INSOMNIACS place to talk in the wee hours

susan3

Boyd, I hope you are still lurking. Sometimes we aren't ready for advice, but we certainly don't mean to run anyone off. We all have dayswe don't want to hear stuff.....take a deep breath. My hubby took about 2years to adjust and be happy again, and allow me my sadness . It's tuff for everyone to process. My only child is 4 hours away, and I know she is happy about that cause she is not in the constant turmoil. I am sad, could use her help, but we all handle difficult situations in our own way. I occasionally see A counselor so I can purge. And he can't purge back cause he doesn't have cancer. That's a great help for me.

Hang in there sister

Chev, looks great

Jazzygirl

Boyd- some women do start with chemo. My sister did based on her type of cancer, but not all women will start with that. Many begin with surgery. And not all women will do chemo either. I didn't based on my pathology. Everyone here may have a different treatment plan, which is a good thing. The doctors try to give you what you need for your particular dx, and try not to over treat you.

debiann

Rose, so sorry you are facing so many challenges while trying to get hospice in place. This should be a time when you focus your energy on things important to you, not hassling with insurance companies.

I know you have a stong desire to not pass in your home. That is understandable, but please try to let go of that worry if it turns out that is the way it must be. Your family will feel the same loss no matter where it happens. If it's in your home, where they can surround you with love and support it may help them even more. 

I truly cherish the memory of my last week with my father. Although it was in the hospital, we stayed the entire week with him. The hospital allowed us to stay in a storage room that had two beds and access to a bathroom. We took shifts sitting with him, he was never alone. We fed him, listened to his engaging stories, said our goodbyes. Morphine is wonderful, he had no pain.  If the same experience would have happened in our home, with the help of a nurse, it would have been ok.

Sometimes I feel like it should have happened at home. I pass the hospital everyday on my way to work and I say "hello" to him, but I feel like we left him at a strange place. Like we went on a trip and didn't bring him home with us.

Anyway, I'm not trying to debate inpatient hospice vs. hospice in the home. I truly hope you get what you want. I just wanted to say let go of your worries and wish you peace.

Boyd748

Thanks all! I was just wondering. My husband doesn't care that my breasts are different sizes, he was just answering a question. He is concerned but holds it in, he doesn't know what exactly to do because he can't fix it. Now just to wait and see. Haven't been scheduled for biopsy yet when the radiologist called yesterday she told me she would have the scheduling depart contact me. A few hours later my doctors office called because they had heard from the radiologist herself and they were taking care of getting the necessary insurance stuff taken care of. Hoping to hear today and get appointment for next week.

Thanks everyone

M0mmyof3

Boys- I was diagnosed in late March '13, I started chemo mid-April '13. I had hair down to my waist at the time. I lost all my hair, but it started to re-grow around my 4th treatment. Its now down just a little past my shoulders, enough to wear in a ponytail. Tell your hubby to get with it and be more supportive, you need that right now.

debiann

Wow boyd, I want to see pictures of your hair.

If neo-adjunctive chemo (means before surgery) is recommended, then yes it could begin quickly after diagnosis. 

Adjunctive chemo happens after surgery. Some people need no chemo.

There is a "cold caps" thread dedicated to discussing the benefits of using ice to prevent hair loss during treatnent. If this is a concern for you, check it out.

Boyd748

Thanks guys,

I don't mind losing my hair, I just want photos first. I don't have any pictures of it right now, I avoid cameras. I will get my husband to take a pictures of it later tonight.

Thanks

Freygea

Hugs Boyd and welcome! This is all new and never feel silly about asking any question here. If one of us cannot answer here, of all places, then we are all on the wrong forums.

The part of not knowing and waiting to get tests set up seems to be the longest. Just keep bugging your docs on the phone to get a biopsy set up and go from there. Once that is done, call them every 4 days until they get the results. It can take up to two weeks for results so I wanted to let you know that now.

You are going to get ahead of yourself..it is bound to happen so do not sweat it. If you are really having a time of it I would advise setting up an appt with your doc right away and tell him/her you want something to help you sleep and to keep you calm while you get through this peroid of tests and waiting. I needed some trazedome to help me sleep because I would just be soo wired and anxious waiting for something to happen. Be firm and tell the doc you do not need the extra stress and sleep would be the best way to help reduce stress. I ended up only needing a sleeping pill every so often but it really helped. I was also given xanax and have used those in my first three weeks of my diagnosis. I know it is hard to believe but it gets easier as you go on.

Your road may be short (no cancer) and you may find out there is nothing to worry about. Your road may end up being a bit longer and you may find out it is cancer. If it is..we are all here and really really really..if it is..there is life after being dx with cancer.

I promise you.

Spookiesmom

Boyd, so glad you decided to stay!! I keep my hair very short, always have. When MO said I would loose my hair, I laughed and said I'd get Spookie cut down, and have a wig made so we'd match. He didn't get it. That's her in my avatar.

No the dog park is still flooded and mushy. Spookie was black up to her ears last night. Kris had to roll on something so he was black too.

Rose, sounds like your main problem is WHO pays the bulk of the insurance. The Catholic Church. Separation of church and state and all that entails. Not meaning to offend with that statement. It's probably why going to your state insurance office won't do any good.

Spookiesmom

Can you see the mallards swimming at the dog park

Spookiesmom

can you see the mallard ducks swimming at the dog park?

