New Battle

[ammebarb]

Not related to this group, but you have all been so kind as I've asked for support for my dear sis during her HER2 journey.....I was told yesterday that I have a cancerous melanoma in my right eye. I had breast cancer twenty nine years ago, endometrial cancer four years, and now a third one. Not much known yet. I'm waiting over this Thanksgiving holiday for arrangements to be made for The Wills Eye Institute in Philadelphia, to see me. My dear sis and her hubby will go with me and my husband. First prayer is that there are no mets...most obvious places are liver and lungs. If none, then I'm hoping they can use the radioactive plaque to irradiate the bugger. Back to scans and exrays every six months, if I'm lucky and there isn't distant involvement right now. I'd really appreciate your prayers, ladies. Thanks.

Barb A

[Mary Anne in TX]

Barb, you'll have my prayers and good wishes for your trip.

[tricia keegan]

Oh Barb I'm so sorry, sending good wishes for you! x

[Paty]

Barb,
Praying for you, hoping this problem is just local and has not metastized. Pls. Keep us posted and do not loose hope, there are always treatments out there.

Love,

Paty

[ammebarb]

Thank you for your well wishes, Paty, Tricia and MA. You all know the awful initial fear.....that's where I am now. Hope to get to Philly soon and not drag out the wait.

Barb A.

[Jackie07]

Barb,

First of all, Happy Thanksgiving!

It's not fun to have multiple cancers. But it happens - especially to those of us who have had certain types of genes (or gene defects! :)

Hang in there. The plan you've mentioned sounds pretty good. Take good care of yourself and come here for support anytime!

[Jean]

Dear Barb,
I am sorry to hear your news. Of course I will keep you in prayer. It is upsetting to have to wait until after the holiday weekend. Please keep us posted.

Kindest Regards,
jean

[Paula O]

Dear Barb,

I'm hoping things go very, very well for you.

(((Hugs)))),

Paula

[Ellie F]

Hi Barb
Just wanted to share some information with you. A couple of weeks ago a television program featured a young women with a melanoma also in her eye. Apparently it is quite rare however once they had removed it and given her treatment her prognosis was reported to be very good due to the pathological type
In the meantime I am praying for you and hoping you have this type also
Ellie

[ammebarb]

Thanks so much for the continued wishes....it is amazing how much comfort comes in the form of warm support from friends. Ellie, I hope my path type is the same as the one you saw on tv. Praying hard for no mets, at the outset. If this tumor isn't too large, they will implant a plaque shield that will deliver radiation over a period of days. Will stay in accommodations arranged by the hospital and then have the plaque removed. The tumor is to continue shrinking over a period of three months. There may be additional treatment if needed. If tumor is too large, the eye will be removed. Not a happy thought, but I'm aiming for life, so what has to happen will happen to give me my best chance. Thank you so much for your love and support. I'm scheduled for a consult at 7:30 at Wills Eye. Hopefully surgery on Thursday. I'll be quaranteened in a motel room for the time the implant is in, so I'll take my computer and hope to be updating.

[karen z]

Barb,
Very sorry to hear this news. Please stay strong and keep us posted. Know that you are in our thoughts and prayers.
karen z

[Lani]

http://www.nytimes.com/2012/07/10/health/genetic-test-changes-game-in-cancer-prognosis.html?pagewanted=all

[NEDenise]

Barb,
Thinking positive thoughts for you! And, of course, sending prayers too.

Looking forward to reading your post surgery updates!
All the best,
Denise

['lizbeth]

Thank you Lani - very informative.

Barb - wishing you a very successful treatment and Class 1a melanoma.

[BonnieR]

Not much to add except ever since I was a child in the Phila suburbs I have heard only wonderful work being done by Wills. Great that you have access.
Keep the faith.
PS. what were your symptoms? I have a nasty thing on my eye right now.....

[Pray]

Hoping and praying all will go well. Gods blessings to you and your family. I look forward to your future posts. (I pray all are positive.) Your friend, Nancy

[ammebarb]

Thank you, thank you, thank you, everyone. Bonnie, I had floaters and flashing lights in my eye. Thought it was a detached retina. Saw an opthamologist in the practice that had done my cataract surgery in January and he referred me to a retinal specialist on the same day. That doctor called a world class Wills doctor and they made some very rapid arrangements. We will leave tomorrow so as to find the facility before our 7:30 a.m. appointment on Monday. I am taking some ativan, so I alternate between relative calm and falling apart. Again, thanks for your well wishes...they mean the world to me.

