Getting on with getting on

Hazel, I read several of your blog posts. You are an excellent writer; thank you for sharing your story with us. 

From what I can gather, your husband had a good-sized melanoma tumor removed from his scalp last June. The SLNB and PET scans were negative so at that time he was NED. He subsequently entered and completed a GVAX clinical trial and as of now is still NED.

Since his diagnosis, you have been putting a lot of time and emotional energy into researching treatment options and helping him through his treatments. You were stretched too thin, so you decided to stop most of your freelance writing work and concentrate on your husband and your personal life. Now that the GVAX is finished and he is still NED, you might start to take on some work but you really want to re-assess you priorities and think about how you want to live your life going forward from here. One thing that's bothering you is that you can't just blithely put melanoma out of your mind and pretend it no longer exists– you feel like a Sword of Damocles is hanging over your head all the time. Your husband, on the other hand, is more laid back and accepting of things– sort of a "what will be will be" attitude. 

Is this more-or-less correct? I suppose that just about everyone here who is either Stage III or Stage IV and NED can identify with your concerns. How can we help you?

Hazel, I read several of your blog posts. You are an excellent writer; thank you for sharing your story with us. 

From what I can gather, your husband had a good-sized melanoma tumor removed from his scalp last June. The SLNB and PET scans were negative so at that time he was NED. He subsequently entered and completed a GVAX clinical trial and as of now is still NED.

Since his diagnosis, you have been putting a lot of time and emotional energy into researching treatment options and helping him through his treatments. You were stretched too thin, so you decided to stop most of your freelance writing work and concentrate on your husband and your personal life. Now that the GVAX is finished and he is still NED, you might start to take on some work but you really want to re-assess you priorities and think about how you want to live your life going forward from here. One thing that's bothering you is that you can't just blithely put melanoma out of your mind and pretend it no longer exists– you feel like a Sword of Damocles is hanging over your head all the time. Your husband, on the other hand, is more laid back and accepting of things– sort of a "what will be will be" attitude. 

Is this more-or-less correct? I suppose that just about everyone here who is either Stage III or Stage IV and NED can identify with your concerns. How can we help you?

Hazel, I read several of your blog posts. You are an excellent writer; thank you for sharing your story with us. 

From what I can gather, your husband had a good-sized melanoma tumor removed from his scalp last June. The SLNB and PET scans were negative so at that time he was NED. He subsequently entered and completed a GVAX clinical trial and as of now is still NED.

Since his diagnosis, you have been putting a lot of time and emotional energy into researching treatment options and helping him through his treatments. You were stretched too thin, so you decided to stop most of your freelance writing work and concentrate on your husband and your personal life. Now that the GVAX is finished and he is still NED, you might start to take on some work but you really want to re-assess you priorities and think about how you want to live your life going forward from here. One thing that's bothering you is that you can't just blithely put melanoma out of your mind and pretend it no longer exists– you feel like a Sword of Damocles is hanging over your head all the time. Your husband, on the other hand, is more laid back and accepting of things– sort of a "what will be will be" attitude. 

Is this more-or-less correct? I suppose that just about everyone here who is either Stage III or Stage IV and NED can identify with your concerns. How can we help you?

Hi Hazel,

As it so happens, I am on a Southwest flight right now on my way to Baltimore for my last GVAX treatment. I ended up in cohort 'C', high dose of GVAX and low dose of Cytoxin.

I related with a lot of what was posted in the death and courage article too. Oh and I would like to second what POW says, I have read your blog posts, and you are a good writer!

I had to jump through some hoops to get in the trial, and I have to fly from Seattle to Baltimore to participate. But the thing for me was that I just could not abide "watch and wait". The way I see it is if I do end up dying from this thing, I would hate to look back and wonder "what if?". This way I know I have done something to fight back.

That being said I wonder what it will be like once this week is over with and my part in the trial winds down too. Maybe I will get to the point where I don't think about it much and life will continue. I sure hope so!

I also know that I am not as afraid as I thought I would be (at least that's how I feel now, it might be a different story if death comes knocking on my door!). I was pretty fearful at first, but this board and prayer helped a lot.

I hope things settle down for you and your husband, and life just resumes as usual. Nobody knows what the future will bring I have come to believe that its better just to assume a good outcome. That bothered me at first, because I have known people to die from cancer who were determined to win. I didn't want to be bewildered if that attitude alone didn't save me so I thought I had to be brutally realistic. However, I have come to think that realism and optimism are not incompatible.

Best – Paul.

Hi Hazel,

As it so happens, I am on a Southwest flight right now on my way to Baltimore for my last GVAX treatment. I ended up in cohort 'C', high dose of GVAX and low dose of Cytoxin.

I related with a lot of what was posted in the death and courage article too. Oh and I would like to second what POW says, I have read your blog posts, and you are a good writer!

I had to jump through some hoops to get in the trial, and I have to fly from Seattle to Baltimore to participate. But the thing for me was that I just could not abide "watch and wait". The way I see it is if I do end up dying from this thing, I would hate to look back and wonder "what if?". This way I know I have done something to fight back.

That being said I wonder what it will be like once this week is over with and my part in the trial winds down too. Maybe I will get to the point where I don't think about it much and life will continue. I sure hope so!

I also know that I am not as afraid as I thought I would be (at least that's how I feel now, it might be a different story if death comes knocking on my door!). I was pretty fearful at first, but this board and prayer helped a lot.

