So far I have been doing well with slowing down on posting. I ended up taking a bit of a break from my writing to focus on Christmas and whatnot with the holidays coming up. That has worked out pretty well. I feel like I decompressed a bit, and I think I'm ready to start work on some of my bigger projects.
A month out. I can hardly believe it.
As much as we think, in those moments of pain and loss, that we will never move past it, we do. We might not actively move forward for some time, but time keeps moving on. The wheel continues to grind forward, pushed ever on by enseen hands, and those sharp seeds are crumbled down as it passes over and over in it's travel.
You wake up one day and find that you can start taking steps again. I've been back to work a little over a week now, and that's going well. It is restoring that sense of normalcy I'd been looking for for so long. It's funny, but the hardest part of my day is when I walk out to the car and check my phone.
I find that I'm expecting to see a message from Robin, but it isn't there, it won't be there. It usually take a moment for everything to register, and it does. There is that pang of sadness, like the one I'm having while I write this, but I usually just take a deep breath, and finish what I was doing.
I keep getting asked at work why I'm back so soon. I look at the calendar, and it was almost a month before I came back. I had been off almost a month before she died as well. I guess what I'm saying, is to me, it felt like a much longer time. Add to that the sense of guilty relief that comes when someone who has been sick for a while passes on, and to me it felt like a lot longer stretch of time. It felt as if months passed.
You might ask what I mean by guilty relief, but I can't think of a better way to put it. Robin was sick for a year, and I had to watch her slowly die. At the end, she had lost so much, and I knew it was a relief for her. It was a relief for us as well. But you feel guilty. You feel guilty for feeling glad that it's over. But in the end, you start to get rid of that guilt, when you realize that it's alright to have that sense of relief. It was a long, hard, painful road, but you are at the end of it. Your loved one isn't with you at the finish line, as they have moved off to the winner's circle, so you don't have them to share those feelings with.
I think you have to embrace that feeling, and it's hard to do that. We can embrace it because of Hope. We can rest on that Hope, because we know are loved ones are waiting for us with God, and someday we will join them.
Any of you who know me, know that I feel that faith is a very personal thing. It is between you and God, however you feel about Him. He is on the other side of the equation waiting on you to make a choice. No one can do it for you. That is your personal Faith. My Faith, and my inner strength, and the strength from Robin and my family and friends is what has carried me through this. Emotionally, it has been, and will be a rollercoaster. My Faith has stayed strong, though. I may have had questions, and anger, and hurt; I still do, and I'm sure I will for some time. But I still have my faith.
If I didn't, I know I wouldn't be here now, writing still. I'd rather be with her, away from the pain, but like one of my friends told me: "Your story isn't done yet. You still have shit to do."
So here we are, a month out. How do I feel about it? I'm still sad, but the wounds are beginning to scar over. I have a life to continue with, and a story to keep writing.
I have a Christmas to make spectacular for my children. And their smiles and hugs and "I love you's" make it easier to keep going.
Showing posts with label Hope. Show all posts
Showing posts with label Hope. Show all posts
Sunday, December 11, 2011
Friday, November 4, 2011
Word that Needs to Get Out
A few weeks ago, this came across my news feeds, and I talked about it. I mentioned that I had sent off an email to the researchers, and time went by. Yesterday, while Robin was in the hospital for the second time in two weeks, she made the choice to go on Hospice Care, since the chemotherapy hadn't done anything for her tumors, and we were basically out of options, as far as the Oncology team was concerned. They had a few more, more ravaging drugs they could try, but they said it probably wouldn't do anything, and they didn't want to put Robin through more pain needlessly.
So yesterday and today were spent in trying to collect my mind and figure out where we were going from here. There are a lot of homeopathic, folk, natural remedies; literally thousands. I think there are a few we are going to try once Robin has gotten her strength back, but for the most part, I don't have to much hope in many of them. It's kind of like diet pills and penis growing pills, if there was one that really worked, everyone would know. It would certainly narrow the field down from the thousands that are currently out there.
Then, this morning I got an email from Dr. Craig Meyers. He said they are hoping to go to clinical trials very soon, but funding has been a huge problem for them. So, that was discouraging, but then I thought, what can I do about it? I decided I could write about it. I could try to get the word out.
There is huge promise in this. First, it looks like it works, which is a big thing compared to most chemo, which seems to be a lot like flipping a coin. The only thing you get to be really sure of, is that you are going to have pain from it. It is a fact that most chemo destroys healthy cells, since they target fast-growing cells, like cancer, hair follicles and mucus membranes.
That leads to the second point they mentioned, so far, it seems to be leaving healthy cells alone. That would be a good thing. One of the hardest things I have had the pleasure of doing through all this, is watching Robin writhe through the joint pain, or suffer through the extreme nausea and body aches from the chemo. It's bad enough that you have to endure the pain from the cancer eating away at your body, but then dealing with that on top of it? And then all the drugs that counter the nausea and the drugs that counter the damage to your blood counts cause pain too. So a treatment that didn't cause damage and pain to the rest of your body? That would be good.
You would wonder why funding would be so hard to come by when a possible treatment shows so much promise? I wonder. The only conclusion that I can come to is that there is no real money to be made in it. I mean, with all the chemo, and the radiation, and the assorted other drugs that come with it, our insurance has paid out hundreds of thousands of dollars. And that is not an exaggeration. One of the itemized bills I looked at today was originally for 154,000. Granted, the insurance only paid out 16,000. It adds up, and it really makes me wonder what people who don't have insurance do. Die? Yet another spot that a real cure would benefit so many. But they are having funding problems.
In this day and age, we can give an old man an erection, even if he is far past the age of really needing to worry about having one. We try to cover everything with different drugs, but tend to miss the idea of curing. We treat. Having the chance to find a cure is amazing, and there shouldn't be funding problems. But there are.
The reason I am so adamant in getting funding for Dr. Meyers and the rest of the lab at Penn State Hershey to continue their research, is that I'm not looking forward to watching my wife die. This past year has been the hardest one in my life.