Barb A Prayers gratefully accepted!

[tricia keegan]

Keeping you in my thoughts and prayers Barb, stay strong! (((((hugs)))))

[Jean]

Barb,
Praying for you, as they say "good things come in small sizes" now let's pray that the tumor is small and you will have those three months for it to shrink.
The last few years there has been a huge leap in eye surgery and treatment. You are in a top notch facility, so with prayers and great treatment we send you healing wishes.

Kindest Regards,
Jean
PS the waiting is the hardest.

[BonnieR]

Barb, it is always amazing how the things we share here impact each other. I asked about your symptoms because I have a infection/growth, probably a nasty sty, on my eye. But your reply has given me pause. I have recently developed major floaters in both eyes. One doc called them "impressive'. They have been seen by MDs and deemed to be just bad floaters, but I never would have thought of other ramifications. I am sorry you are having this experience but grateful that we can learn from each other and be vigilant. We are here to hold each other up and share experience, strength and hope.
Keep the faith.

[Laurel]

Barb,

Man. I am not happy at all to hear your news. I hate Melanoma and I hate that it has darkened your door. Lani's informative post regarding the two forms, Class 1 or 2, leads me to pray yours is Class 1.

I have not been able to get up north in quite sometime. My mother's care has grown considerably and she is loath to leave her chair let alone her home so I cannot bring her along to the cabin. As soon as I am able we'll get together to celebrate the forthcoming good news that I am believing you will hear from Wills. Until then hang strong even though I know that is monumentally tough at the moment.

[Kellennea]

Prayers going up!

[Laurel]

Thinking of you today, Barb.

[BonnieR]

Hi Barb, I happened to be seeing my eye doctor/surgeon today and I mentioned your situation to him. He said what a top hospital Wills is. He also commented about all the advances in recent years to treat this sort of melanoma. It sounded like the sort of message we have had about how Herceptin changed the playing field for us. So I hope for only good news. Keep the faith. And keep the Ativan handy, too!

[ammebarb]

Hello ladies. Well, we spent eight hours at Wills yesterday, and just heard that U am on their surgery schedule for Thursday. The docs will place a radioactive placque implant that will remain for about seven days, while hubby and I , sis and brother in law hang out in the center city Philadelphia hotel. I'm confined to my room for that time. Released to home the day they remove the plaque. Having genetic testing done that gives info about liklihood if spread......mixed feelings. Then going back to my old oncologist for follow up. Also have a retinal specialist in my area who will put shots of avastin in my eye. There is als an oncilogist at Jefferson whose speciality is ocular melanoma metastasis....hope I don't need hum! Thanks for listening, my her2 friends. All prayers gratefully accepted.

[prolifejoan]

Dear Barb,

I am praying hard that all will go well with you at Wills and that there will be no mets, and that recovery will be thorough and as soon as possible. Bonnie, please know that I am praying for you, too. I am praying for all to have the peace of God in their hearts, and praying this for myself also. May God bless you and I hope with my whole heart that all goes well.

[Laurel]

Barb,

I am believing you are Class 1 and so lots less worry about mets! We'll get together and you can show me the Hillsgrove covered bridge (haven't found that one yet). My son is up your way hunting (hanging at the cabin and drinking beer more then hunting is my bet!) and will bring down a Christmas tree from the 42 Market. Theirs are cheap and they have some small enough to fit on a table which I prefer these days (less to put up and take down!).

Will you have much discomfort associated with the implant in your eye? I surely hope not! When you get bored of the hotel room's 4 walls, type us an update. What did you think of Wills? Impressed?

Blessings to you, my friend. I am praying.

[Pray]

Barb, I'm in your corner hoping and praying all will go well. Gods blessings to you and your family. Looks like you have some great support!

Peace my friend,

Nancy

[Laurel]

Good luck tomorrow, Barb! Prayers for an easy breezy procedure. You have not been far from my thoughts. Praying for good news.

[Jackie07]

Adding my prayers. Remember to take deep breaths...

[Laurel]

Checking in, Barb, to see how you are faring. Hoping that you are not in pain. Praying for good results!

[ammebarb]

Hello ladies. I am doing ok physically, since my implant. Afraid to take the vicodin, cause I am so allergic to pain meds. Using tylenol and advil, and some atavan. Implant done Thursday and comes out Thursday. Even possibilities of radiation damage to the eye doesn't bother me as much as fear of mets. I can know that one can only live in the now, but keeping a reign on a racing mind is so, so hard. I would appreciate your continued prayers, both for healing and for peace.

