Starting Chemo April 2009

Betsy, you are right that it is a horrible decision. For those of us who are BRCA+ there isn't any choice. As a single woman, I feel like "damaged goods". But what is one supposed to do when you know if you don't do it, your odds for survival are poor, and your family tells you they want you live. No one should ever have to make such a choice and I hope Lena doesn't have to but when the decision is clearly life and death, it's amazing how you change your mind. Yes, my life has changed - but without life there is no quality.

Ok ladies- I need some advice/help!  You may remember I had that cranky onc who made those condescending remarks to me and how much I struggled with it?  Well, back in Oct, when I saw the nurse practitioner, she INSISTED that I switch over to another onc in the practice, that this situation was not good for me, etc etc.  So I made my next appt with a female onc who I had spoken to on the phone once  (back during chemo when she was on call) and I never forgot the respectful, peer-oriented disussion we had. 

So anyway, TOMORROW is my onc appt. with her.   And the question is - what do I say (if anything) regarding the fact that I am a new patient (to her) but have been through my tx already? I.e. - do I say anything about why I switched or ignore the subject entirely?

My thought was to say something very brief like "As you can see from my chart, I've been in the practice for over 2 years now. I had some problems with Dr. W's approach but wanted to wait until active tx was over to see someone else. At my last appt, Betsy (the nurse prac) insisted that it was time to do so.  I remember a phone call I once had with you and I appreciated your approach so much, I wanted to see you."  (Dr. W's personality is legendary in the practice, so I am sure she will know what I mean.)

It will be VERY hard for me not to want to sell myself..."I'm a really good patient, I won't be any trouble, am very motivated and compliant" etc etc etc but I don't think that is a good idea.

Any advice? Thanks in advance.

I will say this...I'm not nervous about this check up AT ALL (other than meeting her for the first time). I got through the mammogram which was scary because they could SEE inside of me. This appt will just be them poking around and asking how I feel. And I feel great, so I'm sure it will go fine.

Oh Helen...I wasn't talking about not having a BMX...if that is the best or only option. We all made and continue to make the best decisions we can given our changing health, dx and families. There is no right or wrong way to go. The point I was trying to get across...is that at some point...when no options are good or don't provide a good enough outcome that quality of life should be an important consideration. I know my post has more to do with me and my thoughts then about Lena. As Judy would say,  I'm struggling with my Mum who has just recently been released from rehab with palliative care and hospice. All I know...that unless there is hope attached to further and further medical procedures...at some point we all may need to face this decision. Hopefully...a very, very long time from now. Got to go...my sister just called my Mom is heading back to the hospital.

Betsy - sorry that you are having such a hard time with your Mum. I too hope that the decision is a very very long time from now. Please keep us posted and know that we are thinking about you.

Amy - how did the appointment go today? Lena - hope you are doing ok. Helen - hope you are making that list of things to do, starting this summer!

I am finding myself a bit low at the moment. I keep on having sort of flashbacks to this time 2 years ago when I had just started chemo. It comes to my mind, (not sure why) and then it actually makes me feel nauseous or I suddenly get a shiver and want to cry. It is so bizarre. I have always been someone who feels associations very strongly, so it could just be the time of year, spring in the air, certain smells etc. I suppose it is just the same old thing - just when you think you may be making progress and moving forward, it comes out of nowhere. I know that I am making progress and that this will always be a part of my life, but sometimes I wish it wasn't.

I am sure it will pass, but thank you for listening.

Sending hugs to ALL of you and hope you have a great day, Judy x

Amy, thanks so much for that information, I will definitely look it up. How did your appointment go?

Hope everyone is having a good day, Judy xxx

Judy, you are not alone - I find myself thinking back to 2 years ago as well - must be the time of year, we were all in the midst of our chemo and various struggles back then.  I found the unpleasant memories came back with plugging in a new air freshener.  It must have been one that I was using during chemo time, and I popped it in last weekend and almost threw up at the remembered associations with the smell.  I also find myself thinking, 2 years ago this week, I shaved my head.  2 years ago this week, I got my port, etc.  It is a form of PTSD that we as survivors and fighters are going through, definitely.  That air freshener was thrown out and I made a note of the "flavor" so I don't buy it again.  I think we all go through highs and lows, its part of our new normal.  Especially if we are still having pain (as I am - still in the damn nipple) and discomfort; lingering side effects or issues that just don't go away - people forget about how much we've been through - both the terror and the pain, the unpleasantness combined with the strong determination to beat this.  It takes a toll.  I for one, do not sleep well unless I take something.  OTC sleep remedies do not work.  Ambien, 1/2 tablet, is the only thing that shuts my brain down.  I hear that the tamoxifen helps contribute to insomnia, but I don't know what it is, just that I cannot go to sleep without it.

Have my onc visit tomorrow - should be uneventful, hopefully, but I have a feeling they'll schedule me for scans and mammogram, especially in light of the recent lump scare.  I'm not worried about it (much), except that I have new insurance and it isn't nearly as comprehensive as my old policy, so more is paid out of my pocket.  Amy, I am glad you finally went to a new onc - doesn't it make a difference when your doctor isn't a jerk?  I wish I had my current onc from the beginning, but glad I have her now.

Betsy, sending you hugs about your mom.

Ladies, have a good evening - hope everyone is finally getting some springtime warming up or melting.  We're near sweltering here in Florida, but that goes with the territory of having the air conditioning on since February. 

