Dis Breast Cancer Survivors Part IV - GAGWTA

[luvmarypoppins]

Diana - your pictures are so beautiful

Linda - I am sure you are busy with graduation planning

Tazdev - hope your dad got a good report

Peg - I dont know how you do it down there. In 6 days dh and I went through 30 bottles of water and 4 powerades

Well ds and his gf had a good Disney trip and good weather. Dh and I had iffy weather at times and were like 2 snails compared to what they did. The older we get the less we do I think.

Before our trip I pulled a muscle in my R shoulder but that was better. Our trip was quick and it seemed we didnt really see alot due to the weather one day for sure and just timing.Our Swan room was nice. The rain was bad the lst day and we were soaked o the Boardwalk after dinner with no boat running. Dh left his cell phone in the town car so we had to wait for the driver to come back with it. Just things that eat up time. We didnt even get to see Wishes. But did see the Star Wars fireworks and Illuminations twice each.

The Yacht Club needs their room rehabbed asap. Our view was of some trees with the disney busses on the other side and parking lot etc. Not very romantic for an anniv. at all but we did get to swim twice in Storm Along Bay. On our last night I was bending over in the wheelchair to put up the foot rests and I pulled a muscle in my L rib I think. It still hurts but I am holding off going to the dr. Always something. I am so weary of all of this. I did do alot of walking and dh pushed me when I got tired. Dh said I walked too much.

The food was good for the most part. We liked Trattoria Al Forno on the Boardwalk and the breakfast buffet at the Garden Grove at The Swan. I will do a dining report in the near future.

Ds2 had an interview at the place where dh works, so we shall see. Ds1 is not happy with his job. That is always his story it seems sigh and ds3 is busy working. They mentioned wanting him to be the preceptor for the nursing students from the univ on the floor.?? One day we will go celebrate my b day as a family but no one has time right now.

Dh is leaving again next week for the west coast I think.

GAGWTA. Hope everyone is doing well.

 

[robinb]

@luvmarypoppins it sounds like your trip was a bit "mixed". That's a bummer about the room in the YC. They should be perfect considering how much they charge for them. The YC is one of the 3 Disney resorts where I have not yet stayed with AoA and Fort Wilderness being the other two. I've become such a cheapskate that I don't think I'll ever stay there, LOL! We had breakfast at the Garden Grove and it was very good. I thought it was the best character breakfast on property. We also ate at Fresh Mediterranean Market the last time we stayed at the Swolphin and it was really great. My DH had SPG status and it was included for free .

I have some great news! It was 3 years ago this month that they found breast cancer on a routine mammogram. I had my routine follow-up mammogram this week and it was perfect! Thanks so much to all the love and support in this thread when I was going through my testing and treatment.

 

[The Mystery Machine]

@luvmarypoppins , sounds like you wanted to experience Disney your way.

Congrats to you robinb.

Me? I am a bit in the anger stage here. I have a bit of lymphedema. I am a bit pissed that the "team doctors" did not tell me that radiation destroys your lymphatic system. I told them I have issues with swelling, cysts, PCOS, upfront. Never once did they mention that.

I have just started seeing a lymphedema PT. (Found totally on my own, with no help from my breast cancer center.)

It is not bad, but it isn't good. My groin and left leg do not want to empty on their own. My arm is only slightly graced with swelling. Right now I am doing manual lymph massage to "drain".

Next week, I will be ordering a lymph wrap for the arm. Also my sister has compression pumps for leg and arm and will start using those.

Bad news, good news sort of thing.

 

[robinb]

@luvmarypoppins

Me? I am a bit in the anger stage here. I have a bit of lymphedema. I am a bit pissed that the "team doctors" did not tell me that radiation destroys your lymphatic system. I told them I have issues with swelling, cysts, PCOS, upfront. Never once did they mention that.

I don't think I was told that either. IIRC you had some of your lymph nodes removed. Perhaps the radiation was more in that lymphatic area under your arm? In any case, it sounds like a PITB

 

[The Mystery Machine]

I don't think I was told that either. IIRC you had some of your lymph nodes removed. Perhaps the radiation was more in that lymphatic area under your arm? In any case, it sounds like a PITB

Just had the 1 sentinel lymph node removed. Prior PTs gave me the song and dance routine of you chances of getting lymphedema are 1%.

