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making sure I have a hat and scarf today--UPDATE

Posted by on Feb. 21, 2013 at 7:32 AM
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I usually don't worry about having a hat on.. but Joe and I will be walking a few blocks through Philly to his drs appt. Since it is soo windy here.. and cold, I am not going to worry about my hat head..and wear a hat!  actually, I just found the head wrap that goes over one's ears...and I have a scarf that i can pull up if I need it.

Joe told our parents that he has found 2 more new lumps. Wondering if he will bring this up at the appt today. I am not sure he told the dr last time.

He told me he has things he wants to discuss face to face. Wonder if the social worker did indeed start his thought process on advanced directives. No one wants to talk about this, but I need to remember to be supportive in his wishes. I do think he knows that Deb and I are on board, so it is time to back up what we have said.

Due to the train schedule, we will get to the appt early, so we should have a chance to "chat" about it.  and I guess the train ride too.  Since most of the conversation is written, it makes it a touch easier to do anywhere.

Will have to play it by ear.

Mom and Dad actually called me the other day to see if I was going with him to his appt. I do not understand why, all of a sudden, they keep double checking with me whether I am going or not?  I haven't missed an appt I promised I would go to......


I know I will be making phone calls on the way home.  They might let me wait until tomorrow.  LOL

It certainly was a good thing we had our hats, gloves and at least I had a scarf..super windy getting to the train and through the city. 

Joe DID have the Advanced Directive filled out and has asked me to be his power of attorney. I guess I am honored he thinks I will be able to respect his wishes. He does not want anything, at all.. which I think is a better choice,considering what he is dealing with.

Later, I will suggest that he make a copy of the advanced directive, so that EVERYONE knows his wishes.  I think the part that will hit the family most, is that he asked his one friend to be the second power of attorney.Even if that is what they suggest to him, it will be a hard pill for my parents and sis to swallow.

SO basically, Joe got really annoyed for having to wait a super long time for the doc to literally whiz in, take a peek, chat a bit and was gone! I mean, I guess that is a good thing..but he normally gives more input. The doc basically saw no areas of concern.. and is pleased it seems to be status quo. SO Joe pushed for the next appt to be in 3 months.

In hindsight..although I am not going through it, Joe will just have to maintain the infusions, which are about once a month..and his pill regimine. No more chemo or radiation treatments. 

Although I mentioned that I saw that as a good sign... Joe's weariness showed through.  When I reminded him he will not be rushing here and there for tests or appts, and he can do his own thing..and keep strong... he did shake his head in agreement.

I did notice that his leg was sore by the end of the day again.Asked him if the cold bothered it, he said no. the cold basically botheres his neck.

HE has gone to a new dentist, who I think will honestly have him eating soon....I think,that will improve his quality of life..and then he is going to get a voice implant into some dentures.  The dentist who was going to do this, has not followed through on his promise.

SO it was good news, in a way... . but a long day in order to get it.




by on Feb. 21, 2013 at 7:32 AM
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Replies (1-6):
starlight1968
by Fully Loaded Diva on Feb. 21, 2013 at 7:52 AM

 hugs and hope everything works out...

sonogal
by Baby Diva on Feb. 21, 2013 at 8:10 AM

Good luck, Bren.  This may be a difficult appointment for you both.  In addition to the hat & scarf be sure you have some tissues :(  Joe is so fortunate to have you on his side.  Praying for your family.

AndrewsMomPDX
by Chameleon Queen on Feb. 21, 2013 at 9:33 AM

Stay warm and safe. I know it's an awful feeling to love someone going through what your brother is going through and to be so powerless. We pray for miracles in their recovery, but I think the miracles we often get are that we come together in a way that we may not otherwise. I'm sure your support is something that brings a lot of comfort to your entire family and Joe knows how much he is loved by you all. Hugs and prayers.

firemouse23
by Queen of the Divas on Feb. 21, 2013 at 11:55 AM

Praying for you today.  I know your brother is thankful for being able to rely on you to be there for him and have his back through this.  Your parents are probably having a hard time dealing with what is happening and are going to be 2nd guessing everything going on right now. I'm sure that is why they call you to double check everything for appts.  He can probably feel the changes going on because he is hyper aware of them right now.  I'm sure he will mention the new lumps as it could change the direction of the treatment he is getting.  Stay warm and we safe today.

Melinda67
by Dungeon Queen on Feb. 21, 2013 at 4:42 PM

praying

firemouse23
by Queen of the Divas on Feb. 22, 2013 at 12:06 PM

I'm happy to hear the dr isn't concerned about anything new.  It may have been a long day but you guys did get some quality time together that no one can ever take away from you.  Glad you had planned in advance to stay warm...ish.

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