Gahr
Ambassador of Blues & Brews
I love this forum, the way people act here, the room for differences in taste and opinion, the wealth of information that people willingly share and the helpfulness everybody shows. People are very supportive, and although most of us have never met (and probably never will), I think of many of the members here as my friends. In short, The Tone Rooms is my "happy place". And I have needed a happy place this past year.
I haven't talked about this before, simply because I wanted the forum to be the place where I could enter and leave all my troubles outside the door. But I guess the end of the year is the time for "summing up" and hopefully somehow starting over and making things better.
So, what has happened?
Well, here we go:
2018 has quite simply been the worst year of my life. Some of you might remember that I wrote about my wife having some problems back in late February/early March. She suddenly lost all strength in her right leg and was in severe pain. She was sent to hospital, and while the pain receded slightly after a little while, it turned out to be just the start of something worse.
At first, the doctors thought the problem was "only" neurological. CT scans revealed several tumors on various peripheral nerves along her spine. The largest one was located in the pelvic area and was the one causing most of her problems. The doctors were quite puzzled as to what her diagnosis really was, since her symptoms didn't fit anything they had seen before. After a while they landed on something called Schwannomatosis, a disease which is very rare. It is also a hereditary disease, and we were told our kids had a 50 % chance of inheriting it from her. This hit us REALLY hard. One thing is her having problems, our kids ending up the same way is a whole different ball game...
However, the doctors were not satisfied with this disease being the only thing causing her problems. The tumors were pretty atypic, and biopsies left them even more puzzled. They had some samples sent to a guy in Boston, and the conclusion was that she had cancer as well. Further test showed cancerous growth in three of the tumors. She also underwent several genetic tests to try to establish wether our kids were in danger of inheriting the problems.
She started getting chemo therapy in early June, and have had eight one-week long treatments since, doing one week of chemo, two weeks off. After her last round of chemo, she started radiation treatment. She is still doing radiation, but her last treatment will be Jan. 3.
Naturally, all of this has hit the whole family really hard. She is not able to walk without crutches, and there is very little chance of her getting any better in that regard, really. The kids have been fantastic, but the 11-year-old has taken the whole thing pretty hard, naturally. I have been so knackered by the whole thing, especially earlier in the year, that I have had periods where I have not been able to work because of exhaustion.
Since she has not been able to work, her income has been cut beck quite a bit, and to top it all off, two days ago I got a message from the hope brew store company through which I have been selling beer kits with my name on it, that they would no longer pay me any royalties. This means my income will be cut back quite a bit as well this coming year. We will manage, but it sucks. I have asked for a raise at work earlier this year (haven't had one in my five years of working at the brewery), but so far nothing has happened...
My own physical health problems (bursitis in the spring, severely sprained ankle this fall, still not healed) are mere trifles compared to what my wife has been going through, but her illness affects all of us. Thankfully we have s handful of supportive friends and families that care about us.
Although the year has been utter crap all in all, on the positive side we have this:
The results of her genetic tests show that the chance of her passing the Schwannomatosis on to the boys is very, small. The disorder is caused by mutations in two genes, and they have not been able to find any of those mutations in her blood. Hence, her form of the mutation is what is called a mosaic, meaning that it has happened spontaneously at an early stage of her embryonic development, in specific places in her body, but not in all cells. Since we never knew for sure that the kids could inherit it, we have never told them about it. Now it turns out we don't have to anyway. When we learned this in October, I'm not ashamed to say I cried from relief.
She has not had her final tests yet (the treatment not being finished), but already after the fourth round of chemo the tests showed that the active cancer was minimal. And it had not spread to any other places than the three original cancerous tumors. The chemo had had a very positive effect on the tumors (which originally were benign) themselves as well. The smaller ones were hardly visible anymore. However, the largest one had not been affected as much as they hoped for. Because of its location, the can't operate without running the risk of damaging her nerves, something which will lead to her losing both legs, instead of leaving her "only" with one useless limb. Further tests will be run in late February, and then it will be decided whether or not they will risk an operation. If the tumor has been reduced sufficiently, they might be able to operate safely.
But it seems the active cancer has been beat, at least. She will most likely never walk without help again, but she's alive and is not confined to a wheelchair. The economic side of things suck, but those are completely secondary problems.
