was re: exercise/miscellanous

HI there- I sent this message in a couple of days ago- and the notice that it was submitted showed up- but the message never did. Not that this is important or anything but...I think I will try again

***
Now Marty, we are going to want to hear all about how things go, ok? So dont forget to write and tell us! Will be praying those lymph nodes are negative.

You asked what kind of BC I have and how old I am
First of all I am 51 and have three kids- all -starting this Fall- in college! Yikes, huh? Oldest is my daughter Marisa, who will be 24 and is in her second year of graduate school at Univ of IL/UC. Second is son James who is Jr there at UIUC too. The baby is John who is 18 1/2 and will be attending local college here.

My diagnosis was DCIS and DCIC (or would that be IDC?)Nuclear grade 3, histologic grade 2- tumor was 1.5 cms. I found teh lump myself- and had a devil of a time getting the appointments all straight -didnt seem to be much of a hurry to anyone but me! I was thinking of your problems with the insurance- and my thought when I was having trouble getting those appts settled was "dont they realize I could have cancer here!!" Like..."hello!!" I could die maybe? Sigh. Anyway...originally we had the lumpectomy and nothing else. When it was found to be invasive cancer we had to go back in the next week and reopen the excision and clear up the margins a bit better- which was lucky because they did find more cancer cells- and we removed some 10-15 lymph nodes. We had WANTED to do the sentinel node type biopsy but there were some scheduling problems. Nodes were negative which was good! Then we got the results back on hormone receptors- which I gather is the one result you WANT to be positive? Anyway- mine was negative and the HER2 was a plus 2- which I understand is associated with more aggressive tumors. The DNA and MIB-1 Ki-67 results were in the unfavorable range which is associated with adverse prognosis And Ihad a high level of Cathepsin D- which is a predictor of shortened recurrence-free survival. However, my p53 results were favorable- which in node negative BCs is associated with favorable clinical behavior. Let's see...anything else? Cant think of any right off hand. That is enough for me! So from there I went off to see the wizards...I mean the oncologists! I was led to believe we would start with radiation- but that isnt how it turned out. I saw the medical oncologist and he said that we needed to address this cancer aggressively and that we needed to be concerned not only about the current cancer but the very real possibility of recurrence in my other breast. They looked at my veins and discussed how the level of Adriamycin I would need to be taking could damage the veins,etc...I guess it is so powerful that the drug can eat away at your skin (necrosis) if there is leakage?!! I was sitting there looking at my poor hand from what the anesthiologist had done the previous week- still a spectacular rainbow of bruising and yuck- and I have to say I didnt have to think TOO hard about whether to get the catheter implanted. I was insisting on going to a week long out of state event connected with my kids and my job with a non-profit organization called Destination Imagination- which didnt make them all too happy...but they agreed that I could if I was sure to rest ( haha) and we would start the treatment as soon as I got back. Of course I agreed- I was anxious to do that too! So- we had that port installed before my trip...my husband had been concerned that I was rushing to do it and would then have the whole week away to have to deal with the soreness etc. He reminded me that the Dr said they could use the port the next day if they had to- I kept saying but...gee...that seems like it would hurt maybe? Just because they CAN doesnt mean it is what you should do! Seemed to me to be worth it to have two weeks to recover before accessing it- if possible. Last week while I was waiting to have blood work done, there was a little lady that came in and she was softly complaining about how much her port hurt- she was still bandaged and would be having her chemo the next day using it! Yikes. Yeah...I am a baby about some things. But if I had HAD to do that I would and beeen fine. I am also fairly stoic when I have to be. I dont think the port "hurt" btw- I think it was kinda uncomfortable more than hurting. And thatmakes sense- that it would be a little uncomfortable.

Anyway...I think the chemo has gone fairly well overall. And it looks like 4-5 crummy days then a week or two of relatively less intense stuff. The low blood counts certainly make it more complex...but the shots are not too awful. Annoying but not really PAINFUL. Perhaps it is from my vantage point of having three almost ten pound babies that helps me keep that in perspective though

I thought it was neat to see how Lisa has been able to keep up with her tennis and her golf. I have found two books lately that talk about breast cancer patients and exercise. Breast Fitness:An Optimal Exercise and Health Plan for Reducing Your Risk of Breast Cancer by Ann McTiernan M.D. Ph.D, Julie Gralow M.D., & Lisa Talbott MPH (St. Martin's Press)is a good one and it led me to a group called "Team Survivor" - I just wrote to them about joining. It looks like they have affiliates in both Chicago and Milwaukee and are interested in starting one closer to me- half way between the two They have a web site if anyone is interested http://www.teamsurvivor.org/events/index.html The other one is Essential Exercises for Breast Cancer Survivors (Halverstadt/Leonard). I found both books at my local library but they are also available through Barnes and Noble online for fairly cheap. I decided to order some books from there recently and did a search under "breast cancer"- it is helpful to see what is out there! I pre-ordered (yet to be released ) a cook book and a book for chemo patients -it is exercise plans for them. I went ahead and reordered that one because altho I hope to be done with chemo soon- I still have my m-i-l that will be doing it for monthes. I will let you all know if they are any good!

But about the exercise stuff- in the one book it said that while doing chemo you should not be exercising above 65%- and you cant really do a complete stress test right now to determine what EXACTLY is your maximum heart rate- so do that the old way- 220 minus your age and then take the 65% off that. The frustrating thing is that it doesnt take much to raise my heart rate right now! I cant really RUN- I have to walk and not really over 3.5 unless my heart rate is to rise too high. They say that walking and exercise can help you with fatigue- but too much or too intense can make the fatigue worse. I can only assume with my low blood counts that could be an issue too. I plan to discuss this with the Dr on my next appointment just to be sure. I do know better than to get on the treadmill when I am dizzy etc.

OH..Marty! The other thing I had done before starting treatment was to have a muggascan- not sure if that is the actual wording etc but it sounds like that. With the level of Adria I am taking- it can cause some heart troubles- so they do this thing with nuclear dye and a scan- it is no big deal at all but apparently very interesting. I didnt see much- but my husband got to see my heart working in all its glory

Well- thanks for the opportunity to chat! If you want to talk privately some time- DO write to me at LDRunnrMom@aol.com We also have a family web page- the following link is to the latest outing I went on and has my WIG- the last picture! It is really very nice but I dont bother with it much. I am sure if we went out to dinner,etc I would - but for every day I dont care that much. Too hot! I do have a wig that has the top of head open ....maybe I SHOULD wear that to justify the expense of getting it...it is hard to know when you first start out- what you will feel like later.http://www.groberg.net/Heather_6002.html

Hope today is a great day for everyone

Chris