New Battle - Page 4

Laurel · 12-20-2012, 04:09 PM

Hey Barb!

Just wondering how the eye, and more importantly your spirits, are coming along? How's the double vision?

Hoping you have had some peace, shalom, settle in. The worst is the waiting and that wicked fear-monster stalking your thoughts. I keep standing in the gap for you. Your cheery snowman reminds me!

You folks have any hope of a white Christmas? We are definitely too warm down our way. I just put up the tree that I bought up at the 42 Market today! Absolutely pathetic....me, not the beautiful tree! LOL!

ammebarb · 12-20-2012, 05:16 PM

Hi Laurel. So good to hear from you. I think the eye is doing just what it is supposed to do. Right now, it's a bit scratchy....was warned that the stitches would make it feel it like that. Still have double vision, but I don't expect that to improve immediately. The emotions are like a roller coaster ride....yesterday seemed a bit better, but today was a bummer. You are absolutely right about the fear monster stalking the thoughts. As was true with each of my bouts with cancer, the mental/emotional is the hardest part for me. Resting, praying, giving myself stern admonitions, and praying some more. Bless you for thinking of me.

Barb

Pray · 12-21-2012, 01:09 AM

Barb, hoping and praying all will go well for you!

ammebarb · 12-21-2012, 04:23 PM

Thank you, Nancy. Sending warm regards to you.

Barb

Laurel · 01-07-2013, 06:22 PM

Barb,

Just wanted you to know you are in my thoughts and continued prayers. Any new news? Scans scheduled (sorry cannot think when you said you were going to try to get those on the calendar)? Hoping you will have your results soon. Are you having them sent to you as we discussed?

I am trying to slip away to head up north, but holidays, etc, have kept me home.

Keep battling that fear-monster.

ammebarb · 01-08-2013, 06:53 AM

Good morning, Laurel. It is so good of you to ask. My labs are tomorrow (ordered by pc), and then I have an appointment with her next Wed. She'll order the scans then. Wills gave some lee way about those. Apparentely they can be CT or MRI. They do want them with and without contrast. No news from Univ. of Pennsylvania about the genetic testing. I called a couple of weeks ago to ask how I'd receive results and they said that they would be sending a receipt when they knew if they had enough genetic material to test. When they send the receipt, they will give me a choice about how I want to get the results. Have heard nothing yet. I'm anxious and depressed, but not as horrendously low as I was earlier. Grabbing onto hope, praying, and taking my ativan!

Bless you for being in touch.

Barb

Soccermom · 01-08-2013, 08:45 AM

Barb,
I've been thinking about you too. I wish there were more to do than just say "hang in there".. Sigh. Please find moments in the day to meditate and find some peace.

Gentle hugs,
Marcia

ammebarb · 01-08-2013, 04:25 PM

Thank you so much Marcia. It is the peace that is so desperately needed. Today retired teacher friends came and brought pizza for lunch. We had a good visit and it was such a nice break to think of other things for a while. I appreciate your thinking about me.

Barb A.

Pray · 01-08-2013, 10:29 PM

Barb, I am so happy you were able to have a lovely afternoon with friends. Gods blessings are all around you. Peace my friend, Nancy

ammebarb · 01-12-2013, 07:41 AM

Seeing my pc this week and expect she will schedule scans (chest, with and without contrast; abdomen with and without contrast to focus on liver). I have had the labs for liver. These are at the request of the ocular oncologist and I've now decided to consult with oncologist who specializes in follow up for ocular oncology, as well. He wants specific and rather more detailed tests that detect mets. Would appreciate some prayers as these scans are done.....my appointment with him (Sato at Univ. of Pennsylvania) isn't until May 1, but I'm hoping I can know how the tests are from my pc who is ordering them. Sato's office did say that if there is a problem, they will see me sooner. See the retinal specialist Jan 30 and the ocular oncologist who did the surgery in early April. Still no results from Univ. of Penn. on the genetic testing. It's like a wild roller coaster ride....sometimes I'm doing ok and sometimes I'm a mess! I know that if anyone understands the emotional part of this journey, you dear ladies do!
Barb A.

NEDenise · 01-12-2013, 08:48 AM

Barb-
Prayers headed your way. My docs are all at Penn, and I haven't met one who wasn't top notch...brilliant, and compassionate...I hope your experience is similar.
Breathe deeply...trust God to take care of things for a while...
Denise

ammebarb · 01-12-2013, 06:46 PM

Oh, Denise, thanks for the continued prayers. You are often in mine too. Where near Philly do you live? You'd have laughed at these country bumpkins getting lost in Philly when we were there for the plaque therapy.....Just not used to city!