Whew! That was that. Sorry for venting, guys. I don't want pity, but it feels nice to get things out every once in a while.
I haven't talked about this before, simply because I wanted the forum to be the place where I could enter and leave all my troubles outside the door. But I guess the end of the year is the time for "summing up" and hopefully somehow starting over and making things better.
So, what has happened?
Well, here we go:
2018 has quite simply been the worst year of my life. Some of you might remember that I wrote about my wife having some problems back in late February/early March. She suddenly lost all strength in her right leg and was in severe pain. She was sent to hospital, and while the pain receded slightly after a little while, it turned out to be just the start of something worse.
At first, the doctors thought the problem was "only" neurological. CT scans revealed several tumors on various peripheral nerves along her spine. The largest one was located in the pelvic area and was the one causing most of her problems. The doctors were quite puzzled as to what her diagnosis really was, since her symptoms didn't fit anything they had seen before. After a while they landed on something called Schwannomatosis, a disease which is very rare. It is also a hereditary disease, and we were told our kids had a 50 % chance of inheriting it from her. This hit us REALLY hard. One thing is her having problems, our kids ending up the same way is a whole different ball game...
However, the doctors were not satisfied with this disease being the only thing causing her problems. The tumors were pretty atypic, and biopsies left them even more puzzled. They had some samples sent to a guy in Boston, and the conclusion was that she had cancer as well. Further test showed cancerous growth in three of the tumors. She also underwent several genetic tests to try to establish wether our kids were in danger of inheriting the problems.
She started getting chemo therapy in early June, and have had eight one-week long treatments since, doing one week of chemo, two weeks off. After her last round of chemo, she started radiation treatment. She is still doing radiation, but her last treatment will be Jan. 3.
Naturally, all of this has hit the whole family really hard. She is not able to walk without crutches, and there is very little chance of her getting any better in that regard, really. The kids have been fantastic, but the 11-year-old has taken the whole thing pretty hard, naturally. I have been so knackered by the whole thing, especially earlier in the year, that I have had periods where I have not been able to work because of exhaustion.
Since she has not been able to work, her income has been cut beck quite a bit, and to top it all off, two days ago I got a message from the hope brew store company through which I have been selling beer kits with my name on it, that they would no longer pay me any royalties. This means my income will be cut back quite a bit as well this coming year. We will manage, but it sucks. I have asked for a raise at work earlier this year (haven't had one in my five years of working at the brewery), but so far nothing has happened...
My own physical health problems (bursitis in the spring, severely sprained ankle this fall, still not healed) are mere trifles compared to what my wife has been going through, but her illness affects all of us. Thankfully we have s handful of supportive friends and families that care about us.
Although the year has been utter crap all in all, on the positive side we have this:
The results of her genetic tests show that the chance of her passing the Schwannomatosis on to the boys is very, small. The disorder is caused by mutations in two genes, and they have not been able to find any of those mutations in her blood. Hence, her form of the mutation is what is called a mosaic, meaning that it has happened spontaneously at an early stage of her embryonic development, in specific places in her body, but not in all cells. Since we never knew for sure that the kids could inherit it, we have never told them about it. Now it turns out we don't have to anyway. When we learned this in October, I'm not ashamed to say I cried from relief.
She has not had her final tests yet (the treatment not being finished), but already after the fourth round of chemo the tests showed that the active cancer was minimal. And it had not spread to any other places than the three original cancerous tumors. The chemo had had a very positive effect on the tumors (which originally were benign) themselves as well. The smaller ones were hardly visible anymore. However, the largest one had not been affected as much as they hoped for. Because of its location, the can't operate without running the risk of damaging her nerves, something which will lead to her losing both legs, instead of leaving her "only" with one useless limb. Further tests will be run in late February, and then it will be decided whether or not they will risk an operation. If the tumor has been reduced sufficiently, they might be able to operate safely.
But it seems the active cancer has been beat, at least. She will most likely never walk without help again, but she's alive and is not confined to a wheelchair. The economic side of things suck, but those are completely secondary problems.
Whew! That was that. Sorry for venting, guys. I don't want pity, but it feels nice to get things out every once in a while.
