Starting Chemo May 2008

ROCK!! WELL!! You want to send me a hoopa-hoopa-hoopahoopahoopa to go with the choking-squabble-squark-gobble chatterchatterchatter of my WB (whose days are surely numbered..). Thanks, sister. And in a box! It would get a slightly different response to the 'oh-h-h-h-h-h-h-' and 'a-h-h-h-h-h-h-' of Noelle's package, that's for sureI'm trying not to think about the mamm stuff too much but I'm finding that a bit difficult. I was sailing along in cloud-cuckoo land and then, quote, "FUCK! We have CANCER???" I have to remember sometimes that this is not, say, a recipe-sharing forum! I don't see the breast surgeon until Feb 16th, so if I get a call to call to come in earlier, the game will be up..sigh.. Rock, I'm glad you are loving it over there. It's REAL! That's the main thing. I have a few very lovely SA friends here and they are very like Australians, except their elocution is...well...not lazy like ours. The music teacher at my steps' school speaks  the most perfect, educated Queen's English in a kind of sing-songy SA way. I could listen to her all day long. Life is way cool, is it not. XXXX

Evening Ladies! 

Noelle - Did you get cleared for any / all weight lifting?  I am still restricted to 5lbs with the left arm due to risk of lymphedema.  Curious to hear more about that.  I was tempted with the tri in Texas, but I think I am going to do the 3 day in Minneapolis late August. 

Karin - I took the pledge!  Now I need to get over to facebook and get my 16 random things done!  BTW, my nephew told me that if you accept the gifts or hugs, etc., that it opens your facebook for all non-authorized to view.  For all the pros out there, is that true? 

Gracie - So very sorry to hear about your cuz.  I hope that radiation is going well and I am guessing that I you are almost finished - yeah!

RanD - thinking and praying for you everyday!  Hope you feeling better soon!

Jean

I have some good news to share and a bit of a confession.

First, after 5 months of chemo (and 3 echos), I was told last Wednesday that my ejection fraction is back to normal and the pericardial effusion (water on the heart) is also gone.  Yeah!

Last (and this is good news), I will start a high dose of prednisone tomorrow for radiation pneumonitis (scarring of the lungs) which occurred from rads.  Since my ER room visit early December, I have been struggling with excessive fatigue and severe shortness of breath (bone aches, high and low temps), etc.  A high does of antibiotics did not help, so the onc ordered a CT scan that revealed a large white image in my left lung.  I have spent the past two weeks with a pulmonary specialist and have had 2 lung biopsies, another (extended) CT scan, test for TB among many other diseases.  Some things did not add up initially, but it boiled down to radiation pneumonitis. 

The testing started same day as the CT results and were so fast and furious, I thought I would have an answer before I was even able to get back to the pc . . . then one test led to another. 

Sorry that I was not forthcoming with the information, but like all of us waiting for test results, I was nervous. 

Love, hugs and prayers to all!

Jean

Hey, just got home.

My ejection fraction has gone down to 49, but they did Herceptin anyway. The cardiologist at the JCC stops Herceptin if you drop to 44.  So, we keep ploughing and test the heart every month now. 

Jean, The surgeon has given me the all clear for weight lifting and any workouts I want to do. He said that at 1 year from surgery if I have had no lymphodema ( which I haven't) symptoms the chances are low that I will get them now. He said I shouldn't maybe consider a career as a body builder but other than that he has no concerns. He also wondered why I had been concerned about flying when I mentioned it. The studies I have read agree with him. The people at LiveStong suggested I check out lymphnet.org. 

 I am calling my trainer tomorrow to book some weight sessions. 

As for the FB stuff. You only allow new people to see your partial profile if you reply to an email from them. Your Facebook settings are as strict as you set them, and Facebook shows a popup to warn you if anything could change if you click. You should only be getting hugs and gifts from people you have already voluntarily added to your friends list.

Tonight I got to meet some BBC/Canadian TV celebrities at a trade show. Have any of you seenthe British(Scottish) to be specific Home Makeover show designers Colin and Justin?  They have had many shows on BBC over the years and have moved to Canada and have a show here now. I "friended" them on FB last year and started emailing them on a whim and occasionally get an email from them. One of their mom's has cancer( not sure which type) and I occasionally send a note about that. Today I told them I was going to be at a presention of theirs and they told me to be sure to say hello. I waited for the throng of women to stop fauning all over them and told Justin who I was and he about lost his mind! He called his assistant over to bring a book over for me. They had written a lovely note in their new book as a gift to thank me for being concerned with Justin's mom. He was so genuine and lovely I was taken aback. They were very very busy with hundreds of women but stopped everything to talk to me! I loved it!

Love to all.. I have been thinking about Deb all day... 

