxiety without addressing the potential outcomes.
Thursday, July 28, 2011
Pillow Talk - it ain't what it used to be...
We've kind of developed a pattern. Usually I get up pretty early in the morning - between 4:30 and 5:00a.m. I have coffee, take care of the dogs, read the news and then do a lot of thinking and some writing. Meagan is up anywhere between 6:00 and 7:30a.m. After she gets settled we usually talk - mostly about her disease and a lot about how its going, what is upcoming, the boys, then about her appointments she's scheduled (that's when I typically find out about where I need to take her - sometimes with more advance warning than others), and what she needs to do that day in terms of timing to get ready and who is coming and what boy's schedule is and what I am doing. Usually not many tears, unless we get into some rough territory. But the medications she had the night before have worn off and she is typically in pretty good form, feeling reasonably sharp and capable of handling the situation. When she finishes breakfast and takes her medications - around 9:00a.m., she starts noticing the mental sharpness change right away. The mood changes don't kick in until later.
She has noticed feeling more loopy around 3:00p.m. We went for a walk around then yesterday and she could really feel it - it could be the Temodar side effect or it could be fatigue - she took a nap after we got home and during the evening said she didn't feel quite as loopy. So we will play around a bit with naps and see if that helps. She does not like at all that feeling and is quite concerned about her mind - her self image is built around being a sharp, intelligent and quick witted human being.
Which brings us to pillow talk - that time of the day when couples usually connect and bond. We used to do that. Now, mostly, it is about tears and fears. Last night was a good example. It started off with lots of tears around the fear of losing her mind - and I'm not talking about just the effects of the medication or the after effects of the surgery and radiation to-date. That's bad enough - she has a very difficult time reading, which for an avid reader like her is quite distressing. She is also quite aware of how much time it is taking her to do things - as simple as making some decaf coffee in our french press - she spun for 20 minutes trying to figure it out and couldn't remember how much coffee to put in or how it all worked. But it's also about the very real fear and probability of losing more brain function in the future either due to having to zap a new tumor(s) and the surrounding margin area, or of having so many new brain tumors that they can't be zapped and having the impingement on the healthy grey matter affect her cognitive capability even more. That alone is enough to cause anyone to be upset. But especially to her.
That of course leads to talk about how much time is left, the quality of that time, how the boys and I will cope, her anguish that she is causing us and other loved ones so much heartache because of her disease (classic Meagan...worrying about others), and worried about her legacy and how her precious things will be handled. Pretty heavy stuff for pillow time, with lots of tears. I comfort and reassure or provide explanations as best I can, hold her close, and eventually it sort of ends from sheer emotional exhaustion. Sleep eventually comes - but it's not as if that kind of talk generates sweet dreams. And it certainly doesn't generate the kind of intimacy and connectedness that pillow talk is supposed to. It serves a different function now - one that is likely very helpful to her. But not so much for me. Such is the reality of dealing with a terminal cancer.
She has noticed feeling more loopy around 3:00p.m. We went for a walk around then yesterday and she could really feel it - it could be the Temodar side effect or it could be fatigue - she took a nap after we got home and during the evening said she didn't feel quite as loopy. So we will play around a bit with naps and see if that helps. She does not like at all that feeling and is quite concerned about her mind - her self image is built around being a sharp, intelligent and quick witted human being.
Which brings us to pillow talk - that time of the day when couples usually connect and bond. We used to do that. Now, mostly, it is about tears and fears. Last night was a good example. It started off with lots of tears around the fear of losing her mind - and I'm not talking about just the effects of the medication or the after effects of the surgery and radiation to-date. That's bad enough - she has a very difficult time reading, which for an avid reader like her is quite distressing. She is also quite aware of how much time it is taking her to do things - as simple as making some decaf coffee in our french press - she spun for 20 minutes trying to figure it out and couldn't remember how much coffee to put in or how it all worked. But it's also about the very real fear and probability of losing more brain function in the future either due to having to zap a new tumor(s) and the surrounding margin area, or of having so many new brain tumors that they can't be zapped and having the impingement on the healthy grey matter affect her cognitive capability even more. That alone is enough to cause anyone to be upset. But especially to her.
