Dis Breast Cancer Survivors Part II -GAGWTA!

[imabrat]

Ladies, I have a question.

How long did it take for you to get your menstrual cycle back after chemo? I've been having cramps alll day so severe I'm taking a pain killer for it and I'm just wondering if I could be getting my period back.

 

[Pea-n-Me]

Great news, Laura.

imabrat, 3 months.

GAGWTA

 

[snappy]

Thanks for posting the wonderful news, Laura!! I am so glad you were approved. It was meant to be.

Can you get started on it pronto?

Jackskellingtonsgirl, did your mom only get the ultrasound scheduled but no further info from the surgeon?

My husband was reading the thread earlier and got confused reading a quote from jackskellingtonsgirl about her AKV purchase. He thought it was me posting that I had just bought an AKV membership. I think it shook him up a bit.

As if I would haul off and buy something like that without consulting him. HA!

He sounded optimistic about being able to make the vacation after all, I am so glad. I was feeling overwhelmed about being responsible all by my lonesome for 2 12 years olds, a 17 year old and an 18 year old.

I am just a big ninny.

I'll just be glad when we are actually on our way.

 

[MerryPoppins]

I was approved for Humira!!!!

What wonderful news! I'm so happy.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

imabrat- I'm sorry you are in so much pain. Sounds like Aunt Flo is coming though. I was on a drug during chemo to shut down my ovaries and stayed on it for 3 yrs so I can't really answer your question. Hopefully things will return to normal for you soon.

Laurie- Too funny about your hubby thinking you bought AKV and read about it for the first time here! Believe me, I'd be stressing about driving the kids alone too, ugh! I hope you get in lots of RnR (Rest n Relaxation with a little Rock n Rollercoaster throw in!)

Thanks sistas! I'm so excited! I was doing a little reading and Humira is fully human protien, no mouse involved...which is probably why I eventually failed Remicade. My body didn't want no mouse except Mickey! My GI doc wants me to start ASAP...which in medical speak means, who the hell knows, lol!

I have more hurdles I'm jumping. Had to call ins. co. I have to get it through a specialty pharmacy. They need to get the rx from my dr. who didn't know yet, I told him about the approval. Pharmacy has to do an ins. test run to make sure they have all the needed info. Then I pick up the meds, somewhere...maybe in a week? I am supposed to go to the hospital to have my first (4) injections, but I am going to try to talk them into just letting me do it myself. I just want to get on with it!!! It will hurt, I don't care! I am happy!!!

 

[snappy]

Mickey the only for you!! Love ya mean it!!

After waiting this long for approval it is a crime that they are pussyfooting around with administering it.

Have you given shots to yourself before? I gave DH allergy shots back in the day this was allowed (we are talking the 70's), They had me practice on a orange with water to get used to the syringe. The needle for that was very thin though so it was easy.

Nowadays there are worries about reactions at least with allergy shots.

Do you expect many side effects other than making you get well?

Laurie

 

[laurabelle]

Laurie- No, I've never given myself injections before. I am supposed to be getting the pen injections, not syringes (unless the ins. co... oh, they wouldn't DARE!) Anyway, the Humira website has all the instructions on it, including a video. The injection itself is no biggie to me...me, the human pin cushion! I believe all the potential risks/side effects are the same as Remicade, so nothing new there. Yes, getting well is the side effect I'm hoping for!

 

[jackskellingtonsgirl]

Jackskellingtonsgirl, did your mom only get the ultrasound scheduled but no further info from the surgeon?

My husband was reading the thread earlier and got confused reading a quote from jackskellingtonsgirl about her AKV purchase. He thought it was me posting that I had just bought an AKV membership. I think it shook him up a bit.

As if I would haul off and buy something like that without consulting him. HA!

He sounded optimistic about being able to make the vacation after all, I am so glad. I was feeling overwhelmed about being responsible all by my lonesome for 2 12 years olds, a 17 year old and an 18 year old.

I am just a big ninny.

I'll just be glad when we are actually on our way.

I guess that will teach your DH to read the thread! I hope he is able to make the trip with you. Then you can go on the DVC tour together!
Yep, they told my mom they will schedule an ultrasound for SOMETIME after the 26th and then go from there. I think maybe they want to see what the OB/GYN finds out on Thursday, just in case those benign results earlier weren't really so benign. She told me today that she thinks it is silly for DS & me to fly up next weekend because we'll be there such a short time. Well, when I booked those tickets I fully expected her to be in the middle of chemo, not still sitting around waiting to have her surgery scheduled! I thought she would be happy that we were coming to see her. But maybe she figures I will just nag her about getting her claim forms filled out so she would prefer for me to stay home. Anyway, we have the tickets so we are going.

