February 2011 chemo pals

jenn- I don't think I would be able to hold off the "why me" question if I was in your shoes right now - I am a combination of worried for you and hopeful for you.  I keep coming back to it being both sides - which is more unusual, and having had chemo so recently, that it must be endometriosis.  Follow your gut on the surgery and keep us posted.

Jenn- I'll be praying for you!

 I still have my port. I go to the surgeon on the 14th..hopefully I can get it out soon! I was done with rads 3 months ago and was told to wait for it to come out. I don't want to wait any more. 

Jen,  I just logged on and saw your posts - oh no - I am so sorry to hear the news that you have something major to worry about at this time.  Will it take a while to get the results after your hysterectomy?  I assume the biopsy results might not be immediate, and the waiting is sometimes the hardest part!  But you're moving quickly to deal with this and sounds like you have some very qualified surgeons to choose from.  Please keep us posted.

Laura

jenn - certainly thinking of you every day and glad that this second doc is more hopeful.  Is this the one that is more local to where you live?  I think we should all celebrate our b-days every month anyway!!!

pejkug - once the port has been removed it can't be placed in the same location.  If you check the stats on recurrence for triple positives, if it is going to happen it usually does in the first several years, so some oncs advise just keeping the port and having it flushed. 

Hello Chemo Sisters,

For those in the hair-watch group, I am proud to announce today that my hair is now officially... ONE INCH LONG!  When I wear my nightcap, I can pull it back just enough at the top to show some tiny bang-type hairs, blondish-gray!  Really doesn't help my appearance at all, I still look like a cancer patient.  Oh, those dark circles under my eyes, still a roundy face from weighing 30-some pounds too much, my eyes are bloodshot and tiny pupils from medicines.  I would put a picture, but never could even get a real picture of me on here, wouldn't show my "now" without a "before."  Otherwise you all would think I was a street people.

Ummmm, just a simple update, cannot recall my last one.  After chemo from mid-Feb to begin of July, had modified mastectomy begin of August, then rads went from mid-Sept to end of October.  So, now I'm a week out from end of rads, skin feels much better, looks better than it was, but not better than real life.  See, good grief, that scar situation, along with peeled, red, brown skin, it's a shocking sight, to be sure, to the untrained eye.  That is the visible part of breast cancer, sort of gives me a jolt when I put on my special lotion.

I pine over the loss of my hair, tho, too.  I just cannot get over how much it affects my beauty.  I am not beautiful.  But since I am 60 years old, overweight, and sort of gave up on looks maybe five years ago, I have not been beautiful for many years.  Soooooo, recently I got into the idea of dressing better.  I saw a couple TJ Maxx clothing store commercials on TV (anybody else see those?), and I was SO impressed with the latest styles being incorporated into my sort of casual hippie attire. 

Does everyone still wear what they wore when they were in their 20s?  Well, I want to update my style just a little, I want to wear at least one garment that fits, and I love these longish scarves, plus bright color tops peeping thru.  So, when I get some extra cash and some extra strength, I will go to TJ Maxx and buy a few items, to cheer up my wardrobe. 

So, while I am not beautiful now, I DO know I actually want to go shopping again.  This is the basic female instinct, and I had lost it, long before cancer, and after cancer gave me the gift of SEEING how wonderful life really is, thus I have become much more keen on retired interests, which also includes music, art, gardening.  Besides, when I go out to eat with my folks mid-November, I am going to make an effort, I have ONE new outfit I bought last spring when brother's family was going to visit, and I'll put on makeup (maybe even coverup for my dark circles), and MY WIG.  Yes, I shall wear my pretend hair and no longer use the cancer card to convince everyone that I really CANNOT do regular stuff "so don't expect me to drop by anytime soon" thing.  But I don't think I can blend one-inch hair into the wig, to make it more natural. 

Sorry for the ramble.  But you know I DO ramble.  Well, happy November, sisters, and see ya!  GG

fuzzy - Hi! I know what you mean about how the head is working these days - the leaving active treatment part, and looking to the future...  I do know what you mean.  And, thanks for the compliment!

fuzzy - I think one of the hardest things about a BC diagnosis is how it changes how others see us and how we see ourselves.  I think it messes with our heads - makes us deal with others, even those who love us, differently.  My bullshit tolerance meter is significantly altered - I just don't have time for it, and I think that my patience is much shorter.  I have a lot of interests but I find it harder to listen to others if what they are talking about bores me!  I think when we become fearful about the future it shapes our responses in the present.  You are right - it is unsettling - everything about the last year or so has been VERY unsettling.  I know in the abstract we all live our lives not really thinking about our own mortality, until you get a wake-up call like BC.  Because our futures are now somewhat uncertain how do we grasp on to what we want, or care about? How do we move forward from this point? I am not sure what the answer is to how to handle these changes other than to spend some time in the exact moment that we are in, since that is all we really ever have. Recognize that the feelings you have right now are a cumulative result of the assualt of treatment, and there is no way for you to be yourself at this point in time. We can hope that time will heal us and in the meantime we need to treat ourselves gently and without too much expectation.

