Marie..... How did WED. appt go??

pattyz · 11-16-2008, 10:01 AM

Have not seen an update post, sorry if I missed it.

I know you were feeling the tummy shivers about 'what next' and all....

Any plan? Hope it was an appt. you ended feeling satisfied with, at the very least.

Concern and hugs,
pattyz

pattyz · 11-17-2008, 05:09 PM

Ok. well now I'm worried more than usual. I hope the appt. came with a good/acceptable plan for Ed.

Will be off line until March sometime... don't be offended if I don't reply back, should you write an update.

very best wishes,
pattyz

StephN · 11-17-2008, 07:20 PM

Also, hoping for some news on Ed.

Bon voyage, Pattyz.
Enjoy the warmer climes. I think this is getting to be an annual thing with you and your hubby - to do the snowbird thing.
Stay well and show those brain mets who is BOSS!

pattyz · 11-18-2008, 07:35 AM

Well Steph...

Once again, I am just extremely LUCKY... Lucky that Lyle is able to make the drive at age 71, and that his bc is 'behaving' on the Tamoxifen. I used to help w/ the driving, but not for the past six yrs.

If I can't get out over winter nor see some sun, I go down hill even more than currently. I look at it as another 'medicine'.

So, still concerned about Ed and Marie.

Believe51 · 11-18-2008, 12:27 PM

Sorry to make you worry about us. There have been alot of things going on here and the ole mind is tired. Here is a quick update on Ed:

Appointment with GammaMan:

Very pleased to see the 10 spots are shrinking and dying from the first Gamma Knife. Margins are clean and this one (and I say one right now) is 5mm. I was hoping NOT to have him do another Gamma for just one spot.....to go through that for one area when we do not know what others shall arrive, and they shall. I asked if we could wait a little while to see if any others declared themselves in a few weeks. Doctor agreed that waiting would allow them to present themselves if they were brave enough to! I like how he thinks.

He is not even going to make an appointment for this Gamma or another MRI. When Ed is ready to get 'rayed' he can just call. We really need to get the pain in his back under control since he managed to shimmy the matress from underneath him during the Gamma Knife; they said they never seen anything like it in all the years of 'raying' people. Going by the past mets in the brain....they are no masses, no edema, clean margins and nice and round. Doctor feels that this is all good signs that we can wait several weeks to see any pronouncment of more mets in this case.

Appointment with OncoMan:

Ed has had a battery of testing including but not limited to a bone scan. The doctor has been watching this area quite closely since the beginning. The bone marrow looks suspicious but Leukemia is ruled out, thank goodness. We have managed to get Ed to take more of the pain meds but he really had no choice since he was unable to walk at times. He will start a chemo regime quite soon. Waiting for results of one more test in order to make an educated decision. We are also talking about other stronger meds for pain. If the problems in the cervical spine are from nerves pressing from disc pressure, well, we will not go there yet. It involves a balloon insertion that will be filled with cement-like compound that will allow seperation between the discs, yuk! Hopefully these problems are not a spinal collapse that we knew 'could possibly' happen. Praying that the Zometa is working the wonders it once was.

Summary:

Ed hopefully will be taking the Tykerb/Herceptin mix. Both drugs have been used seperately and failed, or should I say that the Taxotere and Xeloda finally failed him. We are really looking forward to this mix as we feel it would pass the blood/brain barrier and aid in preventing further brain mets. Let's face it, it is a double whammy for the cancer cell. People are also having great results with this combo. This is the third time with brain mets in 16 months, so you can imagine that I am scared about what is happening here!

Question and Honest Opinion:

**Do you think waiting a few weeks is something that you could do?
**Do you think this is a wise choice on our behalf??
**How long would you wait??

Remember this is an honest answer, do not worry about my feelings here. My heart says yes but the mind says no. No sugar coating please, it is killing me and I need your honesty. By the time we get the Gamma Knife done it will be very close to the holidays and I do not want to see him sick then.

PS: Whatever the case, when Gamma-time comes, Marie will be on her own meds...hahhahaha!

Sorry to make you worry, I have been so depressed lately (other things) and my anxiety is kicking my butt!

Onward>>Believe51

See you in March Patty, love ya!!

Mary Jo · 11-18-2008, 01:07 PM

Hi Marie,

I have no answers to your questions although I don't think there is a "right" or "wrong" answer here. The reason for my post is to simply tell you and Ed, that I am sorry you both are having to go through this. It is so hard. Being a caregiver is one the hardest "jobs" out their. Your love for your dear Ed makes the job almost unbearable at times, I am sure.

I pray that just knowing I love and care for you both will help today be just a LITTLE better.

I wish I could step in for just a while and carry the burden for you and you could forget it for a while but sadly, I cannot.

Love, God's Peace and a hug from me to you both. Please know how much I care and hurt for you both.

Mary Jo

Believe51 · 11-18-2008, 01:31 PM

I may be a decent caregiver but I know I would be an awful patient. In answer to your response would be "Do not hurt for us Sweetheart", please do not hurt or atleast for too long. Your support and love for us allows us to be able to bear another day dealing with things like this. Although this is an ugly saga, I could not think of a better place to be. Well, besides sitting on a cure (wink).

