Starting Chemo in JAN 2007

Oh..and Mary if you continue to have a problem with the spreadsheet PM me your AIM screen name and maybe we can figure it out together in real time.

Mary, I am sorry about your brother in law. Such a sad story, and so hard on all of you. I do try to be sympathetic to the stress this has caused on husbands, but it's a little hard for me. As women we are so used to taking care of everyone and powering thru. I have decided that this is my turn. I expect to be taken care of a bit, and if I don't get it, I take care of myself. I have done less and less in terms of errands, house maintenance, etc, and sometimes he picks up the slack and sometimes it doesn't get done. Of course, your husband lost his brother, and that is terrible. So he gets on free pass. Your poor sister in law. Did they have children?

Nancy please call your dr. It's probably a bug. and I am curious too re another taxol after the 12?

Caya, glad you are feeling a bit sharper.

Viddie, I have heard expanders hurt. Poor baby. At this point, I am not planning on reconstruction. I think it all depends on where you are in your life, and you are much younger than me. I am going to ask the dr when I see him next week to take a look at the scar swelling though; it is still substantial and makes the prosthesis uncomfortable.

Mel, I loved your wedding story too. My 39th anniv is coming up in June, we were 19 and 23, such babies. Even for that time.

Taxol 5 went fine, though I went to bed at 6. It just wipes me out completely. My son came home after I went to bed, so am anxious to see him when I get home from work. We have him for 10 days and he is such a sweetie.

Good day all,
Melia

Mena called Tuesday night. I was in the grocery store and the connection was bad so I had to call her back at home. I had guests coming and was getting ready for them, but nothing was going to stop me talkin' to Mena!!!

She was sounded very upset at first, almost like she was crying. The Zeloda is really getting to her. It's doing a number on her hands and feet and she says she can barely walk. We talked about that a bit, and then she told me that she can't get near the computer anymore. A few weeks ago she got a very sad email from a lady who was going into hospice and she couldn't answer her, and since then she can't get online.

She has tried many chemos, and now she's on Tykerb and Zeloda and is having lots of problems. And she has no choice, because this is the now the latest hope at making the tumors shrink. At first it was the nausea, and when we prayed about that it went away. Now it is these neural problems in her hands and feet...let's pray about that too!!! And that the tykerb shrinks all her tumors away and gets her back to normal....

We can do it!!!!! We did it before.

Anyway, we went on and talked about me, my life, her life. It is always so wonderful to talk to Mena, to hear her throaty guffaws when you tell her something neat. She had a wonderful Mother's Day. Her son who has moved out of the left her a nice plant for her and her daughter woke her up early to a lovely breakfast table with flowers, pancakes, a full menu, and a gift. She was very happy about that.

Mizsissy

Oh my I am soooo out of it, I am not having any more than 12 taxols! Why I wrote that is completely beyond me and now I am really scared. 13! My goodness. I wouldn't wish more chemo on anyone. Please forgive me for I know not what I do or say.

I don't know who else is doing rads but it was no piece of cake, though it seemed to start out that way. The fatigue is slow to hit, but once it does..WOP!

Today was my 30th Big Shot. Then I get 7 little shots to the scar. My boob is cooked... I am wondering, what is the point of keeping a cooked boob? I guess it will bounce back.

Very, very tired. I've been sleeping very, very late every day and today I decided I need to wake up at a decent hour so DH called me at the crack of 9 am. Gee, that's almost 8:30, almost decent. So I made my tea and oatmeal, drank it and ate it and felt good for about one (1) hour, then I got so damn tired I didn't even want to get out of bed.

I am not one of these people who can be sick and lie around and not feel like a total degenerate. I got my jeans on and made the bed but I felt awful. Did I mention I am wearing a heart monitor? My heart is not dealing with all this very well and is getting very arrhythmic. But I haven't even been wearing the damn thing for the last week because the electrode spots were getting too red from the radiation treatment. So I put on the heart monitor and had some fun recording "events." There were about three of them.

How to deal with this? Well I decided that after the LAST ZAP I would come home, have a glass of red wine, and cool it. Send hubby to the meeting of the Tree Committee tonite of which I am chairman.

And the worst part of it is that I am gaining weight for the first time in treatment...well only two pounds, but I feel like a slug. For the first time in 20 years I can do only mild exercise. I've turned into a carbo freak. DH is out buying Coconut Cream Pie as an end-of-radiation celebration--at my specific request. Tomorrow I'm on Atkins!!!!

I am glad I have insurance. Saw my bill online today; it is $2200 every time I walk through the door of the Radiation Oncology Clinic. Multiply that times 30. Whew! Fortunately the insurance paid every penny.

Hey Amera, how are rads going. Any body else here?

Mizsissy

Oh, in reading my 1" thick file today during my infusion I read that I am 90% estrogen positive and 10% progesterone positive. In another area, it said I was progesterone negative. Hmmmmm... It said that my HER2 score was 2+ and the FISH test came back as "amplified". Lynn, I recall you using that term I think. Oh...it also said I had DCIS comedo/solid cribiform/high grade. I assume this was in addition to the IDC in my right breast I had lobbed off. Who knew...

