Calling all TNs

Oh Annie, dear, I will most definitely visit you when I visit my mother in Auckland, maybe next year.  I would love to meet you and give you a huge big hug, for all the laughs you have given me with your wonderful, cheerful personality which shines through your words.  

Regarding eyes, wow, I am so amazed to see how many of us have suffered with our eyes with this treatment.  Some of you might find this interesting ....... In 2009, when I was having weird symptoms in my body (which I now know was because I had breast cancer) and doctors did not know, one neurologist had done so many tests on me, I mean she covered everything, including things like checking Vitamins, heavy metals, arsenick, prior viruses.  I mean nothing was left out.  I treasure that blood test of 2009.  Then 6 months later I was diagnosed.  After all those tests had been done, they had found nothing, except that I had sleep apnea and that I should use the CPAP machine, which I have done off and on since.  However, one other interesting piece of information I have is that I was for once in my life "smart" enough to write down in my journal, that my eyesight was not good, before the chemo started.  So I had the perfect baseline noted for my health status, before I started chemo.  So for me, I don't blame the chemo for my eyesight problems, not entirely.  I did have those weird tears, and dead looking eyes during chemo, but those symptoms were temporary and they went away after the treatment finished.

I believe that my eyes do not sleep at night, or that it does not get oxygen.  It is so strange, but they say people who have sleep apnea wake up all night long unaware that they are waking up.  I am not tired like other sufferers, but it has definitely damaged my eyes.  I have experienced that eye doctors are good for NOTHING.  It is a waste to go to them.  Did you know that they were divided between, the "the front eye doctor" and the "back eye doctor".  The back eye doctor (Retina Specialist) can give you no answers as to the causes of the decline in your vision.  According to him, it has no connection with your eating, sleeping or anything else.  In my opinion, that is ridiculous, because, I believe every body part is connected.  The front eye doctor knows nothing either, I mean nothing.  I have gone to them, they shine their lights and make things even worse, in fact I started having terrible headaches from those lights.  I tell them to stop shining those lights in my eye.  I have no idea what they can do anyway.  I have macular pucker which is a sort of swelling of the epiretinal membrane.  One eye doctor told me he has seen that in patients who have sleep apnea.  I use the CPAP machine sometimes, but it is very uncomfortable.  I also developed very large circles around my eyes which are notable first thing in the morning when I wake up, so I feel my problems are related to lack of proper sleep.

When there is any danger to your retina (vision), the natural instinct of the retina is to form a very thin layer in front of the retina, so as to protect the vision.  In addition to sleep apnea, I feel that maybe during dose dense chemo (which is what I had), maybe due to the danger to my retina, the epiretinal membrane formed.  It was a one time event.  In order to take that membrane out, they can do surgery, but it can fall off naturally by itself as well.  I will never have surgery in my eyes, never.  I feel that there must be a natural way to get this thing healed by itself.  When I was in my 40's I could not see distance.  Now in my 50's I can see distance, but cannot see up close.  I thing this is all a natural rythm of getting old in additional to the sleep apnea problem I have.  Doctors told me that even children are having sleep apnea problems these days, so that is another newer disease in the market today and I have it.  What else is new, right?

Hi all,

Regarding bird watching - I used to enjoy it so much as a kid.  My elementary school principal took a small group of us to a bird sanctuary.  First time I got to use binoculars...it was fun! My dad was a big bird watcher.  We always had feeders and such around our house.  I really miss seeing and hearing so many of the eastern birds since moving to AZ.  But I have come to love watching the quail here.  They are so comical!  I am still trying to identify a lot of the others.

Wishing all of you well,  hugs,  lilyrose

sarajaneenvans - I am so sorry to hear of your friend - it is devastating.

Thank you everyone for confirming the whole nail issue.  I have to say I am not much of a girly girl and hardly ever painted my toenails or fingernails (I bite my fingernails out of nervous habit since I was very young) but after my husband commented on them they are now painted and I can wear open toe shoes.  It's funny because after our hair grows back and we don't look like a cancer patient anymore people don't realize all the little side effects we have to deal with after the fact. 

We just have to keep plugging on and being strong and have a positive attitude to get through it all.

