Dis Breast Cancer Survivors Part IV - GAGWTA

[kimblebee]

Hi everyone..I'm taking you at your word that everyone waiting for tests is invited. I hope this is a place for vents because here goes.. (sorry if some of this is repetition)

Back in the summer last year I decided (with my neurologist) to start a new MS treatment because the one I was on at the time was deemed a failure.

My new treatment was going to be a five day IV treatment and it was going to kill my immune system and hopefully have a healthy one regenerate. Because of this, I had to have several (tons) of tests and vaccinations done to make sure I wouldn't be susceptible to any germs while my immune system was regenerating.

One of the tests I had to have was an HPV test (this is where it might be a second reselling for some of you..apologies). I got the results back that I did have HPV and I was sent for my first cervical/uterine biopsy to see if anything had come of the hpv.

I did the procedure early January and by the end of January I got the dreaded phone call (FOUR DAYS before my MS treatment was supposed to start) that early cervical cancer had been found. A week after that phone call I had my pre op with the surgeon and two weeks after that I had surgery to see if it had spread.

It has been three weeks since the surgery and I can't focus on anything else but waiting for the phone to ring. If the call is a good call, I will 'only' have to have a hysterectomy. If the call is bad, it will be chemo/radiation and then a hysterectomy. Also, my MS treatment has to be fit in there too. I have to wait two months either before or after surgery to do the treatment due to the possible side effects.

I HATE not knowing what's in my future. Either way, this year is going to suck. I feel helpless because all these major decisions are out of my hands. I just feel like I'm along for the worst ride ever.

I just want the other shoe to drop so I know what happens next. Even if it's the worst possible news, I just want to know.

Anyway, that's my story. Sorry for the long post.

 

[The Mystery Machine]

I am so sorry kimblebee. You can post as long as you want.

I am also waiting on results from my uterine biposy, although it has been a week and I figure no news is good news for me.

After putting pressure on the docs, they finally confirmed I AM in menopause by doing blood work twice. So of course that means the bleeding I was having was post menopausal. My NEW oncologist said I had to see the OB who gave me a surprise biopsy in her office.

I also have osteopena, since i was able to get a bone density scan since I was confirmed as post menopausal.

I know it is tough. HURRY UP and WAIT! We will be here hanging around. Feel free to ask and vent all you want. (((HUGS)))

ETA, OB just called and I am fine cancer wise. She said I had "weeping" and "atrophy" which is normal. Gross.

 

[smiley_face2]

Aw Kimblebee, you are right, waiting to know is the worst!! dealing with what ever it is one way or another is easier, at least you can make a plan then. I will keep you in my thoughts for the best news possible!
TMM... that is great news! could you ever have imagined yourself one day saying it was great that it is just "weeping and atrophy"?! the new normal, at least we are all still here and can vent to each other!
GAGWTA

 

[The Mystery Machine]

Aw Kimblebee, you are right, waiting to know is the worst!! dealing with what ever it is one way or another is easier, at least you can make a plan then. I will keep you in my thoughts for the best news possible!
TMM... that is great news! could you ever have imagined yourself one day saying it was great that it is just "weeping and atrophy"?! the new normal, at least we are all still here and can vent to each other!
GAGWTA

It was not easy to PUSH them though.

I refused to take the Tamoxifen until they proved I was not in menopause. So my words for women, do not settle. Make sure if they put you on a drug, you know the risks and prognosis.

I would have been on the WRONG meds if I followed the lead of my other oncologist. Now I am on the other drug, which is important to me.

 

[luvmarypoppins]

kimblebee - I hope you hear good news. Waiting is agony but hang around here, its a good diversion

TMM - Glad you got good news, well as good as it could be. I know you will take that news over the other.

Today I had my endo appt. and it did not go as planned. My bp was good, I did gain some weight but its the winter and I dont go out much, afraid to break something and fall. I am getting a medication adjustment because my one thyroid number is not good she said.

Worst news was that she said the troublesome lymph node I have had for a year still has not gone away on the sonogram, so on Monday I will be getting a biopsy. She mentioned in this order - cancer, lymphoma or a reactive lymph node. I will take door number 3 Monty Hall ( dating myself with the old Lets Make a Deal show lol). So I am joining the lets wait and see for the biopsy results.

Of course I always freak out so I need a diversion so this week end I think a movie or some retail shopping therapy is on the agenda. I did ask if it was cancer again and she said she would refer me to another surgeon. I guess she knows how dh and I feel about Dr. Surgeon who almost killed me.