Laurie- No, I've never given myself injections before. I am supposed to be getting the pen injections, not syringes (unless the ins. co... oh, they wouldn't DARE!) Anyway, the Humira website has all the instructions on it, including a video. The injection itself is no biggie to me...me, the human pin cushion! I believe all the potential risks/side effects are the same as Remicade, so nothing new there. Yes, getting well is the side effect I'm hoping for!

Good luck! Hopefully you will be able to master the injections yourself!

 

[snappy]

What a wonderful graduation party we had. Just family plus DD17's BF. . .I guess he will be considered family after we take him with us to WDW.

It was a rare for this time in south Louisiana coolish and very low humidity day. I had all the food ready by 8:30, we cruised off to my dear sister's which she had all decorated in Tulane colors, etc. (She actually has a graduate degree in social work from Tulane).

We had a smalish turnout so we sat outside and visited and enjoyed the breeze. It was wonderful. I don't think I have ever been that relaxed during a function for one of my kids. Helps not having it on the same night as graduation.

My dear friend from New Orleans and her son were there too and she had a great news. She put in an offer and was accepted for a house in a historic part of New Orleans on the West Bank called Algiers Point. It is a renovated house done by an expert in historic renovations. It is considered new construction on the inside and a historic renovation on the outside.

It has some hurdles, there will be multiple inspections, and she'll have to secure SBA financing. She is some excited though. In order to keep the same homeowners coverage at a nearly affordable rate she had on her flooded house she had to finalize this by August (3 years post-Katrina).
We are keeping our fingers crossed that all works out. Not many homes are selling in New Orleans. Things are not getting much better in that department, getting loan approval and insurance these days is almost impossible.

My DD gave me the biggest hug you can imagine when we returned home from the party. She really appreciated what we did, it was truly a no-conflict lovely day. Great way for this graduation thing to come to a close.

I just wanted you to know how wonderful I feel. And I am going to Disney in less than 4 days.

Life is good.

 

[jackskellingtonsgirl]

Snappy, reading your post made me happy. I am so glad you had a wonderful afternoon! I hope your trip is the most magical yet!

 