Women,

Wow. We are just buzzing with emotion. I don't know Deb and wasn't one who traveled to other threads, but I am so sad that she died. Like many of you, I hope she is at peace and in a place that is comfortable. We have cancer. It is not going away. We are living with cancer. We have to face that. We were so fucking busy just surviving chemo and rads that we didn't have the time or the inclination to process that. Some of us have had to deal with this long before we/they were diagnosed as it was a family affliction. That doesn't make it any easier, I don't think, to process. Some of us will die before our time. It will suck. It will be unfair. It will be awful and we will learn to handle it with sorrow, grief, anger, grace, sadness, overwhelm and whatever the hell else we have to do. We will all end up with more wisdom. We already have way, way, way, way more wisdom than most women because we have seen the other side and we are choosing NOT to go there at this time. Sometimes it is not a choice and we are going to have to face that and it is going to suck because, like Deb, we will leave behind loved ones. But let it be known, Ms. RanD, that your stage four does not make you a candidate for that path any time sooner than the rest of us. People live with chronic cancer for a zillion years and one of us might walk out the door and be hit by a falling brick tomorrow morning (although that will mean walking somewhere in an urban area...maybe we ought to stay away from there.). The bummer, bummer, bummer, RanD, is that you ought NOT to be going through such fucking pain. As far as the rest of you go, it is impossible to begin to try to catch up with you because you are abuzz with all kinds of news. I love my foob but still think about recon, but since I am behind you all a bit (except for my herceptin sister, Jen) I just think about it a bit. Jean, I respect that you were keeping things quiet, but know that we are here for you through anything. Keep healing dear one and keep getting through. It humbles me when people from other threads visit us. I feel so honored to be a part of this group. You are rock solid. Now, I am heading over to Facebook to friend request a few of you who I have yet to friend request. I love that we are here and took Karin's pledge and I love that we are there as we are weaving one another into the fabric of our "regular" lives. Good night. I love you all.

Ran, I can't imagine what you are going through. I got freaked out yesterday (completely involuntarily and unexpectedly) by the mamm and US, and then again today by a chat with a plastic surgeon. I wish you were here in Launceston..you get Queen Mary treatment (the royal girl, not the ocean liner) and feck! you have cancer! You don't even pay! This has been a welcome spin-off for me lol! I want your pain gone. I want your lungs fixed. I want you to go to bed and sleep the sleep that a log or a rock sleeps. Or my cat, Christine. I want you and your man to wake up slowly and smile at each other. Not much to ask for, I don't think.  My chat with the PS put the wind up me today. We talked at lot about how dense my breast tissue is, difficulty of screening into the future blah blah blah and now I am considering a prophylactic mastectomy. Bugger me, why do I have to think about these things??? I think I am a bit crabby because I am not drinking any alcohol at all AND it is 36C outside today. People kill each other in this heat....At least that bird has shut upLove y'all, especially you Ran, and Kristy with the sick cousin, feck it all grrrr.

Morning Ladies!

RanD-the older docs I have worked with in the past were always much more gentle with procedures than the younger, newly trained ones.  Experience means a lot.  I worked with an ER doc who was 80 years old and he could work rings around the others-the man could put in a chest tube with his eyes closed and the patient never felt a thing.  I enjoyed working with him and learned so much--I miss him.  Hope that you are feeling better today, you are in my thoughts.

I  had a mammogram on my right breast Dec. 24, just before starting rads.  Don't know when they will want a mammo on the left (it has several cysts), but will talk to the med onc about it when I go see her Mar. 2.  The rad onc isn't as easy to talk to.  

Everyone have a great day!

Wow, Jean. And whew.  I'm so sorry about the fatigue, the scarring, the anxiety.  I do hope the prednisone gives you the energy you need without a host of side effects.  Fatigue SUCKS.

Noelle -- congrats on your brush with celeb!

I spent the day in a meeting with the heads of Cape Town/Western Cape orgs that deal with child and adult sexual assault survivors.  Nitty gritty, wrenching stuff.  Rates of sexual violence are sky high here, as are HIV infection rates.  NOT a good combination.  The dozen or so women in this meeting are among those who helped write the sexual offences act. They are the ones who will try to hold the govt accountable to the law.  I'm working on a proposal to ensure that women victims of assault are provided with post-exposure prophylaxis (PEP) for HIV infection, in keeping with the sexual offences act. It is all very humbling and inspiring and fascinating.  Not to mention, exhausting.

(Jen, you're welcome to the curl in MY hair.  For that matter, I'd take a couple pounds, too.  I'm starting to look like a giraffe.)

mmm Missouri. I have only been there once and very briefly for a wedding. I was big Mark Twain reading kid and always loved the idea of the 1800's on a river boat. Funny that my black/mixed race heritage would have prevented me from actually being a passenger during those times... never occured to me until just now. Scrubbing the decks was not my idea of riding the river!!