[Pray]

You are in my prayers. Gods blessings to you.

[Laurel]

Praying. Glad to hear it is not too painful. How long do you have to hang in limbo as far as pathology and scan results? I do not blame you one bit for the nerves. This roller coaster is so hard. Hang in there.

[ammebarb]

Hi Laurel.The genetic testing takes three months to come back. They are saying to arrange liver scan and blood draw within a few weeks. Back to my old oncologist, if he'll see me. Appointment with retinal specialist in two months and back to Wills in four. As I undersrand it, the worst genetic profile means a 50% chance for metastasis. Best profile means 20%. Gotta just pray and not borrow trouble....much easier to say than do.

Thank you to all you dear ladies who have sent words of kindness and support. I reread them at 3:00 this morning.

[ammebarb]

Plaque removal in a few hours. Trying hard to concentrate on getting through what is immediate. I'm very grateful for your kind messages and especially your prayers.
Barb A

[Soccermom]

Ameebarb,just want to send gentle hugs and let you I'm thinking about you. I'm originally from the S Jersey area and have had family members treated at Wills.. Outstanding facility!
I'm just wondering if your Onc has discussed genetic testing for the BRCA genes? Their is a link between BRCA 2 and ocular melanomas. This might give you additional options for your treatment arsenal. Forgive me if bringing this up brings you more angst.. but I felt it important to bring up.
If you like, I would be willing to post articles relevant to BRCA and OM.
Praying for good result
Gentle hugs,
Marcia

[ammebarb]

Hi Marcia. I agreed to genetics testing, but the counselor didn't go into huge detail regarding which genes were being tested. I'll find out more when the results are in, and we talk. Being done at Thomas Jefferson.

Barb A.

[BonnieR]

Barb I love how you asked for prayers for healing and PEACE! What a wonderful concept. We all so need plain old peace
Keep the faith

[Soccermom]

Barb, Thinking of you today and hoping youre not in too much pain and that procedure went smoothly yesterday,
Jefferson is an outstanding facility! If BRCA testing is done will be sent out to Myriad Genetics (they hold the patent on the test)and should take a couple of weeks.

Gentle hugs,
Marcia

[ammebarb]

Hello girls. I am only a little uncomfortable since the removal of the plaque yesterday. My much smaller patch can come off tomorrow, when I will begin eye drops and an antibiotic in my eye. Marcia, the testing is supposed to take about three months. I still have trepidation about having the testing done. If I find out that it is a class one tumor, I'll be vastly relieved. But if it is a class two, there isn't much to do about metastatic liver cancer. There is a Dr. Sato who will talk to me, if the genetic test warrants it. Nerve wracking times, for sure!

[Soccermom]

Barb,
The testing is being done is to determine the characteristics of the ocular melanoma. BRCA testing is different in that identifies mutations in the BRCA genes (which are tumor repair genes, which if working properly do just that) We all have 2 copies. It is done via blood draw. The reason I brought it up is because of your prior history of two non related cancers. There are targeted therapies much like Herceptin available in clinical trials for those who test + for one of the mutations.
I know this is a lot to digest right now.. No hurry.. But thought discussing it with your Oncologist might be helpful.

With love and prayers,
Marcia

[ammebarb]

Hello everyone. I was able to take the ligthweight patch off of my eye this morning and begin putting medications in. They had me all prepped for seeing a nasty, nasty eye. It's not pretty, but not really as bad as I anticipated. I am having double vision, but was prepped for that too....had to cut muscle to get the plaque in. Muscle is now reattached, but will need some time to strengthen. Vision is crappy right now, but hoping it will improve with healing. (Just in time for the radiation damage to "kick in") My fears are still about mets.....know you all understand that. Thank you all so much for listening to me.....I've invaded your bc group with a totally different cancer...You are gracious and kind to respond so lovingly.

Barb A.

[BonnieR]

You stop that right now, saying you have invaded our group! Besides, you once had BC so that makes you one of us forever!
I'm sure everyone would agree that we are here for you. And you are making us aware of an area that was unfamiliar. A part of our education.
Keep the faith.

[ammebarb]

Thank you, Bonnie. This is certainly a loving, caring group. I have appreciated you from the beginning of my sis's bc journey, but I'm especially grateful for all of you now. I'm gradually seeing a bit more out of my affected eye and I'm glad that while it is uncomfortable, it is not painful. I'm having a miserable time with the emotional end of this .....lots of being scared and weepy. Bless you for being here!