This time last year we were planning our last hiking excursion for the year before the snows set in. The baby was nine months old, and we were waiting to be told it was a cyst. Because young women don't get breast cancer like this.
But here we are. Not even a year later. My wife lost her breasts, her uterus, her ability to walk well, her comfort, and her hair several times. The amount of pain I have had to watch her go through, and I would love for others not to have to go through that. I'd love to not see Robin have to continue this way.
I don't want to sit here and watch my wife die. There is hope in these oncolytic treatments, how much hope, we don't know yet, but it is promising.
So yesterday and today were spent in trying to collect my mind and figure out where we were going from here. There are a lot of homeopathic, folk, natural remedies; literally thousands. I think there are a few we are going to try once Robin has gotten her strength back, but for the most part, I don't have to much hope in many of them. It's kind of like diet pills and penis growing pills, if there was one that really worked, everyone would know. It would certainly narrow the field down from the thousands that are currently out there.
Then, this morning I got an email from Dr. Craig Meyers. He said they are hoping to go to clinical trials very soon, but funding has been a huge problem for them. So, that was discouraging, but then I thought, what can I do about it? I decided I could write about it. I could try to get the word out.
There is huge promise in this. First, it looks like it works, which is a big thing compared to most chemo, which seems to be a lot like flipping a coin. The only thing you get to be really sure of, is that you are going to have pain from it. It is a fact that most chemo destroys healthy cells, since they target fast-growing cells, like cancer, hair follicles and mucus membranes.
That leads to the second point they mentioned, so far, it seems to be leaving healthy cells alone. That would be a good thing. One of the hardest things I have had the pleasure of doing through all this, is watching Robin writhe through the joint pain, or suffer through the extreme nausea and body aches from the chemo. It's bad enough that you have to endure the pain from the cancer eating away at your body, but then dealing with that on top of it? And then all the drugs that counter the nausea and the drugs that counter the damage to your blood counts cause pain too. So a treatment that didn't cause damage and pain to the rest of your body? That would be good.
You would wonder why funding would be so hard to come by when a possible treatment shows so much promise? I wonder. The only conclusion that I can come to is that there is no real money to be made in it. I mean, with all the chemo, and the radiation, and the assorted other drugs that come with it, our insurance has paid out hundreds of thousands of dollars. And that is not an exaggeration. One of the itemized bills I looked at today was originally for 154,000. Granted, the insurance only paid out 16,000. It adds up, and it really makes me wonder what people who don't have insurance do. Die? Yet another spot that a real cure would benefit so many. But they are having funding problems.
In this day and age, we can give an old man an erection, even if he is far past the age of really needing to worry about having one. We try to cover everything with different drugs, but tend to miss the idea of curing. We treat. Having the chance to find a cure is amazing, and there shouldn't be funding problems. But there are.
The reason I am so adamant in getting funding for Dr. Meyers and the rest of the lab at Penn State Hershey to continue their research, is that I'm not looking forward to watching my wife die. This past year has been the hardest one in my life.
This time last year we were planning our last hiking excursion for the year before the snows set in. The baby was nine months old, and we were waiting to be told it was a cyst. Because young women don't get breast cancer like this.
But here we are. Not even a year later. My wife lost her breasts, her uterus, her ability to walk well, her comfort, and her hair several times. The amount of pain I have had to watch her go through, and I would love for others not to have to go through that. I'd love to not see Robin have to continue this way.
I don't want to sit here and watch my wife die. There is hope in these oncolytic treatments, how much hope, we don't know yet, but it is promising.
Sunday, October 23, 2011
Not Done Yet
So this was one of the tough weeks. It started out well enough, Robin was still having pain, but it seemed to be under control. All in all, it hadn't been too bad.
Then Thursday rolled around. I took the dog down to the vet to get her hip checked out, since it hadn't improved in a while, and it had gotten really swollen. We didn't get good news. It seems that it is pretty common with Rotties of her age to develop bone cancer, especially in light of the trauma from her hip displaysia. So, it is pretty much just keep her comfortable until the pain meds don't help anymore.
So, I stayed home from the Dojo that night, since none of the family was really in the mood for much of anything. I put the kids to bed, and then Robin started having terrible pain in her leg. Her pain meds didn't touch the pain, and she was in too much pain to stand the car ride to Geisinger, so we called an ambulance for her.
Sitting in the Emergency Room waiting for them to get her pain under control again was rough. How much healing can one do while in agony?
She hadn't had any scans done in a while, so we didn't know if the last chemo she was on had done anything. We know the radiation on her head had done something, that much we could see, but as far as the rest of her, we were in the dark. That was the worst, since we were working with something, and for whatever reason, this far along, the best idea they had was just to throw things at it, and hope to find something that works.
I'm not a doctor, but I am pretty vested in her recovery, so I think it's a little late in the game to try that. We already wasted a few months since her Breast Surgeon wanted to get good margins for her surgery, even though she kept pointing out that she wanted a double mastectomy, so the margins were basically pointless. Then, after two chemos and a few months, we found out her tumor had grown. And spread.
I'm not trying to place blame, but this was the same doctor that told her, a year ago when she had the duct removed, the one that was causing her to get blood from her nipple, his advice was that it was probably nothing. And that she should stop playing with it.
So, one of the main indicators for invasive ductal carcinoma was no big deal. It couldn't be that, because "we don't see that in young women." Once again, not trying to place blame, but if more attention had been paid a year ago, we might not be at this spot right now. I know I can't change the past, but the word needs to get out, you need to be in control of your treatment.
Don't let the Doctor's ego get in the way of your treatment. Obviously, young women do get cancer, and this is one of the main reasons young women often die from it. Young women usually get the more aggressive forms of breast cancer, but the government and big medical tell us not to worry about it. Young women rarely get breast cancer. But how many young women in Hollywood have we seen just this year? How many young women do you know yourself?