I am in the store alone, another mini snow storm has paralyzed the town. I deeply hate how people here let weather dictate their buying patterns. January is stupifyingly slow and the snow is not helping matters. I adore the snow! I can live in almost any country in the world ( EU, US and here) and god help me Vancouver if I like but I chose here because I like the weather changes.*sigh*

 RanD, you are on my mind all the time. My mom always loved the older dr's, we had quite a club of them on her cancer team. 

email me if u want the links to getting fave my curly hair prods in the states. Lauren I am going to email u now about this. Don't forget, my site is in Can$ so for most of you the prices are cheaper because of the exchange rate.  We are hoping to have a US shipping facility by summer but it is hard with handmade products as they don't sit in warehouses well. 

Gotta run, it is a slow day, so I should put a dent in my to-do list. 

 xoN

For all those that need one today

Jean - you should never feel the need to apologize to us!  Holy moly sweetie...you've got enough going on.  First YAY! on the heart.  That is awesome!  I think it is safe to say that all of us understand how worried/scared/nervous you must've been.  Who'da thunk we'd say YAY! at radiation pneumonitis?!  Will the pred heal this condition?  How long before Jean is feeling better?

You know we are all always here for you.

Randie, I had my choice with the Onc I have. Should I take the newby fresh out of college or the older, more experienced. I didn't have to think very long about it, I chose the experience and I sure am glad I did.  Sure hope your feeling better.

Jean, don't be silly. I'm just so happy that you can control it with meds. Will the steriod clear it up and help your breathing?

Noelle, so sorry for the slow down but maybe we'll see more of you here? Love to hear your stories.

Crazy ass busy at work. Tomorrow is my support group. I designed their flyer for an oncology group that's having an open house next week and working on the website. I'll let you guys know when we go live. Hi to all my buds.

Mary 

Happy Birthday Roxi!!!!!!!!!

Eddie - Well said (on both accounts)!  I have not jumped to many other threads either  . . . .  but the news of AlaskaDeb hit with a very heavy punch - how incredibly sad - cried as I read through the thread. 

RanD - Your spirit is amazing and it will carry you through this!  I seriously cannot imagine what you are going through.  I was gasping for air during the biopsy - fish on the dock painted a crystal clear picture.  Hello, would it be to much feckin effort to roll the oxygen over here???  I pray that you have peaceful days ahead.  Thank goodness for the older doc and your persistence! 

Thanks to all for understanding . . . good news is that prednisone will correct the majority of the scarring.  The doc indicated that only the top 3% of conditioned athletes would feel the small residual - not me!  It will take 2-3 weeks before I am feeling better and I am looking forward to that!!

Last, I used product in my hair for the first time today since shaving the head!  All of my product had dried up, so I am looking for some new stuff . . . . Noelle???   I will send you an e-mail.  I want to make the most of the few curls that I have!  Never had curly hair and it is fun.

Rock & Kerry - I really appreciate the stories from your beautiful (and warm) environments!

Love to all and goodnight!!  Jean

Eddie - Wow.  You just have such a way of saying what's on everyone's mind.  I have missed you and your words. 

Randie - What an ordeal!!  Yes, let's hear it for experience!  I'm really hoping for a plan that makes sense and gives you some stability with all this uncertainty.  Mostly, I hope you NEVER have to go through that BS again!!

Jean - I'm not sure what I missed (haven't been to FB yet, maybe it's there), but I hope you're feeling better, too.  I have asthma, so I also get the "fish on the dock" analogy.

Roxi - I guess I need to say Happy Birthday! 

Kerry - It took me several minutes and more than one read to realize you sleeping cat comment was not about me.  Duh!

I am in the midst of deciding whether or not to make a job change.  There's way too many details to explain, but political agendas and bureaucratic policies should sum it up.  Part of my decision is also factoring in my health.  My stress level at my present job is waaaaayy too high, and given what felt like the sudden onset of my lump last year, I just can't allow myself to continue to do "business as usual".  By the way, it's not the inmates.  Sigh...I will miss my students.

So...on a completely different note, here's what my 5 y.o. said to me last night regarding the death of her bird, Pickle, who is now buried in our backyard.  "I think on Friday I'll go out and see Pickle."  I say, "Okay, sure, you can visit the spot where he is."  She says, "No, I want to see him."  I say, "Ooohhhh (as it dawns on me that she is serious), no, honey, we're not going to dig up the bird.  But you can stand next to his little cross and talk to him."  She says, "Okay."  Oh, to be 5 again (not really!), I just like the innocence of it.

Off to FB!