I told them I am probably IN that 1%. Of course at the time, they just blew it off. Now here I sit.

 

[Dancind]

MM, no one told me either. In fact, my surgeon did not tell me that I lost so many lymph nodes. I found out by reading the pathology report. Talk about mad. You are doing the right thing though, finding a massage therapist that knows how to help. I found one that had a lot of experience with lymphedema and she was a godsend. The therapist at the hospital had no clue, and it was so expensive. Paid out of pocket too, so worth it.

Just back from visiting DD in Portland. Ate amazing food again. It was a good visit, DD is working on a certification as a Front End Developer. Web page stuff. It's a perfect career for her and I'm so glad she's doing it. Takes a load off!

 

[luvmarypoppins]

I have a question for a friend

She is having a biopsy on a suspicious area and they want to leave a titanium marker inside her. Has anyone experienced this? Pros and Cons? Thanks so much for any info.

Mystery Machine - sorry you are dealing with the lymphedema

I thought I had a month off from drs/tests. but I forgot that the endo wants me to have the repeat sonogram of the one swollen lymph node

I did a dining report for anyone who wants to read it. Its kind of bland and boring, lol

We are going to a family wedding out of state on Friday. My aunt told me they are sitting dh and I with the minister, oh joy! I asked about the ds and she said they are sitting with the cousins. I have a feeling I will be glad when this is over for sure. All the ds will be heading for the bar I am sure and I dont like sitting with people I dont know. My aunt said I can come and get up and visit her etc.

This is a cover your plate area and my aunt already told me it is $150 a person, omg!!

GAGWTA. Hope everyone is doing well.

 

[smiley_face2]

Hi all!
Robinb.... congrats!! every year that passes is something to celebrate!! In 4 months I hit my 5 year cancerversary from the end of my treatment, 6 years from my diagnosis. My last scan was clear again. Completely boggles my mind that it has been that long! It is even more inconcievable that it is 5 and a half years since our dear son was taken from us.
Dear daughter ended up back in hospital again, the one who was closest to her brother, the one with 3 little children. It was a full month of hell for us again, just like so many years ago. I think it was basically just untreated depression for her, then some post partum depression. She is doing very well again now, and we are recovering from all the extreme childcare we had to do.
Our youngest officially split with her fiance, the one who travelled with us on a big road trip in 2013 down the coast of california to disneyland. that hit us hard, another big loss, and it was a lot like grieving our son, we considered him our son in law already.
We got a lot done in our yard, but not everything we wanted to of course!! but it will do for now! Right now I am on a saving mission for a trip down south in October. the only time of year I haven't been down there and one that I have always wanted to do! I'm glad now we didn't go into debt making the trip in january I wanted to!
TMM.... I feel bad for you with the lymphadema, I still have it, some days not very much but some days, especially if I am not feeling well, it is really bad. I need to go back to PT again I think. Still better than the alternative right?!
Diana, I think of you every time we open a bottle of Fetzer Valley Oaks!! Lol! that's another reason I want to go through that area in fall....
GAGWTA and now that life has settled down a bit I hope to get back in here a bit more!

 

[leebee]

For all who've been wondering and worrying- Minkydog just posted on the Community Board! GAGWTA!!

 

[Dancind]

Thank you, Leebee, sounds like she has been having quite a time of it. Hope she stops by eventually.

Janet, glad you are getting back to CA. We decided to go in September, going to fly DD down to join us. Already paid the dues on the timeshare in Napa for the year, and didn't want it to go to waste! DD has decided she likes wine now so it should be fun. DD tends to depression/anxiety too, so I push her to keep taking Gaia Turmeric and to exercise. The turmeric is kind of a miracle supplement for all kinds of things, we take it too!

LMP, I had a marker with my first biopsy. Sorry to take so long to respond to your question. It was removed of course, when I had a mastectomy. In the between time, I had horrible pain in my hip/groin area, that went away immediately after surgery. I questioned if it had to do with the marker, but the surgeon insisted not. Was told the doctor that did the biopsy may have hit a nerve (possible, it was bad). Will never know for sure.