[Laurel]

Barb, I am afraid you are stuck with us and us with you FOR A LONG, LONG TIME! Glad to hear the eye is less shocking then predicted, but sorry to learn you must deal with double vision. I think that would make me battier then usual! How do you cope with that?

Might be headed your way this week. Never did get that Christmas tree, so if I can steal a bit of time I will trek north to clean up the cabin after the intrepid hunters and grab a tree. Think you might be up to a cuppa coffee? I can come to you. No worries if you do not feel up to visiting and no guarantees I can get away.

[ammebarb]

Good morning, Laurel. I'm continuing, one foot in front of the other, as is the only choice. The eye feels better each day. I'm doing ok about the double vision because my doctor assurred me that it would clear when the muscle recovers.

I'm having a miserable time with fear of metastasis. And even as I say that, I know that I'm writing to a group whose sisters deal with mets.

If you come to the area, I'd love for you to visit. Do you still have my phone number?

Barb A.

[BonnieR]

Barb, do you still have Ativan? I recommend a bit to take the sharp edge off the anxiety and keep the faith

[ammebarb]

Thanks, Bonnie. I am taking the Ativan, and I'm sure it's helping, but I'm still mighty shakey. My daughter is dealing with some problem with her esophagus and anxiety and I'm also very concerned for her. She's trying to work while worrying about me, fearing pain in her chest and making mistakes at work. Praying, praying, praying......

[BonnieR]

Just read a good quote from Abraham Lincoln: "the best thing about the future is it only comes one day at a time". Keep the faith.

[Soccermom]

Barb, as Bonnie said, you are one of us.. Period!
My heart is so heavy for you and I am praying!
Ativan was my friend (still is) when the anxiety us overwhelming , don't be shy about needing it. We've all shared your feelings at one time or another and we care.. We truly do care. I wish I could make this all go away for you and everyone else living in limbo,

Gentle loving hugs,
Marcia

[ammebarb]

Thank you, Bonnie and Marcia.

[Pray]

Barb, You can count on me for prayers. You and your family are in mine everyday. Gods blessings to you and your family.

Peace my friend,

Nancy

[ammebarb]

Those prayers mean the world to me, Nancy. Thank you, thank you. Please continue.

[Laurel]

Barb,

I totally get the anxiety crescendo you are experiencing and I agree Ativan is a godsend in times such as these. I think I will be able to get up your way at the end of the week. I will PM you to confirm and yes, your number is in my cell.

I am really sorry you are going through this nightmare, Barb. Hope to bring some cheer your way!

[Soccermom]

Thinking of u,Barb..XOXOXO

[ammebarb]

Thank you, Marcia. The eye is healing as it should, I think. The mental, emotional healing is slower....Praying, resting, giving myself pep talks, relying on the love and prayers of family and friends. Bless you for thinking of me!

Barb A.

[Laurel]

Barb,

It was wonderful visiting with you and Brooke this week. I hope those books are lifting your spirits and fortifying your faith. I have your adorable snowman needlepoint by my favorite recliner (we old farts all have one of those, don't we? LOL!) and he reminds me to pray for you every time I glance his way.

When I was diagnosed and living in the awful limbo of "what if-ville" I used to sing to myself that song from Veggie Tales called God is Bigger Than the Boogie Man!

Oh God is bigger than the boogie man
He's bigger than Godzilla or the monsters on TV
Oh God is bigger than the boogie man
And He's watching out for you and me!

BTW, everyone, Barb's eye looks terrific. If you did not know she had surgery on it, you would not ever notice anything was remiss.

[ammebarb]

Hi Laurel,

The eye continues to feel a bit better each day....still bloodshot some, but not uncomfortable until the end of the day. Probably eye strain. Fighting for attitude in a big way. Praying, reading, resting and praying some more. I'm thinking that some radiation fatigue is setting in.....I'm really tired.

I so appreciated your visit. Touched me hugely that you would come to see me. Bless you, bless you.

Barb A.

[NEDenise]

Barb,
So glad that you're on the road to recovery! Rest all you want! It's likely just the thing you need.
Sending a warm hug, and healing prayers your way!
Denise

[Laurel]

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]

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]

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

[ammebarb]

Thank you, Nancy. Sending warm regards to you.

Barb

[Laurel]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.....