Cheers to you all for everything you have to go through!

LPBoston, thanks for the kind words...I agree with your post re: toenails. my toe nails reminded me of my Aunt Ida's 85 year old toes....i tried to keep them covered up to keep from throwing up my self whenthey came  into view, but covering them only made them hurt more...they have all pretty much healed up, except for the big one left foot..it was the worst of the lot and is still so painful..I just keep dousing it with vicks vapo rub hoping eventually it gets the message..

natl12...I get my new glasses tomorrow and I am very excited to be out of this soft focus world I have been living in..I have nerve damage to one eye, which causes double vision and requires me to wear prisim glasses....I had to wait till everything had healed before getting my eyes examined for new prisim glasses..and boy let me tell you I cannot wait for tomorrow to come...

Thanks for the kind words re:my friend. I am beginning to wonder if in the end she made a choice to have no further treatment b/c her brain had been affected...she always said her brain was her most prized possession...not a question I feel comfortable asking the family ....she had been such a fighter up to that point..very positive, and determined..the news about her brain seemed to,have taken all she had..I never spoke to her after she got that news..she was gone in just a few days time.

Lovelyface....I found your post re: sleep apnea very interesting....when I had my first cataract surgery in March..the anestheologist asked if I had lung disease... I told him no! He said my oxygen level was low and needed to be addressed..no low enough to cancel my surgery, but low enough to be alarming and that I need to get with m y primary to get it checked out....long story short she suspected sleep apnea and sent me for a study, which has resulted in my having to go back next week for the crap test...I asked my radiology oncologist what he thought. He advised me to rent the machine and just see if I notice a difference in how I feel...it just seems that since I got the cancer diagnosis everything else is going to hell too..sje

Lovely..it was oxygen in my blood...they were giving me oxygen almost from the get-go while in pre-op...

When I was going through chemo my oxygen levels were low..my onc., ordered some kind of scan.. I don't recall what it was but it was negative for whatever he was looking for....so he determined the low levels were due to the chemo..which I pretty much suspected...

I was surprised when the anesthesiologist brought it up to me in pre-op.

Have you heard about the new treatment the FDA has approved for this condition??  Its some kind of device that is implanted in your chest( made me think of the port) anyway you click it on at night before hs, and off when you awaken in the morning..it does require a two hour surgery though. And then I expect it will have its on set of problems..

I will definitely let you know what I think...my radiology oncologist said I should notice a difference right away..so I hope he is right..

Google FDA approved new treatment for sleep apnea....

I hope so too LP!! I' ll be anxious to hear....i was supposed to get my new glasses today, but they couldn't pass inspection or some darn thing, so,it will be another week of lblurry living.... 

Ban and Luah, thanks so much for the feeback. I'm glad to know taking a week off isn't a big deal.  

stupidboob, that video was beautiful. Thanks for sharing

Lisa you are so welcome......................I like to share stuff I think might be an inspiration, pick me up or a feel good stuff..............:)  Thanks for letting me know you enjoyed it.

Glad you liked it Cocker and thanks for letting me know.   That is what I have always said, when people ask if I was going to have my breast replaced.  I am not my boob.  

Marsha can you believe your message just showed up at 12:05am...............glad you liked the video................I want your energy.....:)

Slowloris:  So sorry that you are going through this.  Sending prayers and hugs your way.

Slowloris - I'm so sorry for all that you're going through right now. It sounds like your MO is really on top of things and determined to get you into the best trial, which is wonderful. I'm sure this is a scary and stressful time for you. Stay strong and let us know what you decide. You will be in my prayers. 

Sending my best thoughts and hopes to you, slowloris.

Jenjen-- I have a very similar story with swollen neck gland(s).  I've been to several docotrs and had many ultra sounds.  So far I've had 4 biopsies, with none of them getting enough material to analyze.  I'm over due for my 6 month wait and see appointment with my endocrinologist at UCLA.  I do have an appointment there for early July.  Nobody but me seems to be excited about it.  Apparently glands that are so visible on U/S, come and go without logic and scare us to death.  Good luck dealing with you glands and keep us posted.  Jan