That of course leads to talk about how much time is left, the quality of that time, how the boys and I will cope, her anguish that she is causing us and other loved ones so much heartache because of her disease (classic Meagan...worrying about others), and worried about her legacy and how her precious things will be handled. Pretty heavy stuff for pillow time, with lots of tears. I comfort and reassure or provide explanations as best I can, hold her close, and eventually it sort of ends from sheer emotional exhaustion. Sleep eventually comes - but it's not as if that kind of talk generates sweet dreams. And it certainly doesn't generate the kind of intimacy and connectedness that pillow talk is supposed to. It serves a different function now - one that is likely very helpful to her. But not so much for me. Such is the reality of dealing with a terminal cancer.
Tuesday, July 12, 2011
New Territory
We are definitely on new ground, and it's pretty shaky.
There is definite frustration on Meagan's part - about not wanting to be a problem. It's quite heart wrenching at times - she knows she doesn't have her full, usual faculties, and maybe won't ever again, but knows enough to remember what it was like. She does not like being loopy or forgetful. But because she forgets, she does have to ask a lot of questions and/or repetitive questions, or the same questions on successive days - it can make the responder a bit impatient. If the questions are particularly sensitive for one of the boys - it can be even more challenging as they probably didn't want to answer it the first time let alone the second. I think we've all upped our patience level, me by an exponential factor - but we aren't perfect and sometimes it shows. Meagan still retains her highly attuned sense of people's emotional state, so she senses when we are frustrated or impatient with her (and sometimes doesn't know why, so when we have to explain it's like being asked the same thing a third time...) and that upsets her because she doesn't want to be a problem.
I've actually encouraged her to not ask the boys so many questions - as is her usual style to draw them out (or anyone else for that matter) and talk more about herself. This is hard for her too - it's not something she is accustomed to doing. But it seems to me it will produce less tension than a repetitive inquisition approach with the boys. As for me - I just need to keep doing hot yoga and exercise and relax. Yesterday, after I drove her to her therapist's appointment we had a few errands to run and I thought we we had a list and I thought we were going to swoop in and swoop out. Well, we got to one place where we had two items to get, but she lost the list and couldn't find it. I knew the first thing and got it, but didn't ever see the list so didn't know what was on it. She couldn't remember. So her strategy was to wander each aisle until she discovered what she needed. What I should have done was gotten out my iPhone and read the news and played Scrabble until she figured it out. Instead I tried to be helpful (not!) by wandering with her after a bit trying to prod her about what it might be. My agenda was getting out of there - hers was about discovery. Different expectations equals frustration on both sides.
So we agreed later (after a teary and emotional conversation - which most are after things like this - the meds still affect her a lot) - set expectation, make sure we have the list if we are going together, and because she can't drive and I need to do the errands and she is with me, we can't always do it my way. Browsing and shopping without an agenda is in her blood and I have to respect that and give her the opportunity to do that - or let her explore that need with someone else!
There is definite frustration on Meagan's part - about not wanting to be a problem. It's quite heart wrenching at times - she knows she doesn't have her full, usual faculties, and maybe won't ever again, but knows enough to remember what it was like. She does not like being loopy or forgetful. But because she forgets, she does have to ask a lot of questions and/or repetitive questions, or the same questions on successive days - it can make the responder a bit impatient. If the questions are particularly sensitive for one of the boys - it can be even more challenging as they probably didn't want to answer it the first time let alone the second. I think we've all upped our patience level, me by an exponential factor - but we aren't perfect and sometimes it shows. Meagan still retains her highly attuned sense of people's emotional state, so she senses when we are frustrated or impatient with her (and sometimes doesn't know why, so when we have to explain it's like being asked the same thing a third time...) and that upsets her because she doesn't want to be a problem.