Based on all of that, I find it hard to swallow that I am not "high risk" for cancer in the left breast and am very glad I had my ducks in a row when I asked for the MRI. It said in the notes tha I have two small benign cysts in my left breast in the upper inner quadrant at about 10:00. Said something about "non enhancing lesions"... right there it said repeat MRI in 6 mos.

So there!

Oh, my weight went from 128.9 on 10/26/06 up to 145.2 on 4/25/07 and back down to 138.3 today. Phew....on the decline.

Lynn, have an AWESOME time in Orlando. I like that area because it really all centers on vacation. Like Vegas does in that way. It other places, like Ft. Lauderdale, you need to know the area or seek out the touristy things. In Orlando, it's easy: it's all right there. What do you plan to do down there? I know you may not be able tell me until you return.

Tina, I forgot to mention...I finally watched Sopranos last night...OMG!

I also have to do rads, they wanted me to come Fri but that's the funeral for my BIL, then they wanted to put me off until the 29th but I got it moved up to the 25th. They said it might be a week or more later until my first rad - why would it take so long after the simulation? I think he is planning on 33 but I'll find out for sure at the simulation.

Caya,
It seems that I am copying your symptoms. yesterday I also noticed a few cold sores in my mouth and on my tongue. I am also getting a yeast infection . I think that is caused my the cipro. Geez---. When I went for my taxol/herceptin # 5 today, the oncologist ordered a bottle of Nystatin for my mouth and she told me to get Monistat for the other end. am so tires of complaining to them. On the other hand, my blood counts were decent enough to receive treatment.

Tina,
Good for you for pushing for the MRI. It is unbelievable how we have to be our own advocates. I so not understand why we breast survivors cannot routinely get an MRI. The cost would be small in comparison to a missed recurrence. Insurance companies do not agree with the “preventative approach.” And most oncologists are not willing to fight for us. I do not get it. A friend of mine who was diagnosed 3 years ago and is doing fine now, but nevertheless tells her oncologist that she has pains in her bones. She feels badly about that “over-exaggeration,” but she gets an MRI every year as a result.
I need to go shopping. I have not been in a Mall since I was diagnosed in November. Way too long. I have not had the desire to go clothes shopping. I wanted to wait until after my reconstructed mastectomies, but my blouses seem to be getting too short on the bottom. Time for new tops at least.

Mizsissy,
I will pray for Mena. I have heard that for most people, the tiredness from the radiation is cumulative. You are almost done and you will get your strength back and you will start riding your bike like you were last year. Just one more week- that is great!!!

Lynn,
Have a great time in Florida. You deserve it. You can tell us stories when you get back.
Cindy,
“I've a Chihuahua-do”- I love that story!
Viddie

Hi,
Part II
My problem is her last minute planning. When she signed up for courses this week, most of the classes were filled. Microbiology was the only course that was still open. A & P is full, and she is 7 on the waitlist. She will not know if she gets in until the last minute and she is coming home anyway, even if it is only for one course. She left a very good paying job with insurance only to take one course- that is why I am upset. She cannot get a good job here because the course is smack in the middle of the day 4 days a week. I am also concerned that she has no job to return to when she returns to DC. She does have some money saved, but I still worry. She also needs health insurance when she returns home.

I was so upset, I started going on the web trying to find other state schools outside of our area. She should have done this. I found a community college around an hour away that still has openings in A&P. Two courses make more sense. She can get 100% refund if the A & P class opens up here. Since the summer sessions are in a shorter amount of time, they have 3-4 hour classes 4 days a week, so she could not fit in more than that, especially when they both have labs. When I told her this information, she resented all my efforts. She told me that she did not want to come home if I am going to check her syllabus, bother her about grades or exams, ect. She has a little point- I am a hovering mother, but really---this stuff should have been done a month ago.

She wants me to promise to leave her alone once she comes home. She will be paying for these classes, and at 23, she wants her independence. She needs to borrow our car, live in our house, eat our food, and I cannot say anything about her schooling. I know she has a point, but it will be very hard. She always has been a good student, graduated on the Dean’s List, but she a procrastinator and I still worry. Am I over-reacting? Is she right? It would be great for me to have her around. I love her dearly. I think I need an ativan tonight. I think I will need an ativan for a couple of days until I calm down and until she decides to take the other course an hour away. – Sorry about all this rambling.
Viddie

Mizsissy, I didn't realize you were having heart issues again. I wonder if that is addding to the fatigue. Please baby yourself and give your body time to heal from the rads. I am praying for Mena, and for all of us.

Mary, My heart breaks for your bil's son and wife, and for all of you. A 15 year old boy ... oh dear, he will miss his Dad so much.

Lynne, have a wonderful, well deserved vacation.