So now we are at the point we're at now. Robin is in the hospital with a blood clot in her leg, metastases in her lung, hip bones, arm, not to mention the ones that were in her head. They finally admitted that they had been doing a poor job of pain control. Not that she hadn't been telling them that for months now. Yes, a lot of chemotherapy drugs cause pain. Some of the pain is quite substantial. When you have cancer eating away at your hips in addition to it, there is probably pain.
So we finally met with the NP from Palliative Care, who specialize in treating the pain, not the actual disease. They are a tremendously underutilized specialty, since most modern medicine is only concerned with wellness, and not the state of the patient. It looks better on a resume to heal someone. The ends justify the means, so to speak.
Also, to clarify, Palliative Care is not Hospice Care. Palliative Care does not mean you are just waiting to die now, though they do come in also when it comes to that point. They are the ones who specialize in making you feel better. So, the NP we talked to told us there was no reason for her to hurt this much. There was no reason for her to be constipated all the time. These things could be treated.
She also pointed out that she would get them all together so they could really sit down and talk treatment.
So, at this point, this late in the game, it seams that Geisinger's talk of her "team" was just that. It always felt like the discussion between specialists had been poor, with the most constantly up-to-date specialist had been her Radiation Oncologist. He made it a point to always be read up on her charts, and had always talked to the other Doctors in charge of her treatment.
But where we are now, all the chemo seems to have been ineffective. Her cancer seems to be chemo resistant, something we were all starting to feel from the beginning, when her breast tumor grew to 8 cm while she was receiving the chemo. We could have monitored that better, but when we mentioned that to her Oncologists, that we felt it wad grown, he "hated to burst our bubble", but it hadn't. Even though, the surgery, when the tumor was on the table in it's disgusting, bulbous glory (Metaplastic Tumors are a horrible amalgam of different kinds of cells, like an insane stem cell), it had, in fact, grown significantly.
So now here we are, modern medicine has failed to this point. The run of the mill treatment has done very little. We had been praying that if it wasn't going to improve, that God would just take her home. He hasn't. For some reason, it is our lot to suffer. I just pray that something will come of it.
I pray that through our suffering, someone else will avoid this. I am still praying that she will be healed, or at least we will find something that works. If we find something that works, trust that we will get the word out.
I just started to contact some people who are working on some cutting edge things. I don't know what to expect; I know that actually getting to try things, things that might work, is like pulling teeth.
Remember that corporations run things. Therefore the dollar ultimately makes things happen. We have scientists out there really making strides, but they are often held back by the community and the government.
That's just the state of it. I for one, and not done yet. I am willing to make the calls and try. I am not ready to tell my children that mommy isn't coming home. I'm not ready to be a single parent.
I'm not ready to spread the ashes of my best friend and the love of my life over her favorite spot and the pond, because she doesn't want her body alone and in the dirt, at a place she doesn't want to be.
I can't blame her either. I would rather have my body someplace I love.
But either way, I'm not ready to do that.
Otherwise, if that is all we have to look forward to, God didn't do me any favors bringing me back from the War. So I trust there is more to hold out for. I trust that there is a reason we're still here pushing on.
There has to be a reason for the pain.
We're not done yet.
Fuck Cancer.
Then Thursday rolled around. I took the dog down to the vet to get her hip checked out, since it hadn't improved in a while, and it had gotten really swollen. We didn't get good news. It seems that it is pretty common with Rotties of her age to develop bone cancer, especially in light of the trauma from her hip displaysia. So, it is pretty much just keep her comfortable until the pain meds don't help anymore.
So, I stayed home from the Dojo that night, since none of the family was really in the mood for much of anything. I put the kids to bed, and then Robin started having terrible pain in her leg. Her pain meds didn't touch the pain, and she was in too much pain to stand the car ride to Geisinger, so we called an ambulance for her.
Sitting in the Emergency Room waiting for them to get her pain under control again was rough. How much healing can one do while in agony?
She hadn't had any scans done in a while, so we didn't know if the last chemo she was on had done anything. We know the radiation on her head had done something, that much we could see, but as far as the rest of her, we were in the dark. That was the worst, since we were working with something, and for whatever reason, this far along, the best idea they had was just to throw things at it, and hope to find something that works.
I'm not a doctor, but I am pretty vested in her recovery, so I think it's a little late in the game to try that. We already wasted a few months since her Breast Surgeon wanted to get good margins for her surgery, even though she kept pointing out that she wanted a double mastectomy, so the margins were basically pointless. Then, after two chemos and a few months, we found out her tumor had grown. And spread.
I'm not trying to place blame, but this was the same doctor that told her, a year ago when she had the duct removed, the one that was causing her to get blood from her nipple, his advice was that it was probably nothing. And that she should stop playing with it.
So, one of the main indicators for invasive ductal carcinoma was no big deal. It couldn't be that, because "we don't see that in young women." Once again, not trying to place blame, but if more attention had been paid a year ago, we might not be at this spot right now. I know I can't change the past, but the word needs to get out, you need to be in control of your treatment.
Don't let the Doctor's ego get in the way of your treatment. Obviously, young women do get cancer, and this is one of the main reasons young women often die from it. Young women usually get the more aggressive forms of breast cancer, but the government and big medical tell us not to worry about it. Young women rarely get breast cancer. But how many young women in Hollywood have we seen just this year? How many young women do you know yourself?
So now we are at the point we're at now. Robin is in the hospital with a blood clot in her leg, metastases in her lung, hip bones, arm, not to mention the ones that were in her head. They finally admitted that they had been doing a poor job of pain control. Not that she hadn't been telling them that for months now. Yes, a lot of chemotherapy drugs cause pain. Some of the pain is quite substantial. When you have cancer eating away at your hips in addition to it, there is probably pain.
So we finally met with the NP from Palliative Care, who specialize in treating the pain, not the actual disease. They are a tremendously underutilized specialty, since most modern medicine is only concerned with wellness, and not the state of the patient. It looks better on a resume to heal someone. The ends justify the means, so to speak.