I hope things settle down for you and your husband, and life just resumes as usual. Nobody knows what the future will bring I have come to believe that its better just to assume a good outcome. That bothered me at first, because I have known people to die from cancer who were determined to win. I didn't want to be bewildered if that attitude alone didn't save me so I thought I had to be brutally realistic. However, I have come to think that realism and optimism are not incompatible.

Best – Paul.

Hi Hazel,

As it so happens, I am on a Southwest flight right now on my way to Baltimore for my last GVAX treatment. I ended up in cohort 'C', high dose of GVAX and low dose of Cytoxin.

I related with a lot of what was posted in the death and courage article too. Oh and I would like to second what POW says, I have read your blog posts, and you are a good writer!

I had to jump through some hoops to get in the trial, and I have to fly from Seattle to Baltimore to participate. But the thing for me was that I just could not abide "watch and wait". The way I see it is if I do end up dying from this thing, I would hate to look back and wonder "what if?". This way I know I have done something to fight back.

That being said I wonder what it will be like once this week is over with and my part in the trial winds down too. Maybe I will get to the point where I don't think about it much and life will continue. I sure hope so!

I also know that I am not as afraid as I thought I would be (at least that's how I feel now, it might be a different story if death comes knocking on my door!). I was pretty fearful at first, but this board and prayer helped a lot.

I hope things settle down for you and your husband, and life just resumes as usual. Nobody knows what the future will bring I have come to believe that its better just to assume a good outcome. That bothered me at first, because I have known people to die from cancer who were determined to win. I didn't want to be bewildered if that attitude alone didn't save me so I thought I had to be brutally realistic. However, I have come to think that realism and optimism are not incompatible.

Best – Paul.

Thanks so much for sharing, Hazel.  Your blog post resonated with me in a number of respects.  My husband ~ stage 3B diagnosed last summer ~ respond very differently to adversity, although on a superficial level we both qualify as "keep calm and carry on".  Yet while he's the one who actually has cancer, the one experiencing the treatment firsthand, he doesn't think about it a great deal.  Well, he thinks about it in terms of feeling fatigued from the drug and inconvenienced by doctor's appointments.  That sort of thing.  But I feel more gripped by a sense of wondering if and when the other shoe will drop. 

Just coming to this board today, for the first time in a long while, I see that yet another familiar name ~ Laurie in Maine ~ isn't with us any more.  Melanoma feels like the "gift" that keeps on giving ~ whether you know it or not.  It's good that I'm in a supremely busy season of life ~ we own an organic dairy; are in the midst of a house remodel; and have five boys ranging in age from 8 to 17.  So it isn't as if I have time to dwell on the what ifs.  But it's there, anyway.  That awareness, more keen than ever, that there's no crystal ball.  We move on…and yet there's a new piece of baggage we bring along, like it or not.  That's how I feel, anyway, but I know for Hans, once he's past the phase of treatment, it really won't be on his mind.  I envy that.

Anyway.  Bit of a ramble there.  Suffice it to say I appreciate hearing your thoughts.

Best,

Colleen

Thanks so much for sharing, Hazel.  Your blog post resonated with me in a number of respects.  My husband ~ stage 3B diagnosed last summer ~ respond very differently to adversity, although on a superficial level we both qualify as "keep calm and carry on".  Yet while he's the one who actually has cancer, the one experiencing the treatment firsthand, he doesn't think about it a great deal.  Well, he thinks about it in terms of feeling fatigued from the drug and inconvenienced by doctor's appointments.  That sort of thing.  But I feel more gripped by a sense of wondering if and when the other shoe will drop. 

Just coming to this board today, for the first time in a long while, I see that yet another familiar name ~ Laurie in Maine ~ isn't with us any more.  Melanoma feels like the "gift" that keeps on giving ~ whether you know it or not.  It's good that I'm in a supremely busy season of life ~ we own an organic dairy; are in the midst of a house remodel; and have five boys ranging in age from 8 to 17.  So it isn't as if I have time to dwell on the what ifs.  But it's there, anyway.  That awareness, more keen than ever, that there's no crystal ball.  We move on…and yet there's a new piece of baggage we bring along, like it or not.  That's how I feel, anyway, but I know for Hans, once he's past the phase of treatment, it really won't be on his mind.  I envy that.

Anyway.  Bit of a ramble there.  Suffice it to say I appreciate hearing your thoughts.

Best,

Colleen

Thanks so much for sharing, Hazel.  Your blog post resonated with me in a number of respects.  My husband ~ stage 3B diagnosed last summer ~ respond very differently to adversity, although on a superficial level we both qualify as "keep calm and carry on".  Yet while he's the one who actually has cancer, the one experiencing the treatment firsthand, he doesn't think about it a great deal.  Well, he thinks about it in terms of feeling fatigued from the drug and inconvenienced by doctor's appointments.  That sort of thing.  But I feel more gripped by a sense of wondering if and when the other shoe will drop. 

Just coming to this board today, for the first time in a long while, I see that yet another familiar name ~ Laurie in Maine ~ isn't with us any more.  Melanoma feels like the "gift" that keeps on giving ~ whether you know it or not.  It's good that I'm in a supremely busy season of life ~ we own an organic dairy; are in the midst of a house remodel; and have five boys ranging in age from 8 to 17.  So it isn't as if I have time to dwell on the what ifs.  But it's there, anyway.  That awareness, more keen than ever, that there's no crystal ball.  We move on…and yet there's a new piece of baggage we bring along, like it or not.  That's how I feel, anyway, but I know for Hans, once he's past the phase of treatment, it really won't be on his mind.  I envy that.

Anyway.  Bit of a ramble there.  Suffice it to say I appreciate hearing your thoughts.

Best,

Colleen