New guy checking in....

spoke · Posted: Wed May 04, 2005 11:01 pm Post subject: New guy checking in....

Hello! I spend many hours on other internet forums, but my beautiful wife was diagnosed with breast cancer about four weeks ago. She needs much more than I'm able to supply (being the Neanderthal that I am), so I'm stumbling around right now. First some background.

Karen was a cancer nurse at MD Anderson Hospital in Houston for nearly fourteen years. She's an Oncology Nurse Clinician, and specialized in adult leukemia patients and bone marrow transplants. When we moved to North Texas nearly ten years ago, we were able to fulfill a part of our family plan, which was for her to be a stay-at-home Mom. She did that for eight years for our three children, and just about a year and a half ago went back to nursing part time, this time as a hospice nurse. In January, she went to work full time.

She's the most godly woman I've ever known and has approached nursing and motherhood in the same fashion: as separate callings from God, and has always committed 110% to each, comitting herself to please Him in each endeavor. If there was ever a woman designed to be a nurse and a mother, my wife is that woman. Her children and patients receive all she has to give without ceasing, but now it's her turn to be a patient.

This part of our life is made more difficult by the fact that I've been unemployed for six months. When she was offered the chance to work full time in January, we decided she should accept, since health & medical benefits came with the job. Good move on our part! Very Happy

About five weeks ago on a Saturday, she felt a lump while taking a shower. On Monday, she was at the doctor, and then we were off to the races. About ten days later, she had a lumpectomy, and two days ago (on Monday), she began her first course of chemotherapy. Monday was okay, Tuesday not bad, today was brutal! Rough day, and most of it spent in bed. She needs to go to work to keep the benefits that will assure her of treatment to beat the cancer, but it's going to be tough. If there was ever a year when I'd like her to be that stay-at-home Mom, this is it. Until I get a job however, that can't happen, and maybe not even then.

I'll be checking in here as often as possible for any insight you folks can provide, and hopefully some encouragement too!
_________________
She should never have looked at me
If she meant I should not love her!
Sir Robert Browning

RachelEsther · Posted: Thu May 05, 2005 2:57 am Post subject: Re: New guy checking in....

Dear Spoke,

Please let us know what sort of chemo regime she is on, as they differ somewhat, and our advice can be more precise. What chemicals, how often, how many treatments, that sort of stuff.

I had dose dense chemo, 4 Adriamyacin/Cytoxin, then 4 Taxol, every 2 weeks. I am going to assume that she is starting with AC, as that is the most common.

I found that I felt great on the day of chemo (Friday), the day after, and for most of the day after that (Sunday). On Sunday evening, I started to slow down, and Mondays were always pretty much lost days - very tired and feeling off. Usually I felt ok on Tuesday and then progressively better as the days went on. I had neupogen shots starting on Day 3 (Monday) for a week, and I think they added to my fatigue. Anyway, she should be starting to feel better soon. Some women do great like me, others do less well.

If she is nauseated, she needs to talk to her onc and get different meds. I took Emend and either Anzamet or Kytril and never had a minute of nausea. She may be constipated which will make her feel bad also, Sennekot helps that.

Anyway, lots of women don't miss a day of work, some miss one or two every cycle, some cannot move and are out on disability. Mine was not cumulative, so don't expect that necessarily.

Also, the first chemo is filled with terror, which can wear you out. You are just always on the lookout for some dreaded side effect, and the dread can ruin your day. After the first, when you sort of know what to expect, that part of it should go away.

Probably, she will be able to continue working, taking one or two days off here and there. If her job is extremely physical, she may want to consider a temporary switch to a position that does not require so much activity - it seems to me that nurses do alot of walking and lifting. I don't know if that's possible, but it's worth a shot.

I really want to emphasize that I believe that alot of the chemo "experience" is shaped by expectation and attitude. I was surrounded by women who worked through chemo and did very well, and so I knew that it was not only possible, but probable. Your head can do funny things to your body. So, expect the best, but be prepared for the worst.

I do hope she starts to feel better tomorrow! Or the day after! Please do let us know.
_________________
Rachel
Age 50 at diagnosis, Stage IIIA
IDC grade 1, DCIS grade 2
LB Mastectomy, Expander Recon 3/3/2004
Dose Dense Chemo completed 07/01/04
Radiation completed 09/02/04
Silicone Implant 11/22/04, removed 7/05 due to infection (dental cleaning), replaced 12/05. Reduction RB for symmetry 04/06
Tamoxifen 10/04-10/06, Arimidex 10/06 on

AlaskaAngel · Posted: Thu May 05, 2005 10:51 am Post subject: Treatment

Welcome.

I'm self-employed so there wasn't much of a choice for me, either. I did set up a substitute to do my work for the very first chemo as I am chemophobic to begin with, but as fate would have it, she was medivac'd out unexpectedly with a very sick baby to Seattle the night before my first chemo.

I know what nursing jobs are like. Your wife has lots of good things going for her -- she isn't as lost as many women are in trying to understand the basics about chemo or breast cancer; she has a partner who is actively seeking to help her; and hospice work is physically somewhat gentler than regular floor nursing -- although it is hard to say whether it is the best thing right now for her mentally.