Also, to clarify, Palliative Care is not Hospice Care. Palliative Care does not mean you are just waiting to die now, though they do come in also when it comes to that point. They are the ones who specialize in making you feel better. So, the NP we talked to told us there was no reason for her to hurt this much. There was no reason for her to be constipated all the time. These things could be treated.
She also pointed out that she would get them all together so they could really sit down and talk treatment.
So, at this point, this late in the game, it seams that Geisinger's talk of her "team" was just that. It always felt like the discussion between specialists had been poor, with the most constantly up-to-date specialist had been her Radiation Oncologist. He made it a point to always be read up on her charts, and had always talked to the other Doctors in charge of her treatment.
But where we are now, all the chemo seems to have been ineffective. Her cancer seems to be chemo resistant, something we were all starting to feel from the beginning, when her breast tumor grew to 8 cm while she was receiving the chemo. We could have monitored that better, but when we mentioned that to her Oncologists, that we felt it wad grown, he "hated to burst our bubble", but it hadn't. Even though, the surgery, when the tumor was on the table in it's disgusting, bulbous glory (Metaplastic Tumors are a horrible amalgam of different kinds of cells, like an insane stem cell), it had, in fact, grown significantly.
So now here we are, modern medicine has failed to this point. The run of the mill treatment has done very little. We had been praying that if it wasn't going to improve, that God would just take her home. He hasn't. For some reason, it is our lot to suffer. I just pray that something will come of it.
I pray that through our suffering, someone else will avoid this. I am still praying that she will be healed, or at least we will find something that works. If we find something that works, trust that we will get the word out.
I just started to contact some people who are working on some cutting edge things. I don't know what to expect; I know that actually getting to try things, things that might work, is like pulling teeth.
Remember that corporations run things. Therefore the dollar ultimately makes things happen. We have scientists out there really making strides, but they are often held back by the community and the government.
That's just the state of it. I for one, and not done yet. I am willing to make the calls and try. I am not ready to tell my children that mommy isn't coming home. I'm not ready to be a single parent.
I'm not ready to spread the ashes of my best friend and the love of my life over her favorite spot and the pond, because she doesn't want her body alone and in the dirt, at a place she doesn't want to be.
I can't blame her either. I would rather have my body someplace I love.
But either way, I'm not ready to do that.
Otherwise, if that is all we have to look forward to, God didn't do me any favors bringing me back from the War. So I trust there is more to hold out for. I trust that there is a reason we're still here pushing on.
There has to be a reason for the pain.
We're not done yet.
Fuck Cancer.
Friday, October 14, 2011
Small Miracles
Small Miracles are just as good as the big ones.
On Wednesday, Robin woke up and told me that her legs didn't hurt as bad as they had been. We didn't talk much more about it, so as not to jinx it, but we were definitely excited at the prospect of an increase in her mobility.
She said she had actually noticed it at first during the night, when she got up to go to the bathroom. I'd forgotten to bring the potty chair into the bedroom, so when she woke up, groggy, she just walked to the bathroom, and didn't think much more about it.
She still needs the cane for short distances, and the scooter for any type of long mobility, but we will take less pain. It is definitely a start, and a small miracle in my eyes.
Robin was just telling me the other day was that her mobility was what she missed the most. The pain, you can deal with. Eventually, I guess you just get used to it, and it becomes the new normal for you. The lost mobility, however, isn't as easy to deal with.
I realize it is something that I take for granted. Even with back pain, and the occasional other aches, I have no real loss of mobility, so I can't even begin to comprehend not being able to chase the kids. When I want to get up, I get up. When I have to run, I run. My legs do what I tell them to.
That's the thing she misses most. It is a loss of freedom when you really look at it. When your mobility suffers, you end up being a lot more dependent on others. And, as a very independent woman, that has been tough for Robin. We all take for granted being able to do for ourselves.
So, while she didn't "take up her bedroll and walk", getting up with significantly less pain that she had been dealing with every day is definitely a start we're happy for. Add that to the fact that the tumor on her skull is barely noticeable, and God and the chemo are definitely making things happen.
Here is to the beach next summer!
On Wednesday, Robin woke up and told me that her legs didn't hurt as bad as they had been. We didn't talk much more about it, so as not to jinx it, but we were definitely excited at the prospect of an increase in her mobility.
She said she had actually noticed it at first during the night, when she got up to go to the bathroom. I'd forgotten to bring the potty chair into the bedroom, so when she woke up, groggy, she just walked to the bathroom, and didn't think much more about it.
She still needs the cane for short distances, and the scooter for any type of long mobility, but we will take less pain. It is definitely a start, and a small miracle in my eyes.
Robin was just telling me the other day was that her mobility was what she missed the most. The pain, you can deal with. Eventually, I guess you just get used to it, and it becomes the new normal for you. The lost mobility, however, isn't as easy to deal with.
I realize it is something that I take for granted. Even with back pain, and the occasional other aches, I have no real loss of mobility, so I can't even begin to comprehend not being able to chase the kids. When I want to get up, I get up. When I have to run, I run. My legs do what I tell them to.
That's the thing she misses most. It is a loss of freedom when you really look at it. When your mobility suffers, you end up being a lot more dependent on others. And, as a very independent woman, that has been tough for Robin. We all take for granted being able to do for ourselves.
So, while she didn't "take up her bedroll and walk", getting up with significantly less pain that she had been dealing with every day is definitely a start we're happy for. Add that to the fact that the tumor on her skull is barely noticeable, and God and the chemo are definitely making things happen.
Here is to the beach next summer!
Friday, October 7, 2011
Small Breaks
This week, we had a few small breaks. Robin got her scooter, which is pretty much a Godsend. As much as it sucks to see Robin having to use a scooter to get around for any long distances, it gives us back the mobility she had been missing.
It was a little bit of a fight to get it. I think there is a certain stigma when it comes to mobility devices, since she isn't old. People expect that if you need one, it comes down to being lazy or fat. One of the things people don't consider about wheelchairs is that when you have a young family, simple things like going to the grocery store is a huge hassle.