 

[Pea-n-Me]

O wow I was apparently so busy with HS graduation and college orientation X2 I completely missed all these posts.

I think they should just tell everyone they might get lymphedema after surgery and/or radiation, then if you don't get it, it's a pleasant surprise. It is a side effect of radiation, especially in the presence of lymph node removal. I had it but the good news is that after the initial treatment (PT and sleeve to fly) it rarely flares up now. I knew exactly how many nodes I had out (8) and how many were positive (2) - my surgeon informed me and then my oncologist went over it with me, and the implications (additional chemo, etc.). I think it sucks, but we just have to keep in perspective that we are very fortunate today to live in this day and age that there are effective treatments for us, even if they have some unpleasant side effects. Some of us may not be here otherwise. That's how I look at it. It does suck to go through it, though. Just know that hopefully it will get better with time.

 

[smiley_face2]

Thank you, Leebee, sounds like she has been having quite a time of it. Hope she stops by eventually.

Janet, glad you are getting back to CA. We decided to go in September, going to fly DD down to join us. Already paid the dues on the timeshare in Napa for the year, and didn't want it to go to waste! DD has decided she likes wine now so it should be fun. DD tends to depression/anxiety too, so I push her to keep taking Gaia Turmeric and to exercise. The turmeric is kind of a miracle supplement for all kinds of things, we take it too!

LMP, I had a marker with my first biopsy. Sorry to take so long to respond to your question. It was removed of course, when I had a mastectomy. In the between time, I had horrible pain in my hip/groin area, that went away immediately after surgery. I questioned if it had to do with the marker, but the surgeon insisted not. Was told the doctor that did the biopsy may have hit a nerve (possible, it was bad). Will never know for sure.

Well Diana, if there is ever a year you want to rent out your time share because you can't make it there you know who to send a message to! Will you be going to Disneyland as well? I am pretty sure we won't be going there this time, we want to be able to take a couple of the grand kids in 2017 when Star Wars Land opens up! Now don't laugh.... there are a series of Jeep and Dodge commercials on the tv all the time, featuring California locations. at the end of the jeep one, they show the line up of jeeps, all white like ours, and we want to make stops on this trip, and make our own jeep commercial!! LOL!! we tried to do a trip one time, stopping at featured restaurants on the guy ferririe (spelling?) show diners driveins and dives. it's kind of like looking for hidden mickeys at Disneyland! lol!
I will be looking into the tumeric, I do know it's a known cancer fighter, so I should be taking it already! and I will tell daughter about it, she can see if she can take it with what she is taking now.
Pea n me...lot's of words of wisdom there!

 

[Dancind]

Oh yes, you must get the turmeric! I am a believer! I took it for several years before I tried the Gaia brand. Wow, what a difference. I have a degenerated hip that has caused me pain for years, and this one supplement has stopped the pain. It's amazing.

It also is supposed to be anti carcinogenic, good for the brain, insulin control, and help stomach problems. I would take it for the pain relief alone, but it really does help with mood.

We will fly into Oakland, so no Disneyland this trip. Caught the Southwest sale or we might have driven.

 

[The Mystery Machine]

Hi fellow Disers. I am in quite a pickle with swelling. In a nutshell, my lymphatic system is working poorly. On top of everything I have to go on a low salt diet and lower my sugar.

I am wearing a compression garment on the my left arm to reduce that arm a bit. I am seeing Lymph PT and a PCP so far. OB is Monday.

So there is my update.

I am so happy that Minky posted and is doing well.

 

[smiley_face2]

Hi fellow Disers. I am in quite a pickle with swelling. In a nutshell, my lymphatic system is working poorly. On top of everything I have to go on a low salt diet and lower my sugar.

I am wearing a compression garment on the my left arm to reduce that arm a bit. I am seeing Lymph PT and a PCP so far. OB is Monday.

So there is my update.