The most helpful thing for me was the people who were "there" when I needed someone. My husband has been wonderful. He is in tune with when I am overwhelmed by anything and knows when to step in and provide guidance or simple practical "doing the dishes, taking the dog to the vet" help. He doesn't keep track of our paperwork so at one point when we both were in the Lower 48 while I went through rads, by the time we got back it was hard to handle that, but I just did what I could every day and gradually got things back together. My sister was terrific, too.

Getting a job will probably help you both. You didn't say what kind of work you do?

A.A.

sgishelly · Posted: Thu May 05, 2005 12:16 pm Post subject: Re: New guy checking in....

I agree with Rachel and AA. If your wife is having nausea...call the doctor. No one told me that and I suffered for 2 days thinking this was what was supposed to happen. But they have many wonderful anti-nausea meds and they just need to find what works for your wife. For me, Decadron and Kytril worked like a charm. I had AC first and the biggest problem I had, other than the initial nausea, was fatigue. It usually started on day 2 after chemo and lasted a few days. I could function normally, it just took all my energy to do so. Other than that, food tasted funny. So far...with Taxol, I've had no problem at all.

I know that all this is hard on you and I commend you for standing behind your wife. You will be the one that sees how bad she feels. Just be there....when she needs to cry, be there...when she needs to yell and curse, be there...when she needs a hug, be there. She will need you more than you realize.

Blessings to you and your wife.
_________________
Shelly
Dx Nov 1, 2004 at 40 y/o
Right MRM, Left Simple Mast. - 12/9/04
Stage 2A IDC -
Primary tumor 1cm
3+ / 14 nodes, ER/PR+, HER2-
34 rads - finished 5/25
chemo - AC and Taxol FINISHED 7/6/05
beginning reconstruction 2/06
brain mets 4/06 - now stage 4

Muttsmom · Posted: Thu May 05, 2005 6:26 pm Post subject: Re: New guy checking in....

Hi,
Your wife definately sounds like the kind of nurse I'd want taking care of me. Smile

You can see my bio at the bottom, so I won't repeat what you can read. I will say one thing. If she's unable to work, or they won't let her work part time, she can draw disability while she's going through treatment. Because of abuse, a week before my biopsy, I was also starting with a nasty divorce (not my idea of it being nasty) at the same time as my mastectomy and treatment. Since I was getting no help from him (that's another story in itself) I had to rely on my elderly parents. I finally went and applied for food stamps, but at that time hated doing it because so many abuse the system. I finally let myself realize that I needed and deserved the help and I wasn't going to be labeled anything for getting food stamps. Not only can ya'll apply for them since you aren't working right now, she can apply for short term disablity through her job or she can contact the social worker if she's going to a cancer institute vs an individual onco who doesn't have a social worker and they can tell ya'll what you are eligable for and will help you do all the paperwork needed. I lived an hour each way from where I went for treatment and I was able to get gas cards to cover that expense. If she feels like working that's great, but if she doesn't, she doesn't need to wear herself down and overdue it.
I hope we've helped answer some of your questions.
As much as I hated hearing I had this disease and an advanced stage on top of it, I really think in a lot of ways, it's harder on the care giver/loved ones then the patient, because you don't know what to do. For me, I didn't want the disease or treatment to take away my independence from doing what I was use to doing. I would tell your wife that you want to do anything she needs you to do, but you don't know what those things are and for her to tell you. That way she has no doubt (not that she does anyway) that she can ask for help, but that you won't try and stop her for doing things she feels up to. I had days that I felt great and mowed the yard (riding lawnmower) played with the dogs, cleaned house etc. Other days, I just wanted to lay on the couch and not move. I know she's taken care of cancer patients, so it may not be the same for her as us, but then again being the patient is different then the caregiver. It's an emotional roller coaster and she may be moody at times or be angry at the disease, so anything she says that is out of character for her, don't take it personal. I had a friend who wanted to take a hot bath and have a "pitty party" alone. Her husband, trying to be there for her, went into the bathroom and asked if she needed anything. She threw a bar of soap at him, then he realized she needed to be alone..... lol We can do and say some goofy things that's for sure.
You're both going to great through this and I"m so glad she has a loving husband that has reached out to us so you'll know what to expect and what to do to help her........ She's lucky to have you as I'm sure you're lucky to have her.
K, shutting up now. As you can tell I'm the blabber mouth of the board and I'm also the President of the Whimp Club of America Smile

_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

spoke · Posted: Sat May 07, 2005 4:22 pm Post subject: Re: New guy checking in....

Well, she got through the first week of chemo. It was given on Monday (which was ok), Tuesday was not bad, Wednesday was brutal, and Thursday was worse. Friday, she worked all day seeing patients (as a Hospice Nurse). It was a tough week, but it's finally begun.

She said the nausea meds were working alright today, so we went to see one of the kid's softball games. Apparently, as long as she keeps eating a little here and there, there's some relief.

Thanks for taking the time to post all your replies and great info. And AlaskaAngel, you asked me what line of work I'm in. I've been in financial services in one capacity or another for nearly 25 years. During the 80's as a stockbroker, and for the past 11 years as a wholesaler of financial products like mutual funds and annuities. It's kind of unlikely that I'll be wholesaling again, unless the job is a real good fit for our current lifestyle. For the past few years I've traveled quite a bit and I'd like to avoid that now. OTOH, having no income and no benefits doesn't add much to our quality of life either, so who can say? Confused

_________________
She should never have looked at me
If she meant I should not love her!
Sir Robert Browning

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