Our oldest is ten. The middlest is four and our youngest is 20 months. I'm pushing the cart with Morgan (the youngest) in the seat, and Logan (the middlest) in the cart itself. Robin doesn't have arm the strength to push herself in a wheelchair, due to the muscle breakdown from all the chemo. Not that her chair was one she could really push anyway.
So, we were left with trying to get one of the chairs with a basket from the store, or she tried to fight through the pain and use the cart as a walker. I hated seeing her do that.
Or, I suppose we could have tried to make a train and push everyone through. Or, I suppose Meg could push the cart or the chair, but we did most of our shopping while she was at school, since my weekends are usually in the middle of the week.
Yesterday, though, we had our first outing with her scooter, and it performed really well. I can lift it into the back of the van fairly easily. It breaks down for easier lifting and storage, and it fits almost perfectly in the back of the van. To fit the scooter and groceries requires a little bit more maneuvering, but it is a small price for the benefits it gives us.
The best thing, though, is that it saves Robin from a terrific amount of pain. It seems the majority of the pain is actually a side effect from the chemo, which not everyone gets. So far Robin seems to be hitting all the 'low occourence' pain side effects. When you add that to the pain that comes from the state of her hip, it makes her pretty much housebound.
So, once again, the scooter is a Godsend. We are years away from the things we used to do, like hiking, long walks, but I have a lot of hope we will get back to that someday. For now, I'm happy with being able to get back to the little things.
I know it's a huge step for Robin. When you are used to being active, and being out and about, being housebound is torture. For a while now, just coming along on errands made her feel better, even if she often stayed in the van. Sometimes a change of scenery is enough to keep you going.
The thing that is most poignant to me is all those little things we used to take for granted. Getting groceries, going out for lunch. Going for walks together. You have no idea how much those little things mean, how much of a blessing those little things are until they are gone.
Treasure them. I regret all those times I got frustrated on simple trips like that, be it the kids, or the checkout lines, or whatever, and I let my temper get loose and ruin it. Those simple little things are the bigger part of life, and I am going to try to make them special.
Make every day special.
It was a little bit of a fight to get it. I think there is a certain stigma when it comes to mobility devices, since she isn't old. People expect that if you need one, it comes down to being lazy or fat. One of the things people don't consider about wheelchairs is that when you have a young family, simple things like going to the grocery store is a huge hassle.
Our oldest is ten. The middlest is four and our youngest is 20 months. I'm pushing the cart with Morgan (the youngest) in the seat, and Logan (the middlest) in the cart itself. Robin doesn't have arm the strength to push herself in a wheelchair, due to the muscle breakdown from all the chemo. Not that her chair was one she could really push anyway.
So, we were left with trying to get one of the chairs with a basket from the store, or she tried to fight through the pain and use the cart as a walker. I hated seeing her do that.
Or, I suppose we could have tried to make a train and push everyone through. Or, I suppose Meg could push the cart or the chair, but we did most of our shopping while she was at school, since my weekends are usually in the middle of the week.
Yesterday, though, we had our first outing with her scooter, and it performed really well. I can lift it into the back of the van fairly easily. It breaks down for easier lifting and storage, and it fits almost perfectly in the back of the van. To fit the scooter and groceries requires a little bit more maneuvering, but it is a small price for the benefits it gives us.
The best thing, though, is that it saves Robin from a terrific amount of pain. It seems the majority of the pain is actually a side effect from the chemo, which not everyone gets. So far Robin seems to be hitting all the 'low occourence' pain side effects. When you add that to the pain that comes from the state of her hip, it makes her pretty much housebound.
So, once again, the scooter is a Godsend. We are years away from the things we used to do, like hiking, long walks, but I have a lot of hope we will get back to that someday. For now, I'm happy with being able to get back to the little things.
I know it's a huge step for Robin. When you are used to being active, and being out and about, being housebound is torture. For a while now, just coming along on errands made her feel better, even if she often stayed in the van. Sometimes a change of scenery is enough to keep you going.
The thing that is most poignant to me is all those little things we used to take for granted. Getting groceries, going out for lunch. Going for walks together. You have no idea how much those little things mean, how much of a blessing those little things are until they are gone.
Treasure them. I regret all those times I got frustrated on simple trips like that, be it the kids, or the checkout lines, or whatever, and I let my temper get loose and ruin it. Those simple little things are the bigger part of life, and I am going to try to make them special.
Make every day special.
Sunday, September 25, 2011
Some Normal Days
Robin finished her radiation the other day. This was her second round. The first round was to her hips, and comparatively, it wasn't bad. This was twelve shots of radiation to her head.
It started with them custom fitting a plastic mask to her face, drawing targets on it and using it to strap her to the table. Then a buzzer would go off, and start the procedure. She told me the flash that she saw during the procedure was violet, and it would show up about chin level. Then, she would immediately smell and taste metal. When it was over, she was exhausted.
She said the first day was the hardest, because it was kind of claustrophobic. She has a touch of it anyway, but I imagine anyone would feel that way wearing an iron plastic mask.
Now, she has one more week of the oral chemo she is taking, and then she has a week off from it. It is literally a handful of pills, twice a day, added to the handfuls of pills she already takes. Luckily, the multi-vitamins are the largest ones she has to take.
This week coming up might actually have no appointments of any type. She has another week before her infusion, and starting the oral chemo once again.
All in all, though, we are still hopeful. Halfway through the radiation, the tumor on her skull started to get tender, and it now appears to have stopped growing, something the doctors also noted. Now, it feels soft.
That is some hope.
She has also been noticing a bit of change in her lungs. She said she is getting out of breath more quickly, and since the tumors there weren't effecting her at all, that is a good sign.
They told us when the treatments start working on the tumor, the tumor and the tissue around it become inflamed, so that will give you a lot of these symptoms. That's why she ran into all those issues in her brain.
And those issues saved her life. Otherwise, we wouldn't have know about it.
Tomorrow is another day. We step bravely and with faith into it. We don't know what it holds, but we can have hope.
"Always in motion, the future is."