I've actually encouraged her to not ask the boys so many questions - as is her usual style to draw them out (or anyone else for that matter) and talk more about herself. This is hard for her too - it's not something she is accustomed to doing. But it seems to me it will produce less tension than a repetitive inquisition approach with the boys. As for me - I just need to keep doing hot yoga and exercise and relax. Yesterday, after I drove her to her therapist's appointment we had a few errands to run and I thought we we had a list and I thought we were going to swoop in and swoop out. Well, we got to one place where we had two items to get, but she lost the list and couldn't find it. I knew the first thing and got it, but didn't ever see the list so didn't know what was on it. She couldn't remember. So her strategy was to wander each aisle until she discovered what she needed. What I should have done was gotten out my iPhone and read the news and played Scrabble until she figured it out. Instead I tried to be helpful (not!) by wandering with her after a bit trying to prod her about what it might be. My agenda was getting out of there - hers was about discovery. Different expectations equals frustration on both sides.
So we agreed later (after a teary and emotional conversation - which most are after things like this - the meds still affect her a lot) - set expectation, make sure we have the list if we are going together, and because she can't drive and I need to do the errands and she is with me, we can't always do it my way. Browsing and shopping without an agenda is in her blood and I have to respect that and give her the opportunity to do that - or let her explore that need with someone else!
Thursday, July 7, 2011
Can't get much more eloquent than this...
Dear Loved Ones,
I hope this finds you all well and settling into the lazy days of summer. This is such a wonderful time when life feels expansive and we stretch beyond our cozy in door routines to embrace new travels and adventures. Somehow our lives feel lighter and more on the cusp of such a wide array of possibility. Quite exciting time. ~smile~ I am taking this time to pass along some tough news and am going to trust that you all will find a way to accept and support each other. After meeting with Kaplan yesterday, it is looking very likely that the odds of coming out of this health challenge on the other side is relatively slim. After profound discussions with my family, we are committed to keeping open minds while still acknowledging odds of a lengthy survival are not good. As a result, our focus will likely will shift to the importance of quality of life. My men and I are all on the same page on this one. We don't know what kind of timing we are talking about. I continue to feel good and strong while still acknowledging subtle little changes that indicate my condition continues to progress.
Today, I start a low dose of chemo. Expectations regarding efficacy are low but can buy some time. It would be wonderful to share another holiday with you all and just move through a full year appreciative of every moment and opportunity to express my love and gratitude to you all for supporting me in building a life well lived. Thank you so so much. As we move forward, it is my intention to quiet my schedule down a little in order to find time to write in the journals I started for the kids years ago, to spend meaningful moments with my close friends and family, sit in wonder and appreciation at our great good fortune, and savor all the meaningfulness that is possible. I have visions of this being a profound and meaningful, nourishing and positive time. I hope it is not defined as primarily sad but glorious and reflective of a life well lived. ~smile~with sparkles, and colours and hearty laughter accompanied with big hugs where that squeeze is hearty and cannot be confused with a polite brush but wussy brush agains the cheek. Really squeeze. I'm giving you permission.
So, that's that. It is my intention to keep my appointments that are already on the calendar yet ease back after that. I am not going pack my days and social calendar as I have in the past but know that I carry each of you with gratitude in my heart and truly appreciate and love what each of you has contributed to my family's journey. I will try to keep in touch via email but will likely keep the visits down. The love meter stays high, though. ~smile~
Thank you, thank you, thank you all. One woman could not ask for more wonderful and live sustaining friends and family. You've helped make this a journey I wouldn't trade for the world. ~smile~
So much love to you all,
With so much love,
Meagan
I hope this finds you all well and settling into the lazy days of summer. This is such a wonderful time when life feels expansive and we stretch beyond our cozy in door routines to embrace new travels and adventures. Somehow our lives feel lighter and more on the cusp of such a wide array of possibility. Quite exciting time. ~smile~ I am taking this time to pass along some tough news and am going to trust that you all will find a way to accept and support each other. After meeting with Kaplan yesterday, it is looking very likely that the odds of coming out of this health challenge on the other side is relatively slim. After profound discussions with my family, we are committed to keeping open minds while still acknowledging odds of a lengthy survival are not good. As a result, our focus will likely will shift to the importance of quality of life. My men and I are all on the same page on this one. We don't know what kind of timing we are talking about. I continue to feel good and strong while still acknowledging subtle little changes that indicate my condition continues to progress.
