Starting Chemo April 2009

Happy New Year Judy!

Happy New Year, Judy! Oh wow, before I forget -- you too Helen, right? :-)

You're right, Amy, I don't do video games -- or Microsoft: don't know if you knew that, though! LOL on being glad he's working at least! 

Hi all...

Happy New Year to all of you!

We had a wonderful trip to the Olympic National Park. Yes..Amy that's exactly where we went. Can you PM me your email address. I have written up details of our trip and suggested changes but don't know how to do an attachment on this site, its easier for me to just email them to you.  July should be a beautiful time of year to go there. Kudos to your SS...working for Microsoft should be a fabulous experience for him. Seattle is a beautiful city. As you get closer to your trip, let me know if you want any hints as to where to stay in Seattle etc. I go there regularly for family events. Not as much these days after both of my folks passing. But I still have a brother and two sisters there. We've knocked around the idea of moving up there after we retire.

I just got home yesterday so still don't have any results on my biopsy. BUT...I got three msgs from the drs office while we were gone. 2 from the nurse and one from the Dr. So based on that, I'm mentally gearing up for bad news. The worst part is the waiting. I couldn't sleep last night. I'm frustrated I am finally feeling better from truncal & arm LE and don't look forward to another procedure to set me back. But I guess it could be worse, so I will not whine too much.  I'll know more tomorrow.

Last week my sister, the one that was dx w/cervical cancer was dx with brain damage from the procedure. It has affected the right portion of her brain. My other sister, surgical neuro nurse, thinks she had an air bubble or blood clot that cut off some of the functions of her brain. She has been struggling for a couple years now. She is unable to write, do simple math and process logically.  It makes me very sad and now I'm a little nervous about any more surgeries that I might be in my future. One more thing to worry about.....

I'll give you an update tomorrow.

Wedding was wonderful. Details to follow.

Hoping for good news for you Betsy

Wedding updates coming soon!

Lena - how are you doing?

Judy - glad you had a nice New Year

Tired - off to bed...Geri

:-O OMG Betsy!!! The trip sounds like it was wonderful, but otherwise, IMO your news really SUCKS!!! About both you and your sister! :-*( Were you on Tamoxifen? I don't recall, sorry, it's probably that darn "chemo brain is forever" crap. Curiously, why do you need a new oncologist for this -- did the one you had originally only work with breast cancer patients? My original onc worked with various kinds of cancer patients, but the one I have now is in a special breast department, so she only sees BC patients.

When's your surgery? And yeah, go for the "full service" thing -- LOL how you put that. Wish there was something I could do so I could die pretty! LOL

One more thing -- I know exactly what you mean when you say "I was just beginning to feel good again, and now this." That, between major episodes of "shitty," has been the story of the entire past two and a half years of my life! So I just so happen to know you need a hug. {{{{{Betsy}}}}} 

But....even though I'm still a long way off from "pretty" (particularly with "Return of the Awful Ascites"), I did get to a new milestone in that direction: I can finally put my hair in a ponytail. Funny thing is I hated ponytails when I had my long hair (I only wore them when I HAD to -- working in the lab for safety reasons, or cooking/eating so I wouldn't get hair in the food) -- but now I'm thinking it might get me through the rest of the otherwise "icky transitional" stage my hair is at, which is STILL sticking out like I stuck a fork in an electric socket. It sticks out at a "longer" point now (and it's still not long enough to get rid of the ultra wavy either) so it still doesn't look good, but in the ponytail at least it doesn't stick out and look quite so ridiculous. I don't know what made me finally decide to try it -- oh yeah, yesterday just before getting into the shower, I found one of my Pack Rat's ponytail holders in the bathroom. My Pack Rat is coming over for dinner tomorrow, I'll put it up and see what he thinks of it...or should I say, if he even notices! LOL  Making chicken parmigiana and salad (if I can get up the energy to go to the store) or spaghetti (I already have that in the house). I think it's the ascites, not the new chemo (yet?) which is making me tired -- it's back to always being in the way, "juggling" my insides when I walk, being short of breath -- exactly the same as the first time, which was before I started the oral chemo. Tomorrow though, I'm supposed to ramp up the cyclophosphamide from half a pill to a whole pill daily, since the first week has passed and I was able to handle it (with the help of one or two daily Compazines). Well...we'll see.....