It started with them custom fitting a plastic mask to her face, drawing targets on it and using it to strap her to the table. Then a buzzer would go off, and start the procedure. She told me the flash that she saw during the procedure was violet, and it would show up about chin level. Then, she would immediately smell and taste metal. When it was over, she was exhausted.
Now, she has one more week of the oral chemo she is taking, and then she has a week off from it. It is literally a handful of pills, twice a day, added to the handfuls of pills she already takes. Luckily, the multi-vitamins are the largest ones she has to take.
This week coming up might actually have no appointments of any type. She has another week before her infusion, and starting the oral chemo once again.
All in all, though, we are still hopeful. Halfway through the radiation, the tumor on her skull started to get tender, and it now appears to have stopped growing, something the doctors also noted. Now, it feels soft.
That is some hope.
She has also been noticing a bit of change in her lungs. She said she is getting out of breath more quickly, and since the tumors there weren't effecting her at all, that is a good sign.
They told us when the treatments start working on the tumor, the tumor and the tissue around it become inflamed, so that will give you a lot of these symptoms. That's why she ran into all those issues in her brain.
And those issues saved her life. Otherwise, we wouldn't have know about it.
Tomorrow is another day. We step bravely and with faith into it. We don't know what it holds, but we can have hope.
"Always in motion, the future is."
Thursday, August 25, 2011
Hell of a week...
On Monday, when my weekend was just starting, I had no idea the week was going to go like this. Robin had just started her new chemo, so we were expecting all the things associated with that, but nothing else. Sunday night, she had been complaining of headaches, and had been forgetful and slightly irritable, but we just attributed it to the chemo. This was her first round, so we had no idea what was going to happen with it.
Monday morning, she woke up with a sever headache and nausea, and the told us to come into the ER. A few scans and an MRI later they told us there was also a tumor in the back of Robin's head, and that one was in her brain. It had been causing the headaches and nausea, the vision issues, etc.
So there it was. Every time we had gotten bad news, we tried to look on the good side. When it was the first breast cancer, it was, "Well, at least it's something they can operate on." Then it was the lung mets they found. "Well, at least it isn't in the brain." Now, it was in her brain.
The spot on her skull that we knew about was bad enough. A spot in her brain was our worst fears realized.
This was the first time that I really thought about how I would break it to the kids that Mommy might not be coming home. This was the first time I really thought about the fact that I might have to bury my wife.
It terrified me.
I mean, the thought is always there when dealing with cancer, that your loved one might not make it. As many advances as we have made, it is still a fairly imprecise process. Chemo is basically betting on killing the cancer before the poison kills you. Surgery is hoping you get it all, but always waiting for the next thing to pop up.
With the scans we have these days, we can stay on top of it much better, but we still aren't anywhere that would make me happy. (though, the T-cell studies vs. leukemia are promising.)
Then it happened, I posted in on Facebook and Twitter, asking my friends and family to pray. They asked their friends and family, word spread, and we ended up with a prayer net all over the world. Then, the Doctor came in to discuss the process with us, and gives his impressions. He told us that it was in a good spot for surgery, and he recommended we go that route.
Then, the great Beast Coast Earthquake of 8/23 happened. I know it may have been just a coincidence. I mean, sometimes things happen while we are discussing things, and it comes across in an ominous or uplifting manner, depending.
Then again, when you are discussing the best way to deal with your wife's brain tumor that suddenly showed up, and then when the Doctor Mentions surgery, and an earthquake shakes the hospital at that moment, it made me take notice. We are on the East Coast afterall.
It kind of reminded me of the way Marine Drill Instructors stomp their foot to make sure we are paying attention during classes.
It seems to have been the right choice, because Robin's surgery went very well, and she is resting. They hadn't moved her to a room by the time they told me to leave, but I know she had gotten some anti-nausea meds and some morphine, so she should be sleeping well right now.
So, as tough as this week was, I'm feeling hopeful. Faith is one of those things, I know I can't convince everyone that God has his hand on all this, but I know he does. I feel it in my heart, and it helps me go on.
And when you are dealing with stuff like this, having the strength to go on is important.
Also, as an aside, I'm pretty sure now, that God is non-denominational. A very varied crew was praying over the past few days. I'm just saying.
Monday morning, she woke up with a sever headache and nausea, and the told us to come into the ER. A few scans and an MRI later they told us there was also a tumor in the back of Robin's head, and that one was in her brain. It had been causing the headaches and nausea, the vision issues, etc.
So there it was. Every time we had gotten bad news, we tried to look on the good side. When it was the first breast cancer, it was, "Well, at least it's something they can operate on." Then it was the lung mets they found. "Well, at least it isn't in the brain." Now, it was in her brain.
The spot on her skull that we knew about was bad enough. A spot in her brain was our worst fears realized.
This was the first time that I really thought about how I would break it to the kids that Mommy might not be coming home. This was the first time I really thought about the fact that I might have to bury my wife.
It terrified me.
I mean, the thought is always there when dealing with cancer, that your loved one might not make it. As many advances as we have made, it is still a fairly imprecise process. Chemo is basically betting on killing the cancer before the poison kills you. Surgery is hoping you get it all, but always waiting for the next thing to pop up.
With the scans we have these days, we can stay on top of it much better, but we still aren't anywhere that would make me happy. (though, the T-cell studies vs. leukemia are promising.)
Then it happened, I posted in on Facebook and Twitter, asking my friends and family to pray. They asked their friends and family, word spread, and we ended up with a prayer net all over the world. Then, the Doctor came in to discuss the process with us, and gives his impressions. He told us that it was in a good spot for surgery, and he recommended we go that route.
Then, the great Beast Coast Earthquake of 8/23 happened. I know it may have been just a coincidence. I mean, sometimes things happen while we are discussing things, and it comes across in an ominous or uplifting manner, depending.
Then again, when you are discussing the best way to deal with your wife's brain tumor that suddenly showed up, and then when the Doctor Mentions surgery, and an earthquake shakes the hospital at that moment, it made me take notice. We are on the East Coast afterall.
