Re: update on treatment for cancer

[Guest guest]

Hi Lynda,There's not much to do for my ear cancer. The cancer is gone. The worst case was if the cancer invaded the bone. It hadn't. It was sitting right on top of it, but no invasion. That bone was removed anyway. I could do radiation, but not only would I increase my risk for other cancers significantly, I would give up my salivary glands, sense of taste and smell. Top that off with likely problems with my teeth and digestion . . . I'm going to pass for now. The surgeon will be following me closely the rest of my life. I can only pray everything will continue to do well.My hair cut still looks bad, but not really noticeable if one isn't looking for a problem. I may have to have my head partially shaved again though - if I elect to have a titanium screw

implanted in my skull for an external hearing aid to clip onto. I'll be tested soon to see if I would benefit from one. It sounds simple, but he'll have to removed about an inch square piece of my scalp (permanently), then rout a niche in my skull where the hearing aid will rest. I won't know until after he tests me if it would be worth it. On the positive side, I'm feeling really, really good! Better than I have in a very long time! Still taking Coumadin, Synthroid and Nexium. I'll be on Coumadin for at least six months. I'm working on increasing natural blood thinners so I can reduce Coumadin. Synthroid is probably here to stay since I responded so well to it. . . After my esophagus is healed (about six weeks), I'll be experimenting with natural means of reducing acidity. Between getting rid of my ear pain, the discomfort of GERD, the Coumadin headaches, and general fatigue and depression, I feel like a new person! Now to

lose some weight and get fit. Hopefully the stuff you'll be taking, that may have some masculine effects won't be as bad as it seems. I seriously doubt you have identity issues! . . . Sometimes the idea is worse than the reality! We'll pray that, when you start feeling like a "new person", it will be someone you know and like!Love,Rogene Re: update on treatment for cancer

Rogene,

For now, I am winning. This is the longest road I will probably ever

travel in trying to get well.

I have such a full schedule I am having problems even reading most of

the emails. But, that may change in a few months.

This is a battle I am willing to fight as long as my body will fight

with me. So, it could be a long one.

Cancer has some tricks of its own, and mutating is one of them. That

could be a really tricky time.

I will try to keep everyone updated the best I can and ask for

support and prayers.

I hope your hair is growing back and you are following up carefully

on your ear cancer.

Love,

Lynda

At 08:45 PM 5/1/2008, you wrote:

>Wow Lynda,

>

>You've got your plate full for the foreseeable future . . . But,

>judging on your attitude, you're winning your battle against cancer.

>. . It sounds like you have a really good support team in place to

>help you through this period. . .

>

>I hope you're planning a magnificent treat for yourself when this is

>over and you're ready to celebrate!

>

>We're missing you on the group - but understand why you're just a

>bit scarce! . .

>

>Please continue taking good care of yourself! . .. We'll keep you in

>our prayers.

>

>Hugs and prayers,

>

>Rogene

>

>

>

[Guest guest]

Rogene,

As hard as that is, I think you are on the right path.

Lynda

At 10:14 PM 5/1/2008, you wrote:

>Hi Lynda,

>

>There's not much to do for my ear cancer. The cancer is gone. The

>worst case was if the cancer invaded the bone. It hadn't. It was

>sitting right on top of it, but no invasion. That bone was removed anyway.

>

>I could do radiation, but not only would I increase my risk for

>other cancers significantly, I would give up my salivary glands,

>sense of taste and smell. Top that off with likely problems with my

>teeth and digestion . . . I'm going to pass for now.

>

>The surgeon will be following me closely the rest of my life. I can

>only pray everything will continue to do well.

>

>My hair cut still looks bad, but not really noticeable if one isn't

>looking for a problem. I may have to have my head partially shaved

>again though - if I elect to have a titanium screw implanted in my

>skull for an external hearing aid to clip onto. I'll be tested soon

>to see if I would benefit from one. It sounds simple, but he'll have

>to removed about an inch square piece of my scalp (permanently),

>then rout a niche in my skull where the hearing aid will rest.

>I won't know until after he tests me if it would be worth it.

>

>On the positive side, I'm feeling really, really good! Better than I

>have in a very long time! Still taking Coumadin, Synthroid and

>Nexium. I'll be on Coumadin for at least six months. I'm working on

>increasing natural blood thinners so I can reduce Coumadin.

>Synthroid is probably here to stay since I responded so well to it.

>. . After my esophagus is healed (about six weeks), I'll be

>experimenting with natural means of reducing acidity.

>

>Between getting rid of my ear pain, the discomfort of GERD, the

>Coumadin headaches, and general fatigue and depression, I feel like

>a new person! Now to lose some weight and get fit.

>

>Hopefully the stuff you'll be taking, that may have some masculine

>effects won't be as bad as it seems. I seriously doubt you have

>identity issues! . . . Sometimes the idea is worse than the reality!

>

>We'll pray that, when you start feeling like a " new person " , it will

>be someone you know and like!

>

>Love,

>

>Rogene

>

>

>

> Re: update on treatment for cancer

>

>Rogene,

>

>For now, I am winning. This is the longest road I will probably ever

>travel in trying to get well.

>

>I have such a full schedule I am having problems even reading most of

>the emails. But, that may change in a few months.

>

>This is a battle I am willing to fight as long as my body will fight

>with me. So, it could be a long one.

>

>Cancer has some tricks of its own, and mutating is one of them. That

>could be a really tricky time.

>

>I will try to keep everyone updated the best I can and ask for

>support and prayers.

>

>I hope your hair is growing back and you are following up carefully

>on your ear cancer.

>

>Love,

>

>Lynda

>

>At 08:45 PM 5/1/2008, you wrote:

>

> >Wow Lynda,

> >

> >You've got your plate full for the foreseeable future . . . But,

> >judging on your attitude, you're winning your battle against cancer.