I am so happy that Minky posted and is doing well.

oh man sorry you are having so much trouble with it! I have all but cut out sugar since my diagnosis almost 6 years ago, just because it causes and inflamatory response in your body which is linked to cancer, and it feeds the cancer cells. At least that's my understanding. Also I discovered, sugar either comes from genetically modified beets, or from sugar cane, which they now spray with roundup before harvest because it dries up the leaves to make harvest easier. I only buy organic sugar now for the small amount of baking I still do. I will still have treats once in a while, cake on birthdays, an icecream cone at Disneyland! but I avoid it like the plague all the rest of the time! I read package labels very carefully, because when companies were forced to start reducing fat and doing away with trans fats all together, they started pumping sugar into foods instead. Anyway.... sorry if that's just all too much! I figure every little healthy thing helps, I take pro biotics and vitamin D every day too, and weigh about 25 pounds less than I did when I was diagnosed as well. Now I am going to start taking tumeric! lol!

 

[smiley_face2]

Oh yes, you must get the turmeric! I am a believer! I took it for several years before I tried the Gaia brand. Wow, what a difference. I have a degenerated hip that has caused me pain for years, and this one supplement has stopped the pain. It's amazing.

It also is supposed to be anti carcinogenic, good for the brain, insulin control, and help stomach problems. I would take it for the pain relief alone, but it really does help with mood.

We will fly into Oakland, so no Disneyland this trip. Caught the Southwest sale or we might have driven.

will be going on monday to the health store to get tumeric for both daughter and myself!! just had an mri done for my lower spine and hips, so that's great it can help with that pain too!

 

[Dancind]

The Gaia brand is a good buy on Amazon. I did try other brands, they just didn't work like this one!

If you are going near Paso Robles on your trip, try to visit Tablas Creek Winery. One of our favorites. We are club members, wondering if I can make you an appointment for a free tasting!

 

[Dancind]

Speaking of nutrition. No one is asking, right? LOL I got on my soapbox a couple of times on our cruise, that was very bad. The ship had pastured eggs, it was quite obvious. People would comment on them (the yolks were very dark an orange compared to US eggs) and I would start talking about how poor our food supply is in the US. My poor husband. It really is a crime, though, what we are feeding our kids. The food we ate in Europe, especially the produce, was amazing! Have you ever tasted an actually sweet bell pepper? I never had, until I had a Nicoise salad in France!

I did so good avoiding sugar for several years. But I will confess to making ice cream/gelato with half the amount of either coconut or organic sugar called for, especially in the summer. I get the best quality grass fed milk and cream I can get my hands on, and it is so good. I can make a pint last a good while too! Finished making some honey lavender ice cream yesterday, next planning some hazelnut for DH. When our mint is flourishing, will make some fresh mint.

Also use a bit of maple syrup here and there, for curries etc. Never, ever buy candy at the store, or baked goods. They all have the bad sugar in them, plus the long list of unknown chemical ingredients.

 

[luvmarypoppins]

I am glad Minky check in on the other board

TMM - sorry you are dealing with the lymphadema

smiley - sorry you have so much on your plate to deal with. The trip to California sounds great to look forward too

Well my friend went for a second opinion and now they think they will just watch it and re evaluate in 6 months. I dont know if I personally would be happy with that. I already am worried just about one questionable lymph node that I am having checked out again at the three month mark.

The wedding we went to was fun. It was a horrible drive getting there. It was great weather for an outdoor wedding. The reception music was loud and of course the ds had a good time. I enjoyed spending time talking to my aunt who I rarely get to see.

Our central air is broke and the guy cant come till friday they are that booked. 2 years ago he told us the system would probably only last another 2 years since it is so old, so I guess this might be goodbye to the old one. So happy its not all that hot here, uncomfortable at times but not unbearable.

I will have to start getting all my teaching stuff together as I got all my material yesterday. God Bless all the real teachers out there.

GAGWTA. Thinking of you all.

 

[luvmarypoppins]

This thread is quiet but so hopefully everyone is doing well

smiley - hope you are enjoying Canada Day

Happy early 4th of July to all and hope everyone has a good week end. I have grilling, reading and teacher prep in the plans. Low key stuff for sure.

We got our ac fixed and it was only 2 parts so that was great. Ds3 took pity on my non airconditioned state and took me to see Finding Dory and we went out for lunch one day last week on one of his days off. We bumped into our pastor and another guy at lunch.

My future medical stuff is neck sonogram, mammo and lots of dental stuff I am sure. ugh.

GAGWTA. Have a great week end ladies.