Talk to you soon.

Michele

Judy & Michele -

In an earlier post, I referenced my friend who has PTSD and did the EMDR therapy. She also has a lot of trouble sleeping AND trouble coping/moving on (understandably). Her doctor said that sleep is COMPLETELY connected with our ability to cope emotionally and handle things. She said you should keep a journal on your sleep and your emotional health (good days/bad days) and you will see a definite connection between the two.

I think this gives a lot of answers and takes any guilt/pressure off you about not doing well or handling things the way we think we should.  When you are sleep-deprived, EVERYTHING is more difficult and small things can quickly become overwhelming.

I hate meds too and would resist taking sleep meds. BUT it is worth talking to your doctor about and trying. Quality of life is too important to suffer unnecessarily.  ALSO - getting enough sleep is CRITICAL to losing weight - so Judy, if you get the sleep thing under control, you may see more success in that area, too. (Wouldn't that be nice?)

Enjoy the day - it is so beautiful here.

Michele - I came across something recently (I can't remember what, haha) that instantly brought me back to chemo days. The memory came through so strongly, it was amazing. A psychologist told me once long ago that the smell and memory centers in the brain are very close together, so a smell will have a very powerful memory connection.  That makes sense to me. Glad you threw the offending air freshener away!

Betsy, so sorry to hear about your mom. Pleasd let us know how she is doing. I forgot it's April. The two years have been a challenge. The days went slowly but the years have gone quickly. I have to admit this is the only place where I feel I can expressly real feelings. Today I went for blood work in preparation for Zometa next week every day there are reminders. Tomorrow I will make the announcement of my retirement. It is one of my regular meetings with my principals and vice principals so I thought I would announced it there. After that a message will go out to the entire system In my heart I would like to stay another year. But my head is telling me that I need to change my priorities. And start looking after myself

Hi everyone. Weather here is miserable. Lots of rain and wind and it's cool. Typical April but a bit cooler than normal. So I made my announcement and then a message went out to everyone from the Director (about 10,000 employees) so it's done. Lots of people shocked and I'm getting very nice emails - gee, I wish people would be so nice every day. Anyway, I hope I'm doing the right thing.



Lena, how are you doing? Chelev, good to hear from you

Just a quick hello to everyone - returned from my trip to Puerto Rico with my daughter.  We had a great time together and I am enjoying my last day of vacation before work begins again tomorrow.  Hope everyone is doing well - sun is out here..finally!

Just passing through quickly today - hope everyone is doing well!

Take care and hugs to you all, Judy x

Hi Everyone - I am so glad that I found this site again,

Don't know if you remember me. It's been over a year since I posted anything. Need some support and advise from the girls that made going through chemo much more tolerable. It's been two years and alot has happened. I've been separated from my husband for a year and we are going ahead with the divorce. I initiated the divorce- the last straw was on my one year cancer dx. anniversary. I showed him the date on the calender and made the statement, that it was my one year anniversary, his reply was - That he didn't" give a "f**k" get over it and move on!!". I felt like I had been slapped in the face and kicked in the stomache at that moment. On the outside we were the perfect couple - people couldn't believe that we were separating. His explaination was that I couldn't handle the stress of the cancer treatments and went over the edge. Of course my closest friends and family know differently and have encouraged me to end the marrige for my own health and sanity. - It's been very difficult. Joining a yoga class at the Cancer center has helped give me peace. I am now "single" and do not feel confident in myself to "date" feels very strange. I don't mention that I am a breast cancer survivor, I think for fear of feeling like damaged goods. That's the best way to describe the way my "ex" made me feel. Don't get me wrong I am Proud to be a survivor, and I don't hesitate sharing my experience with other women that know someone or themselves have been affected by breastcancer. It feels good to have reconnected with you guys again.

Amy- thank you. I think this is a very difficult time because it is our two year anniversary of starting chemo and one year since my separation. I thought I was "over it" and just spoke to my soon to be "ex" about papers. Feel like I am reliving the hurt - I hate it. Need to be strong and this too will pass.

Quick weird question - does anyone else have occasional random pain where the port used to be? I wouldn't call it extreme pain, more like a weird sensation in that area, not on the surface, but underneath.

Hope everyone is doing well. I am enjoying spring so much. Am noticing more hot flashes lately - wonder if that is weather-related.

Hi all, hope everyone is ok today.

Betsy - sorry that you are having such a hard time with your Mum. I wish her well and am thinking about you.

Paula - good to hear from you and sorry that you are having such a hard time. It sounds like you are a strong woman who has the courage to move forward. I am sure some days will be more challenging than others, but you know you can always come here to talk to us. Hang in there!

Amy - I sometimes get a strange sensation in my port area, and it is still sensitive if I hit it by accident. Your group sounds like alot of fun.

Chelev - good to hear from you. There are so many reminders all the time and especially at the moment. Today I am not having a good day. All the windows are open and the smells from the outside are driving me crazy! I wish I could focus on the fact that I am still here and not on what was 2 years ago. My husband and family are so understanding, I don't know how they put up with me snapping at them all the time. I am very lucky to have them.

Helen, nice to hear from you, how are you feeling?

Lena - hope all is well with you. Titan and Geri, hope you are both ok too !

Wishing everyone a Happy Passover, Easter or just a great day!

Hugs to you all, Judy x