So we biopsy and we wait, oh what fun!!

GAGWTA. Hope everyone has a great week end. I need to watch that giraffe.

 

[The Mystery Machine]

Luvmarypoppins, sending you some (HUGS)....And what are you talking about OLD with Let's Make Deal, it is still on sans Monty Hall, lol.

I will agree with some retail therapy. Currently I am collecting Pioneer Woman dishes, "Vintage Floral".

In fact after my oncology appt today I popped into WalMart and bought a coffee cup and a bowl. (All is fine, she is sending to meet with her Lymphedema PT to see if we can work on some of my swelling.)

I also OCDly clean my kitchen pantry and make sure everything is in its place.

Movies? Disney Beauty and the Beast is out of course.

GAGWTA And yes watch the giraffe. They are saying she is very close and to keep an eye on it or you will miss it.

 

[Pea-n-Me]

Hi everyone..I'm taking you at your word that everyone waiting for tests is invited. I hope this is a place for vents because here goes.. (sorry if some of this is repetition)

Back in the summer last year I decided (with my neurologist) to start a new MS treatment because the one I was on at the time was deemed a failure.

My new treatment was going to be a five day IV treatment and it was going to kill my immune system and hopefully have a healthy one regenerate. Because of this, I had to have several (tons) of tests and vaccinations done to make sure I wouldn't be susceptible to any germs while my immune system was regenerating.

One of the tests I had to have was an HPV test (this is where it might be a second reselling for some of you..apologies). I got the results back that I did have HPV and I was sent for my first cervical/uterine biopsy to see if anything had come of the hpv.

I did the procedure early January and by the end of January I got the dreaded phone call (FOUR DAYS before my MS treatment was supposed to start) that early cervical cancer had been found. A week after that phone call I had my pre op with the surgeon and two weeks after that I had surgery to see if it had spread.

It has been three weeks since the surgery and I can't focus on anything else but waiting for the phone to ring. If the call is a good call, I will 'only' have to have a hysterectomy. If the call is bad, it will be chemo/radiation and then a hysterectomy. Also, my MS treatment has to be fit in there too. I have to wait two months either before or after surgery to do the treatment due to the possible side effects.

I HATE not knowing what's in my future. Either way, this year is going to suck. I feel helpless because all these major decisions are out of my hands. I just feel like I'm along for the worst ride ever.

I just want the other shoe to drop so I know what happens next. Even if it's the worst possible news, I just want to know.

Anyway, that's my story. Sorry for the long post.

I'm sorry I missed this, kimblebee. I hope things are going ok for you. Do you have a plan of care in place yet?

 

[Pea-n-Me]

lmp, i had a node like that in my neck too. My cousin had lymphoma so we decided to take it out and biopsy it. It wasn't anything bad, just a plain ol' lymph node. I hope the same for you. The nodes in the neck filter everything from the head, so they can be pretty active.

TMM, I'm glad you have a new oncologist and she is getting things done! How is it going with your lymphedema? Any progress?

I had a concussion that was a little scary, but doing better now. My mother also had to have a pacemaker put in. So we were busy for a while. Got in a Disney trip when we went down to FL for the NCAA games, it was fun - but we missed DS being with us at the resort and in the parks, etc. Fortunately we got to have dinner with him a couple of times, and we had him for a few hours at Flower and Garden. We were all sick from the plane, and the dog got kennel cough from the kennel, too, so we're finally coming out of the fog. Now we have another storm coming in this weekend, it's never ending!

 

[kimblebee]

I'm sorry I missed this, kimblebee. I hope things are going ok for you. Do you have a plan of care in place yet?

No..I'm still waiting and it's making me crazy. I'm trying really hard to not think about it but my follow up is on two weeks so it's getting harder and harder.

 

[The Mystery Machine]

Pea it still remains to be seen if this is in fact lymphedema. I have doctors that say it is and some that say it is not. I am thrilled to be seen by a doctor that cares. Such a relief.

Right now I am dieting and exercising my way to "health". I have to lose 25lbs PDQ and not dilly dally IYKWIM. It sucks but I am down 8lbs.

I have other components to deal with like my newly diagnosed metabolic disorder. I am hoping the weight loss helps my numbers, my liver, and helps with swelling. I am going to a "lipid clinic" & she is going to break it all down for me with a fancy lipid blood panel next week.