NEDenise · 01-12-2013, 09:23 PM

Barb,
I live in Lansdale. And, no, I wouldn't have laughed at you for getting lost in the city. Before BC rocked my world, I NEVER drove to the city. But when I had to be at Penn for radiation...every day for a month...I just gritted my teeth and did it. Now, I'm a pro! I not only drive into town on my own, I've even driven across town when the need arose! (The GammaKnife center was about 30 blocks from my regular hospital) And, I haven't gotten lost once!

I do have to admit though that one day, on my way into the city, I heard on the radio that the expressway into town was closed because of an accident...so I had to call and cancel my appt fr that day...since I know exactly one route into the city! No detours for this girl! The doctor's office graciously rescheduled for the next day. The receptionist apparently only knows one route too!! She totally understood my dilemma.

Is the doc you're seeing at the Abramson Cancer Center? Hosp of the Univ of PA? Pennsylvania Hosp? Rittenhouse? Wouldn't it be great if one of these days our schedules had us both in Phila on the same day! We could catch up over a nice cup of coffee!
All the best to you!
Denise

ammebarb · 01-13-2013, 06:50 AM

Good morning, Denise. You are kind to say you wouldn't have laughed at us when we got lost....I felt like the Beverly Hillbillies! Then, the day the plaque was to be removed, our GPS didn't function, probably because of the parking garage and tall buildings. We were only blocks from Wills Eye, and so totally "turned around". My phone finally saved the day..I also realized that even if we were late, they were hardly going to allow a radioactive plaque to remain in my eye!

I think I goofed when I said that Dr. Sato was Univ. of Penn. That's where the genetic testing is being done. Sato is at Jefferson. (That isn't part of Univ. of Penn. is it?) Jefferson is the Kimmell Cancer Center and is right near Wills.....at least we know where we are headed for this appointment.

I will see Shields and Shields, at Wills on April 2 and 5. Recheck on the second and a shot of avastin and possibly laser procedure on the fifth. They only schedule consecutive days for people who are traveling huge distances.

I would love to meet you! If we need a trip during the summer months when you are on break, maybe we could arrange it.

Hugs,
Barb

Mtngrl · 01-13-2013, 10:36 AM

Dear Barb,

I've been off the board for awhile, so I just now read through the whole saga. I'm a melanoma survivor myself, and I totally "get" your fear and anxiety about it. My first thought when they told me there were suspicious lesions on my liver and lungs was, "I hope it's not melanoma."

I agree with those who've said you're one of us, no matter what. I will hold you in prayer too.

As for getting lost in Philly, I know about that too. I lived there for two years, and it took forever to get a mental map of the city. Then I moved to Boston, and suddenly getting around in Philadelphia seemed easy.

I pray for peace and healing for you, and for good test results and scans. I pray that whatever happens you will have all the tools you need to meet the challenge. I pray that you never forget that God loves you unconditionally and will never abandon you, and that, no matter what, you are held in the hands of God and you are perfectly safe.

ammebarb · 01-13-2013, 11:57 AM

Thank you so much for responding, Amy. I am alternately an emotional mess and relatively calm....what a roller coaster! I so appreciate your prayers. I send my best wishes and prayers for you too.

Barb A.

Laurel · 01-13-2013, 02:55 PM

Barb,

Let us know when your scans are slated so we can have your back even more intensely. I know exactly how you felt driving in the big city! Philly is easier than most cities for the most part I think. New York is totally nuts, but then again, Boston is wicked too! Give me Sully County any day! I honestly think you have to put blinders on when you drive in large urban areas. Otherwise you'll just scream, cover your eyes, and hope for the best!

Paty · 01-13-2013, 10:14 PM

Barb,

Just to let you know that I am thinking of you and praying for your health. Sending you hugs and all my love.

Paty

ammebarb · 01-14-2013, 07:07 AM

Thank you so much Paty. I am really appreciating the prayers, hug, and love. Laurel, I will post when I know the schedule for my scans. I hope they can be relatively soon....This waiting is the pits!

Barb A.

ammebarb · 01-14-2013, 02:48 PM

Got my receipt from Univ. of Penn. for the genetic test today. Cover letter says the testing will be complete in two weeks. They can send results or hold until I go back to Philadelphia on Apr. 2. I am going to have the results sent.....