My little grape tomatoes have been REALLY yummy as they've ripened (waay better than the ones I was buying in the store), the cucumbers came out yummy too. Think I'll be pulling the last of the carrots up soon too. If I'm not too wiped to go to the store and buy salad stuff (lettuce and celery anyway), I'll pull 'em tomorrow to put in the dinner salad (along with the last cucumber and a few more of my little tomatoes).

Gotta go.... 

Six month check up with onc tomorrow (well, really with nurse practitioner). I am not really nervous since they haven't done any testing and I figure she's just going to ask ME how I'm doing, and I will say fine.  I did have that hormonal blood test to see if I am truly in menopause and I will find out. I am betting 'yes.' But that doesn't mean much - just that I can switch to an AI from Tamox if I want. But I am thinking (at this point) that I will stay on the Tamox for the full five years and then be able to do another five on the AI.

However, I really want to know if Betsy's cancer is attributable to Tamoxifen. Maybe I would go off sooner ......

Betsy - good luck at the appt. Please post full details. We are all right there with you.

Amy 

Hi all,

I have been taking tamoxifin but after receiving the dx, I decided to call my medical onc to see if he wanted me to continue. The answer is no. So today was my last tamox. The triage nurse asked the doctor about the percentage of people on tamox that develop uterine cancer (endometiral lining is the lining of the uterus) answer is:  2%. Recall, I have been the queen of se's for just about every drug I've been on. GRRRRR. The triage nurse greeted me with "shit, damn this just sucks". I couldn't have stated it better myself, which of course made me LOL. I told her I most likely will not go on AL, do to my propensity to get the worse se on the list. No way am I dealing with those se's. So after surgery I plan to see a naturopath and a dietitian.

I have my appointment next Wednesday at 3:00. That's when I get the battle plan. Based off my research on the Internet, it's pretty standard to do a complete hysterectomy including a bilateral sapingo-oophorectemy (removal of the ovaries & fallopian tubes) with Stage 1. I don't know my stage yet but the grade is 1 (1 out of 3) which is good. I asked the person scheduling me what the GYN Onc's appointment schedule looked like he said he was pretty much booked up through Oct. So I think surgery will happen some time in November. At least that's my WAG. The staging looks even more complicated than bc.

Lena, to answer your question as to why a got a different onc. It's because he is a surgical specialist for GYN and my breast Onc just specialized in breast surgery. My medical onc manages all the different specialists. My regular GYN said I need to go to a specialist. So hence a new onc. I seem to be collecting them. I think they think this is a new cancer, not necessarily related to bc. Although, many of the same issues (excess estrogen) cause endometrial cancer.

So there you have it all ladies. Amy and any one else on tamox if you have any unusual discharge get into your GYN ASAP. I'm thankful I didn't ignore it, like I wanted to.

Amy & Helen-good luck with your appts. As Roseanna Roseanna Dana said "IT'S ALWAYS SOMETHING".

Ahhhh. Happy Happy Hump Day!  ;-)

Betsy - I am highly skeptical about the increase of uterine cancer being that low on tamox. I've read that the findings and the way the drug co presented the stats left many people dubious.  I still am taking it, but I think that .2 - .5% (which is HALF of one percent, if I understand the decimal point correctly) is too low. 

Saw the onc's NP yesterday for my six mo checkup. All went fine. BUT she busted me on not getting my gyn checkup. I had put it off since last year when they did an MRI for something they saw on my ovary. Turned out to be nothing but totally freaked me and I just didn't want to go back. BUT in honor of Betsy and because I promised the NP, I saw the gyn this morning and all is fine there too.  I am relieved I did it - it felt like a guilty secret that I had not gone.

So all is fine on my front. Betsy - when is surgery? 

Feeling more recovered from the wedding. When I can face thinking about it, I will write a short summary for you. For now, I'm still enjoying it being OVER.

Amy 

Ok the wedding. It all went fine.  Everyone was happy.

But...you have to go back to the beginning to get the whole picture. When DH's daughter got engaged, he and her mom (his ex) both felt that a big wedding (or even any type of wedding, really) wasn't in their culture, wasn't something they would do. The ex wanted to have a potluck, so that gives you an idea.  The bride wanted something very traditional - banquet hall, first dance, white dress etc.  I was the one who convinced my husband that we should do it. And he agreed, but with some reservations.

So as it has progressed, I have felt this silent pressure because I am the one who pushed for this (and paid for most of it). I was FAIRLY CERTAIN that he would be glad he did it once it happened, but I always had this little fear that maybe he would not.  So as the time got closer, I got more and more tense about it.