Today, I start a low dose of chemo. Expectations regarding efficacy are low but can buy some time. It would be wonderful to share another holiday with you all and just move through a full year appreciative of every moment and opportunity to express my love and gratitude to you all for supporting me in building a life well lived. Thank you so so much. As we move forward, it is my intention to quiet my schedule down a little in order to find time to write in the journals I started for the kids years ago, to spend meaningful moments with my close friends and family, sit in wonder and appreciation at our great good fortune, and savor all the meaningfulness that is possible. I have visions of this being a profound and meaningful, nourishing and positive time. I hope it is not defined as primarily sad but glorious and reflective of a life well lived. ~smile~with sparkles, and colours and hearty laughter accompanied with big hugs where that squeeze is hearty and cannot be confused with a polite brush but wussy brush agains the cheek. Really squeeze. I'm giving you permission.
So, that's that. It is my intention to keep my appointments that are already on the calendar yet ease back after that. I am not going pack my days and social calendar as I have in the past but know that I carry each of you with gratitude in my heart and truly appreciate and love what each of you has contributed to my family's journey. I will try to keep in touch via email but will likely keep the visits down. The love meter stays high, though. ~smile~
Thank you, thank you, thank you all. One woman could not ask for more wonderful and live sustaining friends and family. You've helped make this a journey I wouldn't trade for the world. ~smile~
So much love to you all,
With so much love,
Meagan
Friday, July 1, 2011
Reality Bites
The gravity of the situation is sinking in. We had a long family "discussion" last night. Suffice to say someone was pretty teary. Actually more than teary. The boys were incredible. The focus became more about how do you live each day with meaning, and make sure you do, say, instruct, and write everything you need to no matter how much time you have left. It's something we all should do, because you never know.
Meagan realizes now that she is not likely going to beat this thing. It's likely not a matter of if, but when. Having some emerging options shut down certainly generated the discussion. It doesn't mean we aren't going to pursue every logical treatment possible. It does mean we will have the discussion about treatment benefits and impacts, including quality of life.
Nothing has changed in terms of new information. We really don't know how the disease is progressing and won't have a picture until sometime mid-July. But she does now understand that melanoma going to the brain is bad. Strokes caused by tumors bursting is bad. Even though in the past she has explicitly not wanted to discuss prognosis, she now realizes given where it is and how it has presented, (and she certainly knows it's growing because she has tumors on her skin she can see growing), and that remaining treatments don't have a very good track record, that it's likely a battle and war that won't go her way.
So there has been a definite mental and emotional shift. We certainly don't want everyone lining up like it's her final days, we really don't know how long she has and it could be quite a long time - and maybe a miracle will happen. I also want to give her the respect she deserves and let her handle this with each person individually, however she so chooses, so please, even though I am disclosing this, "keep calm, carry on".
She is going to manage her schedule and activities, it's just that the priorities might change. She's probably not going to worry too much about organizing the linens. She will prioritize based not on the expectation or hope that something will work, but that time is maybe more limited. So I expect to see her in her studio more, and expect her calendar to be a bit more full.
As to all the boys, we are of a common mind to support her in whatever way she needs, and told her she doesn't need to do anything alone. We are beside her every step of the way, for as long as that journey is, even if it is for quite a while longer, or not. We aren't walking around with the cloud of doom over our heads - even though it is of course immensely sad and unfair. But we've had time to adjust and think and talk about this possibility for a lot longer than she has. So our focus with her is about quality of life, meaning, and showing her the love.
Meagan realizes now that she is not likely going to beat this thing. It's likely not a matter of if, but when. Having some emerging options shut down certainly generated the discussion. It doesn't mean we aren't going to pursue every logical treatment possible. It does mean we will have the discussion about treatment benefits and impacts, including quality of life.
Nothing has changed in terms of new information. We really don't know how the disease is progressing and won't have a picture until sometime mid-July. But she does now understand that melanoma going to the brain is bad. Strokes caused by tumors bursting is bad. Even though in the past she has explicitly not wanted to discuss prognosis, she now realizes given where it is and how it has presented, (and she certainly knows it's growing because she has tumors on her skin she can see growing), and that remaining treatments don't have a very good track record, that it's likely a battle and war that won't go her way.