Viddie, Oh, adult children! We promised, and delivered, four years at any instate public univ for each of our three. One went on to become a veterinarian, one has just finished his first year of law school. The two that opted for more school (and we are proud of them) did it with loans. We just couldn't fund a future retirement along with grad school. There doesn't seem to be any resentment. But I completely understand your reluctance to have a well loved child home for several months. It does mean more work for you, no question about it, and it means more chaos, just at a time when, if you are like me, you are craving order and serenity. I love having them home for visits (like memorial day, or our son's current 10 day stay between school and an internship). But I barely have the energy to deal with my husband, and don't want to deal with anyone else at night over a longer period. And they are so testy about grades, interference, etc. I completely understand your feelings. It is just too much of a physical and emotional expendure of energy right now. Having said that, you are in a tough spot; how do you tell her no? I am sorry, I sympathize.

I hope everyone has a safe, happy day.

Melia

Mary I am so sorry about your BIL. My sympathies to you and all your family. This is not what you needed now, but of course we do not get to pick....and when it is OK to lose a loved one? On the other hand, I bet you are due for a karma swing the OTHER way....maybe you should buy a lottery ticket.

Viddie-Unfortunately as the parent of SMALL kids not big ones I am not sure what to say. I do understand your feelings, and I agree with what Melia said about a child returning home and bringing chaos when what you need is serenity. I think the part that bothers me is that you were not consulted in the decision, yet she assumes the use of your home and resources. Not that you (or any parent) would not be willing to share what you have, but I think that if help is being requested, a request should be made! I also think that her behavior is a little irresponsible....to give up a good job to go deeper into debt, and THEN to turn down a new job for the same reason. I would probably suggest that she forgo summer classes, and start night school in the FALL so that she can hold a job while taking classes. Also, it is common practice for students to take loans for grad school...I did it, and my post grad education was NOT a financial burden on my family. What a horrible position to be in Viddie...torn between your love and desire to help your daughter and your need to take care of your own very real needs.


In other news...I formally joined the Rads club yesterday when I had my setup and got my little tattoos. OUCH! I think I had a harder time than average because I am still sore from my expansion on Tuesday, and having to lay on my back with my arms over my head for 90 mins was asking a bit much of my poor stretched and sore chest

Today I go for my MRI of my intact breast. I am more than a little scared. My husband keeps thinking I am scared of the MRI procedure, but I think you ladies know better. Cross your fingers for me.

I have been looking at lottery tickets lately but haven't bought any.

I'll be keeping my fingers crossed on the MRI.

I agree night school sounds like a good idea. My brother went to night school for 6 years working full time and graduated magna cum laude.

Hi everyone,
I have a page to go yet catching up from the last day or so, but I know I'll forget the few comments I wanted to make if I wait to answer. First, Mary, my deepest sympathies on your BIL and on the dh friction. It's such a stressful time for you both that issues are bound to crop up and get out of hand; this too shall pass. You have my prayers getting through it.

Caya my supposed UTI symptoms disappeared so I bet it's the atrophy thing.
Hope your fogginess is clearing.

Mizsissy, it's so frustrating not to be able to exercise while you watch your middle parts grow but when the rads are done you can get back at it. My new fat is all going straight to my middle. I can still fit in my old pants size...just... but lots of my old summer tops just look nasty. I've had to go buy a few of the new style that are longer and blouse over your middle.

Yesterday I got too much exercise, I had agreed to videotape the highlights of a Wisconsin attraction called House on the Rock that is full of crazy exhibits like the world's largest carousel, room-size musical automaton displays and more. It takes hours to go through and not all on one level. My son Nate drove me there but when we got through I was still exhausted and still recovering. It's for a Youtube channel run by my B&N book editors and I have to tape 4 places...what was I thinking? Only one left to do however.

I STILL haven't got a radiation oncologist. Thanks to whoever wrote that the safe window is up to 8 weeks, I couldn't find that anywhere and it's been a worry. They just can't find a rads onc in Janesville who is a preferred provider for my insurance. If they don't, I'll have to drive to Kenosha instead which is over an hour compared to 35 minutes for Janesville. What frosts me is that my fam is going to our nephew's wedding in Lincoln NE next weekend without me because my onc had said I'd be in radiation at that time. Now I probably won't and it's too late to make the air arrangements.

One last thing, Viddie my 26-year old son has moved home for the summer after he quit his job in Chicago and discovered he could not survive on his artwork and odd jobs. He goes to Chicago every weekend to tend bar for a caterer but has been very lackadaisical applying for other jobs here or there. His schedule is different from ours and he's on the sloppy side so that's the worst struggle. Otherwise he's great company. The hard thing for his dad and me is that we paid the equivalent of medical school to put him through the elite School of the Art Institute of Chicago and he is a great artist but can't support himself! And we can't afford to help him with grad school as a result either. I just try to have faith that his life is going to work out somehow. And pray that he will mow the lawn before he leaves for Chicago today.
Happy weekend everyone! - Skye