[laurabelle]

~~~***GAGWTA sistas***~~~

jackskellingtonsgirl- Maybe your mom is concerned you won't be able to fly there when she is finally going through treatment...you never know. Hopefully this will be the last piece of info they need to move forward.

Laurie- I'm so happy for you...yes life is GREAT!!! The party sounded perfect! Especially the hug at the end! It was so nice of your sister to host it, I'm sure that added to your sense of calm.

When you mentioned your friends house...I was thinking of you last night. My youngest dd's favorite show is Extreme Makeover Home Edition. Last night was the final night of their 50 state tour and they were in NOLA making over a house and a church. I guess it must have been a two hour show, because we missed the first hour. They have episodes online too, usually a couple of days after the show airs.

Hubby took us girls out to an early dinner last night. We didn't get to celebrate my mother's day the way we wanted, plus my oldest is feeling better after missing the week of school with her bacterial infection. She got all her homework done, including studying for two high school assessments that she must pass to graduate. After we got home from dinner, hubby and I were on the back porch swing in the rain talking about my favorite subject (no, not me, lol) WDW! I was wondering how much it would be to pick the kids up from school on their last 1/2 day and fly down that afternoon instead of early the next morning...so off I go. Flight price and car rental are the same. Call CRO and Pop was available, still no AP rate, but believe me, it was a minimal disc. We were going to do the deluxe dining plan but I had him quote me the regular DDP and it was not that much more than I was already paying. So now we leave on the 10th. If I keep it up Laurie, maybe I'll bump into you there!

 

[jackskellingtonsgirl]

Laura - Yay for more time at WDW! It sounds like you had a nice evening!
Going to visit my mom for Memorial Day is FAR less disruptive than it will be if I have to take off in the middle of June or July. I am off May 23 - June 8, so going up to help her would have been easy. I have to bring DS home on Monday because he's not out of school until June 4, but I have mapped out a plan for coverage if I need to go back up there. But things have dragged on for so long I will probably have to be back at work before she has surgery. I do have 4 vacation days left that I can use, but the logistics of going later get very, very complicated. DH can't take any extra time off, and the friends who offered to help with DS are leaving on a cruise to Alaska on June 8.
DH is getting worried that the longer things go, the more likely it is that I won't be able to do the whole 16 nights at WDW in August. I know that sounds selfish and horrible, but we are all just very frustrated with the snail's pace of things AND my mother's complacent attitude. I know she can't make the doctors move any faster, but she could be getting her claims filed and getting her affairs in order while she waits. Instead, she prefers to put her head in the sand and ignore what needs to be done, then she gets mad at me if I ask if she has made any progress. I have never been good at boundaries, but I think I may need to set some before I am completely consumed by beating my head against the wall. I can't MAKE her make the right choices. I just need to step back and let her do whatever, then I will bite my tongue really hard and force myself not to say "I told you so!" when things turn out like I knew they would.

 

[jackskellingtonsgirl]

A little update. Breast ultrasound on May 27, surgical consult June 2. The problem is whether or not they can do her surgery within a couple days of the consult. I guess we'll just have to WAIT and see!

 

[judithen]

Laurabelle, thank you for the (whoo, whoo) "Welcome"! And it's good to know that someone else gets those muscle spasms.

Snappy, congratulations on your DD's graduation. How good of your sister to host the party!

Our SWA prices out of Chicago have been ridiculous, ranging from $145 for an early flight, usually stopover, to $200 for a non-stop mid-day...each way. DH and I had gotten used to the $59 DING fares and are in shock. We'll be at WDW from 6/21 to 7/6 and then again 10/26 to 11/4...Family Reunions both times. I finally applied for a SWA Visa card and like the points racking up for a Rapid Rewards Award. Oh well...

Disney or Bust.

 

[DeeCeeSW]

GAGWTA Ladies!

I hope that everyone is doing well. Congratulations to those with graduates! Please forgive me, I have not had time to read through all of the posts I have missed.

I have tunnel vision right now, as I am sure you all understand. I met with my local oncologist today (the second opinion/oncologist is through Sloan Kettering, if I even decide to go see her). My breast surgeon recommended the man I met today and she tells me that 3 of her patients have already worked with him and have had positive experiences. He did his fellowship at MSKCC.

I was pleased with the visit and I liked the man very much. He was VERY thorough. We spent almost 2 hours with him as he went over the path report from my mastectomy surgery and he explained all the reasons why chemo is needed. The office was clean and pleasant (and huge!). Treatments are given inside the office, not at the hospital. I like this. I was able to see the treatment room. There are about 15 chairs, a tv, trays of food, coffee and other goodies. I met two women while there, and they seemed happy with the care they are receiving. They both showed me their ports (I will have one inserted next week).

So here's the deal. What we originally thought to be Stage I cancer was upgraded to Stage II after 2 out of 12 lymph nodes showed cancer. The tumor itself was Grade 3! He says this is a little strange considering that the tumor was estrogen positive, progesterone positive and my Her2nu was negative. He says despite this that the tumor was still favorable. Notice the word WAS as he stated that the bilateral mastectomy surgery rid of my cancer and I am considered cancer-free. Of course, chemo is needed due to the positive nodes, and I knew I would be receiving chemo regardless of my node status.

The doc told me that I will be receiving a "dose-dense regimen." He explained how the "standard combo" is C/A with Taxol. When I told him about my concerns about Adriamycin due to heart disease in my family, he was very understanding and had NO problem with my suggestion for a Cytoxan and Taxol regimen only. He explained that there is less data on this combo, but that the results were the same and that he wouldn't be surprised if this combo became the "standard" in the future.