Your love does make me feel better. We are surrounded by love and support, things that others may be lacking. I am so blessed, as we all are, to have a place to come where everyone understands. This is that place, this is our home. As Rich stated in a seperate post, he feels sorry for those who do not have an advocate to decipher what is in front of us, I do too. Luckily, we are each others advocates, we can come here to decipher, to gather ammo for these appointments. Cancer has entered our lives but thankfully we have a haven her at Her2, a family like no other.

I love you Marejo, wrapping you arms around me, praying for us to fight and win, your supportive words....they reign supreme in my book. I am so blessed to have friends like you in our corner.

Thanks for taking my pain and making it your own, how utterly unselfish. Then again, "That is just the way you wis (yes...wis)!! I love you more with each day that I know you. Now while you stop hurting....I am gonna get that pretzel recipe and gorge myself tonight!! LOL>>Believe51

PS: Instead of bows and wrapping paper for gifts, I use lace, toule and creative touches instead of a plain bows. I will be dipping these pretzels in dark chocolate and adding them to my gifts instead of that bow. That is, if there are any left! Gulp!

schoolteacher · 11-18-2008, 02:21 PM

Marie and Mighty Oak,

Both of you are in my thoughts. I hope you find the answers and peace that you seek. Remember, you are in my prayers.

Amelia

Mary Jo · 11-18-2008, 02:29 PM

Thank you Marie for your kind words to me. You want to hear something funny??? (ok, I'll tell you)......Before I hit "post reply" on the last post I typed to you I contemplated removing the part of my post that said I was hurting for you both. I kept reading that over saying to myself......."self, if someone said that to you, you wouldn't like it. You don't like people feeling sorry for you and you surely wouldn't want someone to be hurting for you." But against my better judgment I left it in their and yup, I should have taken it out. Marie and Ed...... I do hurt for you both....and I can't help it. But, that being said, I totally agree that this place is a wonderful place for support and love and I am thankful I have it and thankful YOU have it too.

Also, I know that as much as this disease "hurts" and is cruel it also can bring so much to our lives (not the cancer per se - I WOULD NEVER want to give cancer any kind of credit - but going through what we go through teaches us so much.......... it brings countless blessings to our lives and teaches us how to value life. God is still good - even through the bad - because He doesn't cause the bad to happen. He loves us incredibly and it's taught me to lean heavily on Him - to take His peace and love He offers freely and to live in that until the Day He calls me Home to Himself. That's what keeps me going each day and it's also what makes me the happy person I am. I wasn't this happy before my cancer diagnosis BUT I am now - SO.........TAKE THAT CANCER..............!!!!!

What does "wis" mean? I tried and tried figure it out but don't have a clue.

Well Marie and Ed......here's another hug......you feel it??? Please do - it's warm and gentle and I'll just keep holding you until you want me to let go.

So, I still hurt for you BUT it's all in a good way. It's just what people do who love other people and don't want them to experience any pain. You'd feel the same for me if the shoe was on the other foot.

Love you guys.........eat chocolate now........it's good for the soul.

Mary Jo

tricia keegan · 11-18-2008, 02:32 PM

Marie, I was glad to see you post and am so sorry I don't know enough about all this to give you an educated answer. I know some of the member's here who have dealt with this or similar will point you on the right track.
Just sending you lots of positive thoughts and warm wishes.
(((((hugs)))))

Believe51 · 11-18-2008, 03:00 PM

You should have left it in, I hurt too for others here and this we cannot deny. I just hurt hearing you hurt.

"Wis" is just wus talk. Yes you wis. Talk to kitty like that.

Love you dearly. Now...off for ala chocolat!!>>Believe51

Sherryg683 · 11-18-2008, 08:03 PM

Marie, I am not a "patient" patient either. Could I wait weeks before having something done, probably not. Does it make sense to wait and see if others pop up and then treat them all, yes it does. If your doctors think this is OK, then it's the logical thing to do. How long could I wait...I don't know, probably no longer than a month, if that long. I tend to panic and want things done NOW. You have been such an angel to Ed and to all of us going through this. I can't tell you what to do, just know I am thinking of you and Ed....those pretzels sound fantastic..sherryg683

Joan M · 11-18-2008, 08:53 PM

Marie,

I'm praying that all works out for Ed in getting the new brain tumor zapped and then after that he'll have no more!

Joan

SoCalGal · 11-19-2008, 12:18 AM

Hi Marie-
Since I had a brain situation I want to add my 2 cents. I waited 4 weeks to re-mri to determin if what showed up was growing and how fast. Since it's in the brain there's not much wiggle room for symptom free-ness. After one month my met grew enough that they wanted to gamma asap. Before it got bigger and touched something important - like my shopping navigator as an example. So I'd recommend re-scan in 4 weeks. If it's really grown then you can gamma right away. He's going to be scanned pretty often so if anything else appears they can zap it then. The Tykerb Herceptin is a good combo - good synergy. Take care-
Flori

Joy · 11-19-2008, 05:07 AM

and thinking of you so much. So grateful for your update. But also so in awe of the strength the two of you possess. Ed is a mighty oak and you are a hearty maple or tall redwood or some other impressive, beautiful tree. I think your approach is very prudent and I would also listen to Flori's words of wisdom as they come from experience and good brains. Get that pain under control too as that stress as you know is just so wearing. So much love to you both. I am having a decadron night so I am just waiting until a resonable time to make a latte. I will look east and with a foamy mustache, toast you both with the simple pleasures in life.