So there has been a definite mental and emotional shift. We certainly don't want everyone lining up like it's her final days, we really don't know how long she has and it could be quite a long time - and maybe a miracle will happen. I also want to give her the respect she deserves and let her handle this with each person individually, however she so chooses, so please, even though I am disclosing this, "keep calm, carry on".
She is going to manage her schedule and activities, it's just that the priorities might change. She's probably not going to worry too much about organizing the linens. She will prioritize based not on the expectation or hope that something will work, but that time is maybe more limited. So I expect to see her in her studio more, and expect her calendar to be a bit more full.
As to all the boys, we are of a common mind to support her in whatever way she needs, and told her she doesn't need to do anything alone. We are beside her every step of the way, for as long as that journey is, even if it is for quite a while longer, or not. We aren't walking around with the cloud of doom over our heads - even though it is of course immensely sad and unfair. But we've had time to adjust and think and talk about this possibility for a lot longer than she has. So our focus with her is about quality of life, meaning, and showing her the love.
Saturday, June 18, 2011
A Tough Day Emotionally
While there were some very enjoyable times for Meagan yesterday, there were also some considerable lows. The cancer books don't tell you too much about how to deal with these situations so you have to make it up as you go along, trust your instinct and hope like hell your response is helpful.
I used to think the two hardest general questions were: "what is the meaning of life?"; and, "what is my purpose?". Tolstoy, in his book The Three Questions, had it like this: When is the best time to do things? Who is the most important one? What is the right thing to do?".
Boy, was I wrong, and so was Tolstoy. I heard the two hardest questions yesterday,
"Is there any hope for me?"
"When can I be your partner again and not your charge?" Typically followed by, "do you still love me?".
Usually questions like these come from left field, so I am not fully prepared intellectually or emotionally to address them. I do think my instincts are pretty good, so my first reaction is to simply hold her, because an immediate answer is not aways required. The questions are clearly asked out of fear and insecurity and sometimes the best answer is to provide the comfort of being there and holding her to assure her she is not alone in this battle.
I hope you all know what my answers are. It's not necessarily the words that are important though, but the conviction and sincerity with which you say them. It's especially challenging when she is fragile due to her medication - no fault of hers at all. The easiest one to answer is the "do you still love me?" question. That requires a quick, certain, sure, forceful response. Along with a reassuring long hug.
"Is there any hope for me?" is a little tougher - not because of my response ("of course there is hope") but because of the cognitive dissonance within me. If I answered, "I don't know", which is probably more along the lines of what I actually think (given what I know about this disease and it's typical progression and the best drug developed in decades for the disease which didn't work for her, and the metastasis to the brain), it would generate a response which, suffice to say, would not be all that helpful. So sometimes one answers with a response based not on what you might think, but what that person needs to hear - to keep them going, positive, hopeful and able to cope. That's when your role as a caregiver kicks in - to provide emotional support and not necessarily answer the question asked.
The other one is tougher. My response is that this is just a phase and our normal balance will be restored. The job of any partner is to support their significant other in sickness and in health - right? I tend to focus on the technical aspects - the medication schedule and tapering which will improve her cognitive ability, at least to post-stroke condition. And reassure her that notwithstanding the caregiving aspect, she is my partner and does provide me reciprocal benefits. I know she is frustrated at not being able to care for me or do the things that a partner does, and is trying to find ways to do it to the best of her abilities, such as making a list of all the movies we need to see this summer. But the reality of the situation does make it a tough question. It's been a year now since her first diagnosis of malignant cancer and ten months since her diagnosis of metastatic melanoma. And it has been a downhill slide the whole time (physically and cognitively), with no real end in sight. And the situations keep getting more and more severe. It's one thing to take her to a scheduled partial mastectomy, it's quite another to rush her to emergency and have her undergo brain surgery and come out with a loss of function. Our non-emergency days become focused on medication schedule and ensuring she gets them, future medical appointments, discussing scenarios (when is my next treatment and what is it), being her social secretary (although she is slowly trying to take that back), and making sure she is safe and cared for. And that does change the nature of the relationship. And I'm not sure it's really temporary.
