Now I am Sand

kathyDDD

Well, at least I was a 10 for a month. Today my red blood cell count was 7.6!!! How the mighty have fallen. Now instead of being Bo Derek, I'm not even the sand under her feet. At least that explains the tiredness this past week. I thought it was drowsiness caused by the pain meds. I will again have a blood transfusion tomorrow, receiving 2 units. Another 6 or so hours I can't get back. All other counts are great. I just can't pass red blood cells. The combination of pain meds is now working wonderfully. I have had no pain for the past week. This week was my first in my new classroom digs. The move to the first floor has been wonderful. The "walk" to and from my classroom is so easy, I can spend that extra 20 minutes to and from working at my desk being a real teacher again.

I spoke with my nurse practioner today about the "future." Duration of treatments, side effects, etc. Apparently, secondary bone mets is like a chronic disease, like diabetes or high blood pressure. It can certainly be controlled, as mine is, but "finishing treatment" may have no meaning, just as you can't stop diabetes or hbp treatments. They have patients that have been doing this for over 20 years and are still doing very very well. I may be able to have "rest periods" if levels continue to get really good and stable. I may be able to flex a schedule, like 3 weeks of treatment, 1 off or arrange treatments around vacation schedules, etc. There may also be a "remission." They obvioulsy can't commit to anything until we continue to see what my levels do. Believe it or not, I am fine with that because without the pain, I can function. Physically I am still limited in arm movement, ability to walk for any great lengths, and energy levels, but I can easily cope with all that. The lymphedema in my right arm will soon have a compression sleeve to help. I can even cope with the periodic transfusions, as long as they help. Being triple negative limits the treatment options, with chemo still working the best. The hardest part I am dealing with is the hair not coming back. The NP is going to speak to the dr. I am going to wait and hear what he says and then I am going to speak to him about Hair Club for Men or A & E as possible solutions. I figure I can talk to them and see what kind of cost I am looking at, but continual wig/hat wearing with no forseeable end in the future is making me crazy. I know that's a petty, vain thing to worry about... but it's the part I want control of. Have any of you looked into any organizations like this?

I'm sorry to ramble, but had a lot to digest today. I really am doing very well, and know compared to some, I am very lucky. The continual pain free days and first floor classroom have been godsends and I am back to teaching on all 4 burners. Thank you all for listening and I really look forward to hearing back from any of you about the hair thing.

Thanks,
Kathy

New Flower

Kathy
Thank you for your update. I am glad that you had conversation with nurse discussing directions of your treatment. I hope Chemo has been working and you will have long remission time in near future. I do not know anything about hair and wishing your own will grow back soon. Just be gentle with yourself, rest and relax as much as needed. Wishing you luck at your next blood transfusion.
Hugs,
New Flower

ms_independent

no hair news
I don't know anything about the hair replacement. I just wanted you to know how thrilled I am that you are pain-free and teaching full-tilt. Wishing you continued comfort and ability to "do your thing".

Take care,

El

Ritzy

ms_independent said:

no hair news
I don't know anything about the hair replacement. I just wanted you to know how thrilled I am that you are pain-free and teaching full-tilt. Wishing you continued comfort and ability to "do your thing".

Take care,

El

So happy to read that you
So happy to read that you are pain free. Sending you good luck and prayers!


Sue

aztec45

Glad to Hear
My Little Pooh Bear,

Glad to hear that you now pain free and doing better. You know, if your hair doesn't grow back, let me know and I will give you some of mine when it grows back a little longer.

P

Flakey_Flake

Hopefully you will get back
Hopefully you will get back up to a ten again. It must be frustrating to know that you will have to revolve your life around treatments, or treatments around your life. I just want the day to come when I do not have to remember Dr appointments, and when to take which pill.

Wish I could help with the hair thing. Don't have a clue, but would be interested in knowing. My hair is trying to grow back, but I ha som patches that are very thin, I may have to do a female version of the comb-over.

I love the fact that they gave you a classroom that works for you. You must be a very good teacher. Enjoy your freedom from pain.

Sharon

Moopy23

Kathy, I am so glad to hear
Kathy, I am so glad to hear that the right mix of pain meds was found and you are not hurting like you were. As far as hair, it is not a petty or vain thing to worry about. When I think of the possibility of future chemo (my 3A diagnosis was TN also), the first thing that comes to mind is hair loss again. So you keep asking--surely there must be some options.

Thank you also for sticking with us on the board and keeping in touch. You give me a lot of hope and knowledge about managing bone mets from TN. You are an inspiration, and I thank you for sharing your experience. You are in my prayers, Kathy.

Kat11

Moopy23 said:

Kathy, I am so glad to hear
Kathy, I am so glad to hear that the right mix of pain meds was found and you are not hurting like you were. As far as hair, it is not a petty or vain thing to worry about. When I think of the possibility of future chemo (my 3A diagnosis was TN also), the first thing that comes to mind is hair loss again. So you keep asking--surely there must be some options.

Thank you also for sticking with us on the board and keeping in touch. You give me a lot of hope and knowledge about managing bone mets from TN. You are an inspiration, and I thank you for sharing your experience. You are in my prayers, Kathy.

I am glad your pain is gone.
I am glad your pain is gone. Thats always a good thing. I can understand the hair thing. People tell me how unimportant hair is, that it grows back. Yes this would come from people who have a full head of hair. You do what ever it takes to feel good. Here for you always. Hugs and prayers.
Kathy

DebbyM

Moopy23 said:

Kathy, I am so glad to hear
Kathy, I am so glad to hear that the right mix of pain meds was found and you are not hurting like you were. As far as hair, it is not a petty or vain thing to worry about. When I think of the possibility of future chemo (my 3A diagnosis was TN also), the first thing that comes to mind is hair loss again. So you keep asking--surely there must be some options.

Thank you also for sticking with us on the board and keeping in touch. You give me a lot of hope and knowledge about managing bone mets from TN. You are an inspiration, and I thank you for sharing your experience. You are in my prayers, Kathy.

Glad your pain is so much
Glad your pain is so much better. I didn't have chemo, so, I didn't lose my hair.

Stay in touch and thanks for sharing with us.