> >. . It sounds like you have a really good support team in place to

> >help you through this period. . .

> >

> >I hope you're planning a magnificent treat for yourself when this is

> >over and you're ready to celebrate!

> >

> >We're missing you on the group - but understand why you're just a

> >bit scarce! . .

> >

> >Please continue taking good care of yourself! . .. We'll keep you in

> >our prayers.

> >

> >Hugs and prayers,

> >

> >Rogene

> >

> >

> >

>

>

>

[Guest guest]

Lynda,

Thank you for sharing. Sounds like more positives than negatives. I

am happy the pleural fluid is greatly reduced. Looks like the chemo

is doing its job. I am so happy for you. You sound like you are in a

better place too. Once you get that nerve block and the RSD pain

subsides, you can put all of your concentration into fighting the

cancer. You sound like you are very determined.

I am happy you and your sister can be together. Sounds like she is

going to need you just as much as you need her. Tell Bob Happy

Birthday! Sorry you can't go with him but staying home and taking

care of you is important.

Love you, Lynn

>

> I got my PET scan yesterday afternoon and most is good. The lung

> and liver cancers are definitely smaller and very little fluid in the

> pleural cavity. Some decrease in lymph node activity. The right

> scapula seems to be a place where there is a problem with bone

> cancer. It may have to be irradiated later if the cancer is small

enough.

>

> I have had 3 treatments and there is distinct progress (not fast

> enough for me, but progress none the less). The extent that it has

> decreased shows that the chemo is steadily working. The cancer's are

> pretty much half the size they were. They have had to reduce the

> dosage because of side effects. They say that does not change the

> effect on treating the cancer. I probably will not have to do any

> more thoracentesis as the fluid in the pleural cavity is very little.

>

> My next treatment is on the 6th of May. It would have been sooner

> except for the hand-foot syndrome that really messed me up. Painful

> hands, like blisters. Some on my feet, sitting on ice right now to

> keep them under control. A lot of creams, hydrocortisone, bag balm,

> urea and lanolin, aloe vera, and wearing light socks over the cream

> at night and cotton gloves over the cream on my hands seems to

> help. Ice helps. Steroids, unfortunately, are the most help and

> they make me hyper. Having a hard time sleeping sometimes because of

> them and because the side effects of the chemo are cumulative and

> cause problems with sleep.

>

> It will be at least 3 more months of this treatment, maybe followed

> by one or two others (different chemo) that are more aggressive

> before I let them switch me to Femara. I am doing EMDR to help

> prepare for that transition (to Femara), which does basically

> defeminize your body. I have problems with that, so will be doing

> guided imagery and visualization along with EMDR to just prepare

> myself for all this.

>

> I have drastically studied the alternative treatments, and I can tell

> you, I would be in hospice on my way out had I chosen to go by any of

> those methods considering the level of cancer in my body, so I think

> I was sent down the right path for this treatment.

>

> I am doing Reiki, massage, chiropractic, nutritional, spiritual and

> much other work to prepare myself for a good long time fighting back

> against this cancer.

>

> I have gotten past the worst of the anger and depression (does one

> ever lose all of that?) and am doing the planning and working with

> support and deciding how I want to spend my future. So I guess one

> can say I have done a lot of work to get where I am today. Sometimes

> I slip backwards, but the trend is toward having a life I can enjoy

> again once I get through the treatment.

>

> The anti-hormone, Femara, can have some unexpected changes, mutations

> that take it away from working as the cancer changes to another

> form. They have to watch for that down the road and be prepared to

> do more chemo if that happens. I have more to learn about how they

> follow up after one is off chemo, but I will know a lot more by this

> July or August, I am sure. Right now I just have to get through the

> next few chemos and do another PET scan and see where that is at.

>

> My sister Collie is here and we are having a lot of her medical work

> done here while she is in a place she trusts to have it done. She

> may have knee surgery before returning to Hawaii as they are sooooo

> much better here, having her dentures relined, eyes checked, back

> checked, physical therapy, chiropractic, etc. There is even the

> possibility of minimally invasive back surgery, but we hope

> not. This would be the place to do these things, as the professional

> level is much higher here than in Hawaii.

>

> On May 15th I will be having a nerve block to see if the RSD in my

> left foot responds to it, and if it does, I may have to do more work

> to permanently stop the pain so that I can deal with the

> cancer. They hyperbarics are out for now, but could be revisited

> early next year or late this year if necessary. I just need to get

> rid of the pain in my foot and ankle so I can focus on healing my

> body from the cancer, at least for now.

>

> Bob and his family will be doing the reunion trip without me this

> year, as the treatments became delayed and the side effects will be

> kicking in right during the time of the trip, so I will be home. But

> I know that he will have a great time with him family. He will be 86

> in 2 days.

>

> So, that is my basic update. Feel free to ask any questions I may

> have not answered.

>

> Love,

> Lynda

>

[Guest guest]

Rogene,

I'm so glad to hear you're progressing. It's been a rough time for

our heroes - yourself, Lynda, DeDe, Lea, Sandy, Bindi - but you're

all in my prayers.

Sis

>

> >Wow Lynda,

> >

> >You've got your plate full for the foreseeable future . . . But,

> >judging on your attitude, you're winning your battle against

cancer.

> >. . It sounds like you have a really good support team in place

to

> >help you through this period. . .

> >

> >I hope you're planning a magnificent treat for yourself when this

is

> >over and you're ready to celebrate!

> >

> >We're missing you on the group - but understand why you're just a

> >bit scarce! . .

> >

> >Please continue taking good care of yourself! . .. We'll keep you

in

> >our prayers.

> >

> >Hugs and prayers,

> >

> >Rogene

> >

> >

> >

>

>

>

>

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