So this is another instance where you put the best interest of the questioner at heart. It's the right thing to do. But it's not the most satisfying answer internally and it raises more questions internally. While the advice I give her pretty consistently about the disease in general is sound (focus on one treatment at a time, live in the moment, enjoy life for what it offers today) - it's not always advice I can practice myself. So in the wee hours, I do spend a lot of time wondering where this all goes.
I used to think the two hardest general questions were: "what is the meaning of life?"; and, "what is my purpose?". Tolstoy, in his book The Three Questions, had it like this: When is the best time to do things? Who is the most important one? What is the right thing to do?".
Boy, was I wrong, and so was Tolstoy. I heard the two hardest questions yesterday,
"Is there any hope for me?"
"When can I be your partner again and not your charge?" Typically followed by, "do you still love me?".
Usually questions like these come from left field, so I am not fully prepared intellectually or emotionally to address them. I do think my instincts are pretty good, so my first reaction is to simply hold her, because an immediate answer is not aways required. The questions are clearly asked out of fear and insecurity and sometimes the best answer is to provide the comfort of being there and holding her to assure her she is not alone in this battle.
I hope you all know what my answers are. It's not necessarily the words that are important though, but the conviction and sincerity with which you say them. It's especially challenging when she is fragile due to her medication - no fault of hers at all. The easiest one to answer is the "do you still love me?" question. That requires a quick, certain, sure, forceful response. Along with a reassuring long hug.
"Is there any hope for me?" is a little tougher - not because of my response ("of course there is hope") but because of the cognitive dissonance within me. If I answered, "I don't know", which is probably more along the lines of what I actually think (given what I know about this disease and it's typical progression and the best drug developed in decades for the disease which didn't work for her, and the metastasis to the brain), it would generate a response which, suffice to say, would not be all that helpful. So sometimes one answers with a response based not on what you might think, but what that person needs to hear - to keep them going, positive, hopeful and able to cope. That's when your role as a caregiver kicks in - to provide emotional support and not necessarily answer the question asked.
The other one is tougher. My response is that this is just a phase and our normal balance will be restored. The job of any partner is to support their significant other in sickness and in health - right? I tend to focus on the technical aspects - the medication schedule and tapering which will improve her cognitive ability, at least to post-stroke condition. And reassure her that notwithstanding the caregiving aspect, she is my partner and does provide me reciprocal benefits. I know she is frustrated at not being able to care for me or do the things that a partner does, and is trying to find ways to do it to the best of her abilities, such as making a list of all the movies we need to see this summer. But the reality of the situation does make it a tough question. It's been a year now since her first diagnosis of malignant cancer and ten months since her diagnosis of metastatic melanoma. And it has been a downhill slide the whole time (physically and cognitively), with no real end in sight. And the situations keep getting more and more severe. It's one thing to take her to a scheduled partial mastectomy, it's quite another to rush her to emergency and have her undergo brain surgery and come out with a loss of function. Our non-emergency days become focused on medication schedule and ensuring she gets them, future medical appointments, discussing scenarios (when is my next treatment and what is it), being her social secretary (although she is slowly trying to take that back), and making sure she is safe and cared for. And that does change the nature of the relationship. And I'm not sure it's really temporary.
So this is another instance where you put the best interest of the questioner at heart. It's the right thing to do. But it's not the most satisfying answer internally and it raises more questions internally. While the advice I give her pretty consistently about the disease in general is sound (focus on one treatment at a time, live in the moment, enjoy life for what it offers today) - it's not always advice I can practice myself. So in the wee hours, I do spend a lot of time wondering where this all goes.
Saturday, June 4, 2011
The Four Things That Matter Most
I'm reading a short book with the title, "The Four Things That Matter Most", by Ira Byock, M.D.
The Four Things are words one should say, really at any time within our life, to anyone we care about:
Please forgive me
I forgive you
Thank you
I love you
There is a short passage in it that really struck me, so much so I thought I'd share it:
"What we can do, from this moment forward, is live life as authentically as possible. This means removing the mask we use to protect ourselves from the world, and from truly being seen by others. It means encountering others and the world with honesty, without pretense or ulterior motives. The psychological mask and emotional armor we wear to protect ourselves from hurt diminishes the integrity and intensity of our lives. When we are willing to allow others to see us as we are and when we trust our clear, good intentions and reflect them in our words and deeds, we are authentically ourselves. In so doing, we need never have regrets".