 

[smiley_face2]

kimblebee - I hope you hear good news. Waiting is agony but hang around here, its a good diversion

TMM - Glad you got good news, well as good as it could be. I know you will take that news over the other.

Today I had my endo appt. and it did not go as planned. My bp was good, I did gain some weight but its the winter and I dont go out much, afraid to break something and fall. I am getting a medication adjustment because my one thyroid number is not good she said.

Worst news was that she said the troublesome lymph node I have had for a year still has not gone away on the sonogram, so on Monday I will be getting a biopsy. She mentioned in this order - cancer, lymphoma or a reactive lymph node. I will take door number 3 Monty Hall ( dating myself with the old Lets Make a Deal show lol). So I am joining the lets wait and see for the biopsy results.

Of course I always freak out so I need a diversion so this week end I think a movie or some retail shopping therapy is on the agenda. I did ask if it was cancer again and she said she would refer me to another surgeon. I guess she knows how dh and I feel about Dr. Surgeon who almost killed me.

So we biopsy and we wait, oh what fun!!

GAGWTA. Hope everyone has a great week end. I need to watch that giraffe.

saw there was new posts, got an email for a change! popped in to read and don't have time for a big post, but wanted to stop and say LMP sending everything I can in the way of prayer and positive thoughts for you!! I pick door number 3 as well! Hang in there!!!

 

[luvmarypoppins]

Hi Ladies

Well I survived the biopsy/fna, so not fun.

This was done by a new dr./endo they have there. She specializes in that. She was very nice and kind. It was a little different from the others I have had. I had to lay down. When the surgeon did them before I got to sit up in the chair. She said she would do 4 samples. It ended up that i had 5 samples (needles) because she said the needle kept getting clogged. She asked me if she could do the 5th one while I was laying down, what did she expect me to say, lol. She said she wanted to give it her best shot. She said I was a real trooper I only flinched once because it was really hurting when she was probing around in there.

She is sending it away to a lab who only does head and neck and thyroid things and she said she has more faith and trust in them then the univ. hosp. lab.

She said I should get the results on friday and my endo will call me. She said if the results are inconclusive then they could sent me to a specialized cyto lab or the endo may want to just watch it? We shall see.

She said based on what was happening it could be a lipoma but she does not want to say that because she could give me a false hope and then I could get results that it is actually cancer again, so we just have to wait.

Came home and took 2 tylenol and my neck is still sore and hurts if I move a certain way.

I am praying alot. Saw Beauty and the Beast. I thought it was good. Went out to dinner over the week end.

GAGWTA

 

[Feralpeg]

LMP and Kimblebee, Prayers coming your way!

Sorry I haven't been around. We are in the new house! It's been crazy and exhausting, but we are finally in. Still settling in, but loving it.

Here are a few pictures of the new house.

No curtains up yet in the great room/kitchen. Our dog Luna loves her new space!



Here is my room/bath.

 

[Pea-n-Me]

LMP and Kimblebee, Prayers coming your way!

Sorry I haven't been around. We are in the new house! It's been crazy and exhausting, but we are finally in. Still settling in, but loving it.

Here are a few pictures of the new house.

No curtains up yet in the great room/kitchen. Our dog Luna loves her new space!

View attachment 229173 View attachment 229174 View attachment 229173 View attachment 229174

Here is my room/bath.

Very beautiful! I'm glad you're settled, finally.

 

[smiley_face2]

LMP still praying for you! I am hoping to go see B and B with my youngest daughter, she grew up at at the time it first came out, and being brunette, really loved Belle more than all the blonde princesses! lol!
Peg, that is stunning!!! love the marble counter in the kitchen!

 

[Dancind]

LMP, hoping for the best. Sorry you are having to wait. The doctor sounds lovely, the two doctors that did my biopsies were like night and day. Seems like there should be a standard.

Kimblebee, sorry to hear you are waiting too. It's the pits.

Maryann, please check in and keep us posted when you can. Was just going to say two things in the "couldn't hurt" category, a ketogenic diet and Liposomal Vitamin C. Google them along with breast cancer and chemo. I did some Vit C treatments between biopsy and surgery last time, and got very different lab reports. The first one showed very aggressive tumor, after surgery showed low risk. I don't know if the Vit C had anything to do with it, but I'm a believer. I still take it several times a week.