[Laurel]

So you had enough of a specimen for them to do the testing with! Yea! 2 more weeks of waiting. Almost scary to have the deadline, huh? Still, better to know and you already know I am believing for good news. Headed to post office to mail you something tomorrow. Caleb went to UPS for me last week, but the stinkers will not mail to a P.O. box! Nothing is ever simple, is it?

Hang in there!

[ammebarb]

Good morning, Laurel. Yes, getting the receipt from Univ. of Penn was anticipated, but it kind of "threw me" too. Kind of surreal to expect a prognosis in the mail. I didn't want to wait until my April appointment to get the news, which was another alternative to receiving news by mail. Still have such mixed feelings about having this info. Many in the ocular melanoma community do not opt for it, or are not given the option. Ah well, I agreed, so it's coming whether I want it to or not! Thank you for expecting good news.....I try.

Sweet of you to be sending me something. I'll be looking out for it!

Hugs to you. Barb A.

[ammebarb]

Just back from appointment with pc doc and was told that my liver panel was a-ok. It's not any kind of decisive indicator, that's why scans are being scheduled. But, I'm taking that little bit of news as good news. Now, to get the scans done and get results. My Dr's. office has a patient portal, so I can check out results online. She knows I'm anxious, so I think she will enter the results as soon as she has them. Thanks again to all who have been praying for me. Please keep doing so!

Barb A.

[ammebarb]

MRI of abdomen is Monday and CT of chest is Wednesday. Scanxiety is rearing it's ugly head!

Barb

[NEDenise]

Barb,
Still praying! Still focusing energy on "Good News for Barb". You're due for a nice long break right about now, my friend!

Sending love and a big hug!
Denise

[Soccermom]

Barb.. Wish I could give you a hug in person.. Waiting just stinks!
Since you'll receive your results in the mail you may have a million questions when you read the report. Please make sure you contact your Genetics person and or a counselor to have those questions answered. It really important that someone qualified helps you understand.
In my thoughts and prayers daily,
Marcia

[ammebarb]

Thank you, both Denise and Marcia.

Barb A.

[Laurel]

Barb,

How did the MRI go? When will you get results? After your CT on Wednesday? Keeping you in my prayers!

[ammebarb]

Waiting on confirmation from my Dr. or her nurse, but I've read my reports on a patient portal (online) and it appears that everything is clear! I've been so stressed that I'm afraid to trust my reading of the thing, but I think it's pretty straightforward. Now, there is the doggoned genetic report to anticipate! Feeling very relieved in the moment, however, and thankful for the support and prayers you've offered. Thank you, thank you, thank you!

Barb A.

[KsGal]

Oh my goodness....YAY! YAY! Big hugs!!!! That is such wonderful news. :) More prayers for more wonderful news on the genetic report!

[ammebarb]

Well, the genetic test results came in the mail yesterday. They weren't as good as I'd hoped. Genetic changes on number 3 and number 8 chromosome indicate that I have a significant risk of metastasis (50% from 2 to 5 years). I have an appointment with an ocular melanoma oncologist at Univ. of Penn. on May 1, unless I can get in when I am back to Philly to see the surgeons who implanted my plaque. The plan is usually to be prescribed an adjuvant oral chemo, but I will need to just wait to see what is recommended. This news was difficult, but not totally unexpected.....all the online stats give that number and I am trying to think that if there is a 50% chance of recurrence, there is a 50% chance of non-recurrence too. I have hugely appreciated your prayers and support, and ask that you will continue to pray for me. You are all in my prayers every night.

Barb A.

[chrisy]

Glass half full already...hopefully your specialist will have some tricks to fill it to the brim.

Hang in there,
Chris

[BonnieR]

What Chrisy said! Glass half full! Keep the faith

[NEDenise]

Barb,
You've always struck me as a glass half full person. You're in my prayers too my friend!
And guess what! All the statistics people have quoted to me lately have been bad...very bad..,
BUT, then I come here, and realize those stats don't apply to US...we are "The HER2 Support Warrior Women"
With all the the prayers and healing energy floating around here...we're in very good hands!