So the plan is for 4-6 treatments (however he said to count on 6), every 2 weeks. The good news is, if all goes well, I will likely done in 3 months instead of 4 (the C/A with Taxol combo would have required 8 treatments). Even if things do not go as planned, I will likely be done with chemo by the end of August. Fast forward 4-6 weeks after that and I will hopefully have my new ****ies.

Then I'm going to Disney World...LOL!

I WAS shocked when he told me how soon I will probably see hair loss...most probably 17-19 days after the FIRST treatment. Good thing I have already bought some hats. I also have a cute wig on its way from Paula Young (online company).

I have been weepy most of the day. I knew this day was coming and so I have "allowed" myself to cry today and maybe even tomorrow, but then I MUST MOVE ON! Any tips on how to do that, LOL?

x.o
Dawn

 

[jackskellingtonsgirl]

Dawn, I hope the chemo goes better than expected and that you are ready for your new bosoms by Labor Day!!

Sometimes I don't know quite what to say to you girls who are going through surgeries and treatments because I haven't been there. If I say something odd or insensitive please forgive me and know that I am in awe of your grace, strength and wisdom as you get through these battles! GAGWTA!

 

[Sha]

Snappy, your pm box is full!!! LOL

Hoping that everyone got the pixie dust I sent via prayers this weekend from WDW! Just catching up. Prayers for all of you that need them... never can have enough can we? for those who dont feel they got enough pixie dust, I will be back there this weekend... so will do again

 

[judithen]

DeeCee, intense time. You take as much time as you need to do your grieving. And then, yes, you do need to move on. But first you need to find the strength inside you and that doesn't happen in a day. It sounds like you've got a great medical team. And that you're very comfortable in your surroundings...which is VERY good.

I found journaling helped to find the strength needed. As did plain old daydreaming...which I still do a lot of. I can't say I used any meditation techniques but I focussed on God...a lot. And that's what got me through the most. Giving myself permission to think about me and treating myself like I'd treat someone else in the same boat helped...bunches.

Having raised 2 kids of my own, 1 foster, and numerous exchange students, besides being the main caretaker for 3 of our 4 parents and being self-employed, I wasn't too used to thinking of myself first. And I'm sure you all can relate. Women tend to focus outwardly on the needs of others and feel...guilty?...when focussing on themselves.

So if there was ever a time for you to take care of yourself, this is it. Your doctors will appreciate it, too, as you respond...better...to your treatments. But you sound like you all ready know this. Please take my words as just further encouragement.

I also had Stage 2, Grade 3 cancer. No lymph node involvement but skin involvement and 4.5 cm tumor size. I was triple negative (estrogen negative, progesterone negative and HER2 negative) though.

There was a history of heart disease in my family but I had one round of 4 cycles, 3 weeks apart, of AC and then a second round of 4 cycles, 3 weeks apart, of Taxotere. The MUGA scan that was done on my heart prior to chemo showed there shouldn't be a problem. And thankfully, my cardiac stress tests since are still good. All my chemo was neo-adjuvent (prior to surgery) so it's been 4 years this month since they were begun.

Disney World is the best medicine for all ills. I went twice during chemo and found no problem getting around. It's so handicapped friendly and scooters are a blessing. Granted, I wasn't flying all over because I was pretty tired. But I still hit as many rides as I could. It was hoot seeing the faces of the CMs when this bald, old lady drove up to the Single Rider line of MS or TOT. I'm sure they wondered if they would be carrying me off...or worse, cleaning up after me For the record, neither happened. That's the wonders of modern medicine.

BTW baldness at WDW is a badge of honor. You can't believe how supportive everyone was...from CMs to ordinary people. And there are a lot of us Disneyphiles who share this boat. I'd meet other breast cancer survivors everywhere I went. When I first learned of my cancer, it was very shocking. And I wasn't too sure I liked being known as a Breast Cancer SURVIVOR. Now, after meeting so many strong women, hey, I boast of my survivorship. We're tough ladies and deserve to have it known.

 

[MerryPoppins]

Dawn, you sound great. There's nothing wrong with a good cry now and then. It's kind of a pressure release, like the valve on a pressure cooker. Allow yourself to grieve a little, just don't let it eat you up. Get it out when you need to and then move on. It's time to prepare for battle, so you need to get your game face on.

Be good to yourself. Don't push yourself when you're feeling tired or ill. Be patient and realize that these are temporary things. This too shall passs.

Remember that you are beautiful. It's not your chest or your hair that makes you a beautiful person. It's the you inside that we know and love that is beautiful. The rest is just window dressing. We love you in spite of whatever is missing...and so will your friends. Before long you'll have breasts and hair again and I think you'll see that you're a much stronger person from walking this path. (I'm maybe not the one to talk. I didn't do chemo, so I never lost my hair, etc. but I did lose one breast.) I'm not saying I'm glad I had cancer, but I know it made me grow in ways I wouldn't have otherwise. So in it's way, good can come from everything.

The way I see it, you focus on the next step in the path. As my DH put it "Let's just look at the next thing we have to do to get you well. Once we've gotten there, we'll look at the next thing." Just keep facing towards the light at the end of the tunnel and take it one day or even one moment at a time. When I'm faced with something like this, I just look at the baby steps I need to take and keep seeing myself heading towards my goal. Never dwelling on how far away the goal seems, but always how much progress I've made. I'm sure it feels good to tick off each chemo treatment. I've heard lots of GAGWTA ladies say "only 2 more" etc.

Start looking forward to your trip. When you're feeling down a little Disney planning can't hurt. You can't feel too bad if you're planning a Disney trip, right?

 

[dbprimeaux]

Well, I got my treatment plan today. I will start 6 weeks of radiation next week. I am using MD Anderson Cancer Center in Houston, TX. We decided to rent an appartment due to travel time and the cost of gas right now....But, boy is this going to hurt our DVC travel over the next year!! But, ya gotta do what's best...

Best to everyone!