It kind of reminded me of the way Marine Drill Instructors stomp their foot to make sure we are paying attention during classes.
It seems to have been the right choice, because Robin's surgery went very well, and she is resting. They hadn't moved her to a room by the time they told me to leave, but I know she had gotten some anti-nausea meds and some morphine, so she should be sleeping well right now.
So, as tough as this week was, I'm feeling hopeful. Faith is one of those things, I know I can't convince everyone that God has his hand on all this, but I know he does. I feel it in my heart, and it helps me go on.
And when you are dealing with stuff like this, having the strength to go on is important.
Also, as an aside, I'm pretty sure now, that God is non-denominational. A very varied crew was praying over the past few days. I'm just saying.
Saturday, August 20, 2011
Crunch Time
Hello everyone,
I haven't posted in a while. Everything has been kind of a whirlwind with Robin doing her Radiation and everything, but now that's over. I just didn't have the drive to write then. Terrible case of ennui.
You might have noticed if you are on my Facebook, that Robin went to the ER the other day with horrible back pain. We (and the Doctors) were worried that she had thrown a blood clot or something, which thank God she hadn't. It turned out to be some deep muscle spasms.
We did get some scans done while we were there, and it looks like the Mets in her lung have spread. I guess they were seeing little stuff all over in there. And she has a bump starting on the right side of her skull now. Since she hadn't hit her head, they are just going to assume it's cancer, thince she already has some bone mets.
But, She also started her chemo again yesterday. Her Oncology team is really at bat right now, and they seem to have a plan ready to go right now. They are going to be hitting this hard, so now we just have to hold on and ride it out.
So, here we are. It is serious. I was starting to get really depressed with all this the past couple day, but then I realized that we haven't even started this part of the fight. God is still in control of this, and as long as we can still fight this, we will. As long as there is the possibility of hope, we will hope.
Like Master Yoda said, "Always in motion the future is."
I haven't posted in a while. Everything has been kind of a whirlwind with Robin doing her Radiation and everything, but now that's over. I just didn't have the drive to write then. Terrible case of ennui.
You might have noticed if you are on my Facebook, that Robin went to the ER the other day with horrible back pain. We (and the Doctors) were worried that she had thrown a blood clot or something, which thank God she hadn't. It turned out to be some deep muscle spasms.
We did get some scans done while we were there, and it looks like the Mets in her lung have spread. I guess they were seeing little stuff all over in there. And she has a bump starting on the right side of her skull now. Since she hadn't hit her head, they are just going to assume it's cancer, thince she already has some bone mets.
But, She also started her chemo again yesterday. Her Oncology team is really at bat right now, and they seem to have a plan ready to go right now. They are going to be hitting this hard, so now we just have to hold on and ride it out.
So, here we are. It is serious. I was starting to get really depressed with all this the past couple day, but then I realized that we haven't even started this part of the fight. God is still in control of this, and as long as we can still fight this, we will. As long as there is the possibility of hope, we will hope.
Like Master Yoda said, "Always in motion the future is."
Sunday, July 31, 2011
Holding On to Hope
Yesterday I purged my fears and my anger. Sometimes, it all boils over inside and just needs to be let out. Being a writer, this is where it ends up when I have to let it out. I'd actually apologize, but that would be disingenuous. This is just a part of how it works.
I'm letting go of my anger, asking God to take it from me and help me move past it. I have to remember that there are better things to hold on to. Such as hope.
We have hope, at least, that the Doctors can still do something through medicine. We hold onto the fact that God might still do something.
I need to remember to hold onto the light that is in my life, and not focus only on the bleak.
So I chose to hold onto hope.
I'm letting go of my anger, asking God to take it from me and help me move past it. I have to remember that there are better things to hold on to. Such as hope.
We have hope, at least, that the Doctors can still do something through medicine. We hold onto the fact that God might still do something.
I need to remember to hold onto the light that is in my life, and not focus only on the bleak.
So I chose to hold onto hope.
A Cynic's Prayer
This title was a little bit more prosey than I have tended to be in this blog, but it reflects how I've been feeling lately. Robin has been recovering pretty well from her hip replacement, at least until yesterday. Her other leg started hurting a lot, and now we have to wonder if the other tumor has grown to the point where it is causing problems in that leg too. I hope not.
This brings us back around to the title. My only prayers lately have been: "Please God, heal Robin, and take away her pain." I don't think it's too much to ask, really. I'm not praying for wealth, or wisdom, or for my enemies to be defeated. I just want my wife to be well again. I want for us to be able to concentrate on getting ready for Meg starting middle school. I want to concentrate on Logan starting pre-school. I don't want to keep going over the scenario where I tell the kids that Mommy isn't coming home because she is with Jesus now.
God I don't have it in me to do that. If it wasn't for the kids, I'd suck start a pistol at this point in my life. I just want Robin to ,at the very least, not be in pain anymore. Gone are the prayers of a job I truly enjoy, owning our own home, having any type of things... We are purely in survival mode. I am only praying for my wife not to die.
I feel the worst for my mother-in-law and for my oldest daughter. For my mother in law, she is dealing with the one bright side in this for us. It isn't happening to one of our kids. For her, it's just that. Robin is her daughter, her baby, no matter what age she is.
For Meg, my heart breaks because no soon-to-be fifth grade should have to deal with this. Her life should be decorating her locker, dealing with mean middle school girls and finding out that some boys are cute. Waking up wondering if mommy feels good enough to make her breakfast isn't part of the deal.
I keep waking up every morning hoping one of two things: This is a dream, or I just didn't wake. The second one is purely selfish, because I am getting to the end of my rope. I realize the second one is me just raging, because I know I have to be here for my children, no matter what. Should it come to having to have a talk with them, I will find the reserves inside myself and do it, because they need me around. I don't want to, but life is a long string of doing things we don't want to do. It's duty, plain and simple.
I just pray it doesn't come to that.
I keep praying. Even though it has become the definition of insanity right now: "Doing something over and over and expecting different results." I guess that is where sanity crosses over into faith, however tenuous it might be.