Sending a big hug!
Denise

[ammebarb]

Just lost a rather long post, so I'm starting over....Hope it doesn't appear twice. Just back from seeing the retinal specialist who referred me to Wills. The good news is that the eye tumor has shrunk and is no longer covering the optic nerve. The retinal detachment that had been caused by the tumor has reattached since it has shrunk. It was a relief to know that the plaque seems to be working....It is a very effective treatment, but in a small percentage of cases, doesn't work. Then it's either done again or the eye is surgically removed. The Dr. was very grim about my genetic test results, and that brought me very low. Hubby and I talked on the way home and decided that nothing is worse than when I went for this appointment. We think he probably never sees choroidal melanoma in his practice and is used to giving folks much better prognoses than I got. Think he was also impressing on us that I had better plan to take adjuvant therapy....a given. I wouldn't have been so affected by his attitude regarding the testing if I weren't struggling for optimism and hope as it is. Trying to figure out if I need an antidepressant. Still taking my ativan and a sleeping pill. Any suggestions, warriors? You all know what it is to battle for a decent attitude. Prayers for all of you every night.
Barb A.

[BonnieR]

I am reminded of a saying from AA. " if you think you're an alcoholic then you probably are!" So, if you think you need an antidepressant, you probably do! We need all the help we can get in the down times. Maybe talk things over with a therapist familiar with our needs who could suggest medication compatible with what you already take
And do you have a safe place to vent? ( besides us?) a counselor or group? A burden shared becomes lighter.
Mostly, keep the faith

[NEDenise]

Barb,
I'm so sorry your news wasn't everything wed hoped for!
I know all about the struggle for a positive outlook through all of this. In my "expert" opinion...take the pill.
If after a week or two, you don't feel better...you can always stop.
But if you don't try, you'll never know.

For me...my Zoloft is my good friend...some of the other things we tried first worked "okay", but I feel like my old pre-BC self when my Zoloft levels are where they belong.

Just my humble opinion...
based on my own experience...
and virtually no medical expertise at all.
But, most important shared with love and concern for my friend, Barb. :)

Thinking of you, praying for you, and sending a giant hug across the state!
Denise

[Soccermom]

Dear Barb,
I too am so sorry for the way your Doc delivered this upsetting news. You are right in presuming that he doesn't see many cases and was trying to be "emphatic" in the only way he knew how.
As far as anti depressants go I believe they are heaven sent! One cant possibly be an effective fighter when already down. You deserve to feel the best you can under these circumstances and the right meds might just jump start your natural optimism. Please don't suffer needlessly , try them and like Denise said if they don't help after a while you can quit.
Sending many gentle understanding hugs your way tonightXOXO Marcia

[Laurel]

Barb,

I hate this scary @#&* you are enduring and wish I could ease it some how. Ok. You know my "glass half full" dictum. The positive take away here is that the plaque treatment is working! Yea! Your retina is healing now that it is no longer displaced by the tumor! Yea again!

Barb, you have heard doom & gloom before in your life regarding your health, specifically stats quoted 29 years ago with your breast cancer diagnosis, but here you are, my friend. What did you see and enjoy in those 29 years?

I know the stats are abysmally sucky, but 50/50 just means you are swinging from home plate against a decent pitcher with tolerably skilled fielders. Seems to me you should aim for the stands and take your chances.

As for the anti-depressant, I think you should embrace it as a short-term "get me through this" thing. At some point I think you will begin to believe you will be around for awhile and will not need it. I only have experience with Elavil which I was given for my ever chronic migraine. As I told you, I hated the dry mouth and somnolence so much I prefer the migraine! LOL. However, my one friend took Zoloft for a few months with wonderful results. She took herself off of it when she was on firmer footing.

As soon as I can get up your way you have a big hug (and Barb is a terrific hugger, guys!) coming!

[prolifejoan]

Dear Barb,

You are in my prayers. I will continue to keep taps on you
and pray for you. I have not been posting regularly, but I
want to remedy that in the future. This forum has given me
so much in hope, and faith and love, that I hope to give back,
even when I am dealing with those difficult moments. The
Venerable Fulton J. Sheen exhorted us to "never waste suffering".
I am not sure of exactly what that means, but
I think it means just placing all of my worries in God's lap
and trusting that He has my best interest at heart, and the
best interest of all of the people that I care about. And the
women on this forum, and their caregivers are definitely people
I care about greatly. I am learning to thank God for every day,
and not wishing that any part of it was different, somehow. I am
also proactively seeking to change what is right and good for me
to change, and that means seeking my own healing and cooperating
with all of the treatment and praying for myself and others. I am
finding that the more that I can "get over myself", the happier I
find myself to be.
I am so grateful to be part of this forum. May peace reign in your
heart and overcome all anxieties. God bless you. ~heart~