Peg, that is one gorgeous kitchen. White kitchens are so in now, and so pretty and classy. We closed on our 70s ranch in early March, spent two weeks cleaning, painting, carpeting, and some updating. And at the last minute found a renter. Separated the basement space, needs fixing up, but we have a place to stay when we are there. Been back since Monday and still exhausted. I even painted. We now have 1 1/2 to 2 years to move, wish it were sooner.

Janet, I hope your loan is approved! Certainly know what that's like, went through it with two mortgage companies. It was hard because DH is self employed but calling the new place an investment property helped because they will add the potential rent to your income. If you sell, where will you move to?

DH has a bad case of sciatic nerve pain, and has to get a suspicious lump removed from his ear. Guess it's his turn, at least I am ok for now!

 

[smiley_face2]

LMP, hoping for the best. Sorry you are having to wait. The doctor sounds lovely, the two doctors that did my biopsies were like night and day. Seems like there should be a standard.

Kimblebee, sorry to hear you are waiting too. It's the pits.

Maryann, please check in and keep us posted when you can. Was just going to say two things in the "couldn't hurt" category, a ketogenic diet and Liposomal Vitamin C. Google them along with breast cancer and chemo. I did some Vit C treatments between biopsy and surgery last time, and got very different lab reports. The first one showed very aggressive tumor, after surgery showed low risk. I don't know if the Vit C had anything to do with it, but I'm a believer. I still take it several times a week.

Peg, that is one gorgeous kitchen. White kitchens are so in now, and so pretty and classy. We closed on our 70s ranch in early March, spent two weeks cleaning, painting, carpeting, and some updating. And at the last minute found a renter. Separated the basement space, needs fixing up, but we have a place to stay when we are there. Been back since Monday and still exhausted. I even painted. We now have 1 1/2 to 2 years to move, wish it were sooner.

Janet, I hope your loan is approved! Certainly know what that's like, went through it with two mortgage companies. It was hard because DH is self employed but calling the new place an investment property helped because they will add the potential rent to your income. If you sell, where will you move to?

DH has a bad case of sciatic nerve pain, and has to get a suspicious lump removed from his ear. Guess it's his turn, at least I am ok for now!

Finally! looked into our account and there is all this money in it, because the payouts will be made tomorrow morning. We had a couple of things come up that reduced what will be left over to do anything around here, but at least we are in a stable situation budget wise now. That was one lonnnnnnng painful process! For now we are staying put. we will see what the future brings if we did sell we would probably just downsize to a condo or such, can't honestly see moving away from both daughters and half of our grand kids!
I can't believe you have got so much accomplished!! and a year and a half is going to fly by!! lol!
our daughter in law finds out tomorrow if the house she and our son owned here is sold for sure or not. it's been a long painful process for her too.

 

[luvmarypoppins]

Janet - thinking of you. I am sure it is so bittersweet about the house. Hope all the financial stuff works out for you too

Diana - sounds like you are moving ahead to the future

Peg - your kitchen is so gorgeous!!

Well the endo never call me today, sigh. Its going to be another long week end. I will watch the giraffe and go shopping and have to do a little project for church and go there sun too. Dh and I will go out to dinner.

Tues. we are going to get our taxes done. I dont want to call the dr. I have enough on my plate emotionally. She can call me. I just wish the biopsy dr. would not have said I would know by today. sigh.

I did make some adrs for our trip. So far I have dinners at Kona, Cape May and Hollywood Brown Derby (dh asked for these), Chefs de France (finally got one for me) and Be Our Guest but its during the fireworks so we will see them another night and then Tusker House. I only booked that to see if we could get a Rivers of Life fastpass. If we cant I might dump that one. Also dont know where to stay but so far I am looking at one day at the Beach Club 2 days at the Yacht Club and then 3 days at the Swan. That is what you have to do when dh ant commit to the last minute due to his projects etc.

GAGWTA

 

[luvmarypoppins]

Well I called the dr. today since I didn't hear anything

She finally called me back and unfortunately I got Door1 - the cancer is back so dh and I are going to talk to her tomm. and see what her treatment plan is that she has in mind. I know I mentioned to her that I didnt want the surgeon who almost killed me to operate on me, so I hope that the one who saved my life will operate if that is what she has in mind. I am sure it will be surgery since I have the rare aggressive variant of it.

I have a feeling we wont be going n that disney trip in May. Glad I only made the adrs so far, lol. I also think teaching will be out this summer which I love, such is life,

Say a prayer for me. Thanks

GAGWTA P.S. - Cancer sucks!

 

[Feralpeg]

LMP, you are and will continue to be in my prayers.