The Four Things are words one should say, really at any time within our life, to anyone we care about:
Please forgive me
I forgive you
Thank you
I love you
There is a short passage in it that really struck me, so much so I thought I'd share it:
"What we can do, from this moment forward, is live life as authentically as possible. This means removing the mask we use to protect ourselves from the world, and from truly being seen by others. It means encountering others and the world with honesty, without pretense or ulterior motives. The psychological mask and emotional armor we wear to protect ourselves from hurt diminishes the integrity and intensity of our lives. When we are willing to allow others to see us as we are and when we trust our clear, good intentions and reflect them in our words and deeds, we are authentically ourselves. In so doing, we need never have regrets".
Sunday, May 22, 2011
Guess Who is Tired (Again) This Morning...
I've pretty much gotten used to not getting much sleep. Whether from anxiety or the hospital stay or our pill schedule or road trips I've taken recently - a solid through the night sleep is so rare an event I can't remember when it last occurred. So most days I need to do a power nap at some point - hardly full compensation - but helpful and I am oh so grateful that I have the freedom and flexibility to pull it off.
When the boys were teens and old enough to drive and stay out late there was a chunk of years we didn't get a lot of uninterrupted sleep - especially on the weekends or summers when they were home from college. I'd refer to it as living with vampires. It is with that in mind that we have begun rejiggering our house sleeping arrangements and done a small remodel to set the south side of the house up as the young men's wing. Both Riley and Casey will sleep on that side and be able to come and go out the south side entrance door - thus saving Meagan and me from waking up at 2:00a.m. when the party shows up at the MacPhee boy's house. We are extremely happy they have chosen to live at home, for now, even though it is driven largely by the circumstances around Meagan's disease. Their lives have been altered and future plans a bit up in the air - but being here and close to their Mom is a good thing.
Aside from the housing arrangements, it's also led to a number of discussions. Last night was one of the best nights, if not for the lack of sleep, I've had. Because Casey couldn't sleep last night and wanted to talk. So I got the 12:30a.m. wakeup knock and we sat by the fire and talked until 3:30a.m. Wide ranging and philosophical, intelligent and thoughtful conversation. I loved every minute of it. Wouldn't trade it for anything. One of the "gifts" cancer brings. But oh am I tired this morning. Being a cancer cabana boy means you have a wide ranging set of responsibilities, including a big set of ones around your progeny.
And I promised Meagan I would take her to a chick-flick today - her first movie since before the stroke. "Bridesmaids". I had better take a nap beforehand, otherwise I may not make it through the movie and be able to talk about it afterwards.
When the boys were teens and old enough to drive and stay out late there was a chunk of years we didn't get a lot of uninterrupted sleep - especially on the weekends or summers when they were home from college. I'd refer to it as living with vampires. It is with that in mind that we have begun rejiggering our house sleeping arrangements and done a small remodel to set the south side of the house up as the young men's wing. Both Riley and Casey will sleep on that side and be able to come and go out the south side entrance door - thus saving Meagan and me from waking up at 2:00a.m. when the party shows up at the MacPhee boy's house. We are extremely happy they have chosen to live at home, for now, even though it is driven largely by the circumstances around Meagan's disease. Their lives have been altered and future plans a bit up in the air - but being here and close to their Mom is a good thing.
Aside from the housing arrangements, it's also led to a number of discussions. Last night was one of the best nights, if not for the lack of sleep, I've had. Because Casey couldn't sleep last night and wanted to talk. So I got the 12:30a.m. wakeup knock and we sat by the fire and talked until 3:30a.m. Wide ranging and philosophical, intelligent and thoughtful conversation. I loved every minute of it. Wouldn't trade it for anything. One of the "gifts" cancer brings. But oh am I tired this morning. Being a cancer cabana boy means you have a wide ranging set of responsibilities, including a big set of ones around your progeny.
And I promised Meagan I would take her to a chick-flick today - her first movie since before the stroke. "Bridesmaids". I had better take a nap beforehand, otherwise I may not make it through the movie and be able to talk about it afterwards.
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