Oh fuzzy - so glad I said what I did then! 

dogeyed - hello!  I have been participating in a research study, referred by my surgeon.  It is through the University of South Florida (my DD goes there) School of Nursing and Moffitt Cancer Center (NCI designated) and involves Mindfulness Based Stress Reduction. The study is aimed at women leaving active treatment and facing the uncertain future - just the point where we all are! What they do is take blood and saliva samples at the outset to measure cortisol (stress hormone) levels.  They taught us gentle yoga, meditation, visualization, identification of emotional triggers, etc.  This was done in a weekly 2 hour class for 6 weeks.  We were supposed to do up to 45 minutes a day of both informal (like while you are doing the dishes) and formal (sitting quietly with eyes closed) meditative practice.  Then we did the blood and saliva again.  The next six week period, which I am in now, is done completely on our own, and then we will do blood and saliva again at 12 weeks.  I have found that through this guided process I have a better ability to just experience things moment to moment.  If I am feeling stressed I can do the formal meditation (I try to refrain from this in public!  Ha!) and calm myself down.  It is kind of like Lamaze breathing for labor.  I think too much looking forward, as tempting as it is to look forward to the good things, is a little bit dangerous for us because of the possibility of bad things.  Getting too twisted in what the future may bring does not allow us to maximize what we are doing right now.  I think too, and I am quoting the instructor, we are human doers and not human beings.  We may need to "do" less and "be" more.  Take some time and breathe and relax and just "be" and as inner and outer strength returns we will be better equipped to handle whatever comes next.

dogeyed - I do think we all have PTSD to one degree or another having come through our treatments.  Even though we have all been strong, and weathered this storm, it can't help but take a piece of us.  Learning how to function in the aftermath takes a concerted effort.  In the past I have been guilty of cramming too much into the day, and if I am sitting idle I am wasting time.  I had a really clean house, fabulous meals on the table, lots of volunteer activities, drove my kids and all their friends to school, practice, the movies, etc.,the clothes were clean and folded but I was EXHAUSTED!  I am still trying to be organized and efficient now but I do things with more intention, not just blindly going through the day trying to get everything done.  There has to be room for quiet time and restorative contemplation, right?  I still don't really sleep well, but I didn't before BC either.  I just began reading again and I enjoy that - sometimes it makes me relaxed enough that I can fall asleep. I am glad that you think the meditating is a good idea - it isn't my idea, I just messengered it to you! According to the results in the study, it really does work. This is one of the first studies to quantify the results with the scientific measurement of stress hormones. 

jenn_h - when you come home and are laying or sitting, put a pillow over your abdomen and if you have to cough (or sneeze, or laugh really hard!) press the pillow against yourself.  Both my kids were c-sections, this is what the nurses told me to do.  It still hurts but the pillow helps a lot!  Good luck -  glad you are feeling peaceful, please know we are all sending you our best, and our love.

Hi everyone,

Just checking in with my favorite Feb chemo support group.

Special K - I love that line that you used- that we need to be human beings and just "be" once in a while, not human doers. So true. What an opportunity for you to get to participate in a stress reduction test. Most women have to pay for a session like that!  I will take your advice to heart.

Jen- Hope your surgery goes smoothly. I had a laproscopic oophorectomy 3 years ago.  There were three incisions and the surgeon used something called a DaVinci robot.  The recovery required 4-6 weeks of very little activvity, but I do not remember being in pain at all. And then when your ovaries and everything else is removed, you didn't need to worry about those organs anymore.

Laura

mamaoftwo - I actually got paid for the research study!  I still have a few weeks to go of daily practice and diaries, but they gave us $80 at the first meeting, $80 at the 6 week point and I will get $80 more when I go in a couple of weeks for labs and to turn in the dairies and logs.  They gave us Visa giftcards so I just put them with my holiday money to spend on gifts.  It was very valuable to have the instruction and guidance and to be compensated on top of that is a bonus!  They keep thanking us for helping them, but it has been such a two-way street.  They are hoping for a total of 400 participants, and I believe that our group of 11 put them over the 300 mark so far.