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Marching Forward

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

Hi Everyone,

Well, we're marching forward here, just at a snail's pace. Hubby has Cardio appt. tomorrow. I really think a mistake was made when they removed all but a fraction of his diuretics in the hospitalization. Feet and legs still severly swollen and urination starting to dwindle(urine is dark brown also). Blood pressure still pretty low. I could never figure out why he was on BP medicine in the first place. His body sure isn't missing the removal of it.

We see the Endocrinologist on Friday. Surprisingly, the reduction of his insulin is keeping his blood sugar stable. Of course, this could be because he's hardly eating anything.

I tried to make an appt. with one of the Nephrologists who saw him in the hospital(there were four, but we liked this one), and his first available appt. isn't until March. So, I'm waiting for a call from the ofc. mgr. to see if they can fit him in sooner, like next week.

And last, but certainly not least, we have a consultation with an onc at MDA on Jan. 11.

And, of course, he still has all those teeth to deal with.................................so for right now, Depression reigns around here. We both know all the many obstacles he is facing. He is convinced that his body won't withstand the chemo and rads, and he may be right. I guess time and the doctors will tell. I know the importance of a good attitude and I "push" it on him constantly.

I remember one of the many doctors involved so far saying that his is an "old cancer". I assume this means he's had it for some time, but just didn't rear it's ugly head to become visible.

Are there many of you who had lung mets diagnosed at the same time as tongue and neck lymph nodes? I sort of got the impression that the lung mets appeared(if they do) after the cancer had progressed significantly. Of course, since no biopsy has been done yet, it may be a different cancer.

Please send some good vibes our way. Thank you for all your help.

Luv,

Wolfen

P.S. My daughter is still doing okay, but her platelets have still not come up enough to restart Avastin(still on Xeloda only). I think her next CT is in a couple of weeks. She's been fighting for 4 years+ now.

CivilMatt's picture
CivilMatt
Posts: 2957
Joined: May 2012

Wolfen,

 

I am convinced that if he can put up with all these doctors and visits then rads and chemo will be a walk in the park.  Maybe not the nicest park, but a park anyway.  Can’t tell you much about lung mets (I am trying to stay away from that).  What I read in the H&N forum both scares and enlightens me.

 

It sounds like he is closing in on treatments and “old cancers” should be no match for him.

 

Stay positive, it helps all around.

 

Best,

 

Matt

katenorwood
Posts: 1829
Joined: May 2012

Wolfen,

Hey there !  Just wanted to let you know I'm passing on all the positives I can for you guys !  Mets are a real issue for some of us to live with.  I think it really depends on alot of factors....all that are within the realm of your doctors to answer so that you can understand it.  Mine also is an old cancer, one that alot of doctors misdiagnois.  I want you to know its o.k. to make the doctors answer any and all questions you have, or maybe I'm wording this wrong....make them help you to understand the dx....and all that it implies.  Anyway we're here for you always !   Katie

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Keep fighting and bring it to them...

As best I can rmember, their have been a few that have initial Dx that included H&N, plus Lung cancer. But like you noticed, those that have had lung mets came within a few months to a year or so post Tx.

JG

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

I'm sure once we get "settled in" with a cancer team, a lot of stuff will become clarified.

I'm sorry that I come across so negative, at times. As I mentioned before, I know the importance of a positive attitude. Unfortunately, in our family, cancer has become "all consuming" for me. Being the caregiver, mom, wife and standing on the sidelines watching my family slowly dissolve is the most helpless feeling. I want so badly to just "make it stop". Of course, the other thing that eats away at me all the time is not being near my daughter, only able to talk on the phone. In my heart, I have to wonder if she's really telling me all or trying to spare me.

For my poor husband with his "unique physique", it's a crap shoot. He's just always lived with "Murphy's Law". Sometimes I think he needs a tatoo on his butt that says "Results not typical". LOL  I certainly know that we're not alone with this syndrome. So many here and the Colon Board have their own set of unique circumstances. I also see that I'm not handling this as well as some other caregivers. Most seem to have a network of friends and family to help them through the journey. I do not. I only have all of you and my Colon Board buddies.

As of this morning, his urine output is "nil" again. But we do have a Cardio appt. in three hours. Maybe Dr. can prescribe something......or back to Emg.

Just thanks for being here for me.

Luv,

Wolfen

ditto1
Posts: 630
Joined: Mar 2012

I realize and have been personally told by friends on the site and my family to just be positive if you can.  That is so true but there is no one here or else where dealing with the beast that does not feel bad/negative at times so be assured its fine.  What I believe we need to know it not to stay in the negative and for that I work on everyday.  I hope things get better for you with both your husband and child.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

we all have infinite respect for caregivers--especially one who has gone through as much as you have. your strength is an inspiration.

we're pulling for you, your husband, and your daughter.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

If you were positive all the time, I'd have to question your sanity.  Here's hoping you start having less to feel negative about.

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

I know easier said than done but it is the only choice you have. You must not accept " He is convinced that his body won't withstand the chemo and rads, and he may be right."

You have to put up the best fight you have, anything less is cheating yourself and your family.

Stay strong.

don

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

You know it is hard to be positive all the time.  I know that feeling of wanting to fix everything and feeling like you are responsible for anything that has to be done.  It is so tiring and sometimes when we get overtired our emotions come straight to the surface.  I have been having trouble sleeping the last couple of nights.  So much to do around here, doctor's appointments today and sendig my letter of resignation all got to me.  Well this morning while we were sitting at the opthamologist in the dark, I started crying.  I just couldn't stop.  It is overwhelming and I pray that you are able to find some peace.  Don't feel bad for talking to us.  Sometimes I feel this is the only place I am able to share my fears.  It's ok, I just wish I could give you a hug.

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

Excpet I sure agree with all of them......based on your posts here ...you are about as on top of things as you can get ....your husband is a blessed man ...and never worry about feeling neg...boy I sure have been on here before worrying about stuff / and in particulare mets to lungs after my funky scan in November ....so much help on this site ....all have helped me in ways they can't imagine ....

 

So hang in there ...keep us posted.  And as I have said on so many posts tonight...I'm just delighted to be able to move through the CSN site tongith quickly and not get booted offf ...haven't been able to chat with my online family for a couple of weeks (I'm sure some on here are going, durn, Tim's back on full speed, yap, yap, yapSealed) ...and I'm really fond of the new big smile icon if you can't tell

Best,

Tim

CivilMatt's picture
CivilMatt
Posts: 2957
Joined: May 2012

excuse me just sorting threads

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