I got my hair/makeup done, and when the girl handed me the mirror to see myself, I just burst out crying (TOTALLY not like me). So I guess I looked good for about FIVE SECONDS! Lol.  I just was very high-strung about the whole thing.

The groom's grandparents (who raised him when he was a baby) did not attend because of the drama, but that is probably good. The groom's mom did attend, but looked pale, shaky and weepy through most of it. I sat her between my mom and my daughter at dinner (as she had no family there) and they talked her ear off and kept her occupied. A labor of love, to be sure!  She left shortly after dinner, and I was relieved once she was gone. 

The ceremony went fine, the dinner was lovely, the bride was radiant. They all had a great time dancing and having fun.  I felt more like a spectator/planner than participant in some ways but that was fine. Once I saw that it was going well, I felt much more a sense of relief than actual happiness - but hey, relief is GOOD.

When we got home that night, with our car full of the presents, her bouquet, the top layer of the cake etc,  I asked my husband what he wanted to do. He said "I want to pour myself a whiskey, and sit down and tell you how much I love you." He thanked me for loving his kids so much, for planning the wedding, and said that it was one of the happiest days of his life (along with when his son won the football state championship - but we won't tell his daugter that!).  THEN I felt like it had all worked out, knowing he was happy, the couple was happy, and everything had gone off without a hitch.

BUT on Sunday and Monday I was so tired (both physically and emotionally drained) that I could barely move. Just thinking about it felt exhausting.  But I am better now.

The happy couple stopped by on Sunday and gave us each a massage gift card. I am THRILLED - it was the perfect present!  They are in Hawaii now for the next week or so.

So whew - we made it.  My last daughter is 26 and not anywhere close to getting married, and my stepson is 23 and even further away from it. So I get a nice long break, where I can go to OTHER PEOPLE'S weddings and have the fun without the work!

Do I remember that Titan's daughter's wedding was Saturday also? I hope she comes to tell us how it went.  She hasn't been here for a little while, I think.

 Amy 

Amy, what a wonderful event. You are a saint to have made it work. The comments from your DH was really the icing on the cake. Congratulations.

Geri to answer your question, I had a major...I mean major pity party last night. I was waiting for my dh to get into bed and was going over the past 4 years in my mind, thinking of all the medical issues I need to write down when I go to my surgical appt. next week. First my Dad getting very ill and dying in Dec 2008, my Feb. dx, surgery, chemo, rads, sister 1 cervical cancer, sister 2 endometrial cancer in 2009, 2010 dealing with truncal LE, arm LE, tendonitis, 2011 my Mom dying, sister 2 brain damage from a stroke or surgery (she is 53), now my new dx. I started crying more like sobbing when I recalled my mom telling me on her death bed to take care of my dh! She had had a stroke and I think she was trying to ask my dh to take care of me but we all had a very good laugh about it. All the memories and grief just came flooding back...  My dh heard me and came running in to find out what was wrong. I tried to tell him through the tears but I know I didn't make much sense. He just held me. I feel very thankful that he is so supportive but I'm still feeling very down and tired.

Work is crazy as ever. I reviewed 97 applications for the new job in my department on top of all my normal duties and trying to catch up from my 2 wk vacation. It's been a long week. Next week I have ten interviews scheduled. TG I don't have to do it all myself. And after training the person should provide me a huge relief. I'm basically going to train them to cover most of my desk. After my sabbatical next year (summer) I may just quit working. I think my body is telling me something.

Sorry my posts are all about me...I hope everyone else is doing well. Judy I know exactly how you feel about your looks and wanting to look good even though you don't feel like you do.

Lena your posts about a ponytail have inspired me to grow my hair out. I've been waffling for several months on what to do, now I have a plan.

I'll write more when I have more energy. Have a great weekend all.

Betsy

Betsy, you are amazing and very brave. You have been through so much over these past few years, so you are more than entitled to have as many pity parties as you please. As Helen says, you can always come here and talk about yourself as much as you want or need to - that is why we are all here, because we know we have a support system that understands how we are feeling.

I am thinking about you often and sending you ((((HUGS))))!

Hope everyone is having a good weekend, hugs to everyone too, Judy xxx

Lena, glad the procedure went ok for you and that you managed to eat something comfortably. Now I hope you are resting up.

Betsy, how are you doing today?

Is late here, so signing off, hugs to you all, Judy xxx