Loveroflife

Do I need to pack raining boots

Spookiesmom

probably not

Loveroflife

I am so grateful for all of you ladies for your wisdom and compassion.

Rose, I am soory I can only offer to listen and try to understand your challenges/trials. You have created an awareness for me too regarding hospice coverage by insurance. I know you are thinking about your family. This is a very stressful time for everyone. I am sad that you have to spend so much of your energy to take care 'business'. I totally understand not wanting to pass at home because I feel the same way. However, I thank Debiann for her wisdom. She helps me see things differently. I hope you find peace my friend.

Wren44

Boyd, Totally off subject. How do you avoid sitting on your hair? Do you always wear it up? I have baby hair and have never had it past my shoulders. Got there and stopped growing.

luvmygoats

I had a toad cooling its little toenails in the goats water this morning. I feel like a hermit with all the curtains closed. Expecting we'll get a burn ban shortly not that in this house we're burning anything outside. The electric grid set all time high use yesterday - topped the one just from last week. If we can just get thru the weekend it will normalize a bit. Doesn't say much for the temp but I think maybe the humidity will be down a bit.

RosiePosie - I wish I had an answer for the hospice question. It's the private insurance eating your lunch on that. Medicare I don't think has any restrictions (could be wrong) so long as hospice has proper accreditations. And they will have or Medicare won't pay. I am not familiar with the "adult foster home" term. That may be what we call family home or board & care homes. I had no patients in a group home setting, mine were all own family homes or NH patients though my co. for sure had lots of pts in these place - just not in my assignment. I hope your PCP has some other suggestions. Can't find who accredits most there. TX Department of Aging and Disability Services (DADS acronym) here.

https://oregonhospice.org/

http://www.hospiceanalytics.com/hospices/oregon/po...

These may be a re-hash of stuff you've already seen.

Boyd748

Thanks Freygea,

When the radiologist called me yesterday she told me she would have my results back in two days, apparently she is having them rushed top priority! I don't know if I should feel honored or terrified.

Also yes I do sit on my hair, I have also caught it in car doors, electric windows etc. I keep it in a low ponytail and than wrap it up in a bun and put a clip on it. The biggest clip I have been able to find isn't big enough though so it falls down a lot. I usually grow it out and donate between 12" - 15" it does take a few years though. I've donated 3 times so far. If I do have to have chemo I will cut it in multiple braids so I can donate as much as possible, also it's way to thick to cut through it in a single pony tale. I am careful with it as best we can be. No hairspray, color, or styling items, I won't even blow dry it it, I want it to be the healthiest I can for those who need it. I've always donated to Looks of Love but have no problem donating to someone in need. My husband also grows his to donate but it stops growing so it's not as long but he has ringlets. I actually have a braid of his in a bag ready to go and his hair is long right now.

Loveroflife

Wren- you crack me up!

Boyd, I lost my post earlier. Good thing it was short. I can't do long post like Goats, Ms. CHEVY, or Ms. Sassy. Marlana's post is almost at the same level. Anyway, it is still annoying when I lose a post. Ok, what was I saying...oh yeah, it is wonderful that you are growing your hair to donate it. My older daughter just donated hers a few weeks ago. Her hair was down to her butt! She wanted to grow it a little longer but was having a hard time fitting it in swim cap.

luvmygoats

Loverly - can't imagine putting 1/2 that much hair in a swim cap.

luvmygoats

Something is wrong with this picture. It's 99 here and 73 in Nashville.

Boyd748

So great that your daughter donated my oldest donated years ago but she is so hard on her hair now it isn't worth donating when it gets long. She has Brunette hair with natural blonde/red highlights.

I have been in a swimming pool a few times with my hair braided back. I make sure it's good and wet and has some conditioner in it before swimming so it doesn't just soak up the comical, and I use shampoo made to wash it out of your hair after swimming.

Boyd748

Hey what does it mean when someone says they are in NED? I can only guess maybe Never Ending Drama lol not sure so thought I'd ask😃

sas-schatzi

No Evidence of Disease

Boyd, I've been lurking. That means to watch. I figured I'd give you time to settle in. I tried to be supportive before and sent you flying away. You comfy here?

Boyd748

Yes all is good! I just got off the phone with the breast center. My ultrasound guided biopsy is scheduled for Thursday the 13th at 2pm. The breast center is great so far, they gave me the direct phone number for the nurse that will be handling my care throughout my whole biopsy procedure, recovery, results and anything after. Now I have a scheduled time to have it done I can just enjoy my time before knowing that I will know more soon. . Thanks everyone it's going to be s long week but going to use this time to organize my house and swim with the family.

Spookiesmom

Yay!!!!!!enjoy the pool!!!!!!!

Boyd748

Thanks

Loveroflife

We have another organizer. Good therapy because it is something we have control over...well almost. Can't really control messy family members

Loveroflife

Frey, I am glad to hear you had a good night sleep and are feeling better.

Goats, I don't know how she was able to fit her long hair in her swimming cap. She looked like Marge Simpson in her cap.

Boyd, are you overwhelmed with love yet?

Chevyboy

Boyd.... my friend Rosie just had the ultra-sound guided biopsy....! Her results were benign.... that's what we always hope for.... ! So yes....just go enjoy yourself....

This is "my" Rosie.... not the same as "our" Rosie.... but both from Viet Nam.... She is an excellent chef... She is our "other daughter from another Mother".....

And Janie.......

tangandchris

Chevy can I come over....your yard looks divine and I could use a hug