Dear God,
Take me instead of my wife. I am damaged goods anyway. My children need a mother more anyway. Mothers are the ones who really make things better. Mothers are the ones who kiss away boo-boos. Mother is the name for God on the lips and hearts of children. If you have decided you have to take one of us, because you, in you mysterious an unknowable ways, have to kill one of my children's parents, than take me. Heal my wife. I'm really trying not to be mad at you, but you have been kind of a dick lately. You have brought a lot of support our way through the love of others who have empathy to what we are going through. You have placed the burden on the hearts of many people to reach out to us. A lot of people are praying, right now, for you to heal Robin. What's the deal. I accept that sometimes you say no, because you have to. But that's bullshit, you're God. You said no to a lot of other prayers before. All I wan't is for my wife to pull through. you already took her boobs, her uterus her hip and left her with a patchwork of scars. It makes her more beautiful to me because her strength shines through, but damn you for the pain. I accept what is. Sometimes, Buddhists were onto something. I accept what is, where we are, and that you have some kind of plan. But please heal Robin. And if you can't do that, than take me in her place.
-Amen
This brings us back around to the title. My only prayers lately have been: "Please God, heal Robin, and take away her pain." I don't think it's too much to ask, really. I'm not praying for wealth, or wisdom, or for my enemies to be defeated. I just want my wife to be well again. I want for us to be able to concentrate on getting ready for Meg starting middle school. I want to concentrate on Logan starting pre-school. I don't want to keep going over the scenario where I tell the kids that Mommy isn't coming home because she is with Jesus now.
God I don't have it in me to do that. If it wasn't for the kids, I'd suck start a pistol at this point in my life. I just want Robin to ,at the very least, not be in pain anymore. Gone are the prayers of a job I truly enjoy, owning our own home, having any type of things... We are purely in survival mode. I am only praying for my wife not to die.
I feel the worst for my mother-in-law and for my oldest daughter. For my mother in law, she is dealing with the one bright side in this for us. It isn't happening to one of our kids. For her, it's just that. Robin is her daughter, her baby, no matter what age she is.
For Meg, my heart breaks because no soon-to-be fifth grade should have to deal with this. Her life should be decorating her locker, dealing with mean middle school girls and finding out that some boys are cute. Waking up wondering if mommy feels good enough to make her breakfast isn't part of the deal.
I keep waking up every morning hoping one of two things: This is a dream, or I just didn't wake. The second one is purely selfish, because I am getting to the end of my rope. I realize the second one is me just raging, because I know I have to be here for my children, no matter what. Should it come to having to have a talk with them, I will find the reserves inside myself and do it, because they need me around. I don't want to, but life is a long string of doing things we don't want to do. It's duty, plain and simple.
I just pray it doesn't come to that.
I keep praying. Even though it has become the definition of insanity right now: "Doing something over and over and expecting different results." I guess that is where sanity crosses over into faith, however tenuous it might be.
Dear God,
Take me instead of my wife. I am damaged goods anyway. My children need a mother more anyway. Mothers are the ones who really make things better. Mothers are the ones who kiss away boo-boos. Mother is the name for God on the lips and hearts of children. If you have decided you have to take one of us, because you, in you mysterious an unknowable ways, have to kill one of my children's parents, than take me. Heal my wife. I'm really trying not to be mad at you, but you have been kind of a dick lately. You have brought a lot of support our way through the love of others who have empathy to what we are going through. You have placed the burden on the hearts of many people to reach out to us. A lot of people are praying, right now, for you to heal Robin. What's the deal. I accept that sometimes you say no, because you have to. But that's bullshit, you're God. You said no to a lot of other prayers before. All I wan't is for my wife to pull through. you already took her boobs, her uterus her hip and left her with a patchwork of scars. It makes her more beautiful to me because her strength shines through, but damn you for the pain. I accept what is. Sometimes, Buddhists were onto something. I accept what is, where we are, and that you have some kind of plan. But please heal Robin. And if you can't do that, than take me in her place.
-Amen
Friday, July 8, 2011
Cotton and Steel
"Cotton does not sharpen steel."
One of my friends told me that a few weeks ago, and I keep coming back to it lately. I keep thinking about it, rolling it around in my mind, and it rings true.
I feel better after venting yesterday. A lot of feelings had been building in my mind, and they just needed to be let loose. Through the outpouring of love from our friends, I am back to my center again. When it comes down to it, none of us understand why we have adversity in our lives, but they sharpen us. Through are adversity, we become stronger. The fire of the Crucible refines us. (oorah!)
So, here we are. The cancer is elsewhere in Robin's body. This is basically our worst-case scenario, and we are in it. Now we move forward. When trials appear, we move forward, or we die.
So we move forward.
Musashi said in his Dokkodo, "Accept everything just the way it is." This is our reality. This is what is. So we accept it and move forward.
We all have trials and pain, and don't understand why. I don't know why some of my friends have had miscarriages, I don't know why my friend's daughter has an incurable bone disease. I don't know why cancer exists at all.
But there are only two choices. Fight on, or die.
We will fight.
One of my friends told me that a few weeks ago, and I keep coming back to it lately. I keep thinking about it, rolling it around in my mind, and it rings true.
I feel better after venting yesterday. A lot of feelings had been building in my mind, and they just needed to be let loose. Through the outpouring of love from our friends, I am back to my center again. When it comes down to it, none of us understand why we have adversity in our lives, but they sharpen us. Through are adversity, we become stronger. The fire of the Crucible refines us. (oorah!)
So, here we are. The cancer is elsewhere in Robin's body. This is basically our worst-case scenario, and we are in it. Now we move forward. When trials appear, we move forward, or we die.
So we move forward.
Musashi said in his Dokkodo, "Accept everything just the way it is." This is our reality. This is what is. So we accept it and move forward.
We all have trials and pain, and don't understand why. I don't know why some of my friends have had miscarriages, I don't know why my friend's daughter has an incurable bone disease. I don't know why cancer exists at all.
But there are only two choices. Fight on, or die.
We will fight.
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