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cloud_swift

Difficult to keep 'knockers up'

18 years ago

Okay, I need a bit of a pep talk. Nothing has gotten worse on the medical front - the incisions are healing pretty well and I have pretty much full range of motion back, but I'm starting to understand what this all entails. It makes me want to whine and I hate whining!

I feel like I'm pretty recovered from the lumpectomy and sentinel node biopsy, but I must not be up to full speed. For the first time in the nearly 40 years that I have been getting ready for Yom Kippur I found that my timing was off and I had trouble getting dinner ready and finishing what I was making for breakfast in time. I had to cut out some things I had planned. That was my first low point.

And I'm fine during the day but I get tired early because what is minor discomfort during the day still makes it hard to sleep well at night. So it is hard to prepare ahead of time.

Talking with the oncologist, we decided that I would do chemo. It is a quite effective recently approved set of drugs that have less short term side effects and little risk of long term side effect problems. But it still means a "procedure" - don't you just love that euphemism for a small operation - to put a port in and lots of appointments and dr appointments for monitoring during the course of chemo plus the chemo visits themselves. My calendar has an alarming number of items on it already.

When I was getting the radiation consult, the doctor asked the routine question about what medications I'm taking. I listed then and he said what I about X. I said I didn't know anything about that medication. Then he said there was a prescription for X waiting for me at the pharmacy. He looked at his screen again and said there were a bunch of prescriptions waiting for me - I guess they are the ones to control chemo symptoms and I'll get told about them when I go in for the pre-chemo visit.

And after chemo comes radiation. So this not having energy in the evening is going to last for months. I laid it all out on our calendar and I'll be in the middle of radiation during Passover. I really love Passover and all the special foods I make then. It is going to have to be very cut back this coming year I think. That's what made me really lose it and cry.

And I felt fine - I just went in for a routine mammogram and that got me in to surgery and all this stuff - drugs, more drugs to counter the side effects of the drugs, tests, appointments.

Comments (20)

  • 18 years ago

    I am so sorry you have all of this to deal with. Try and look past the next few months and see that life will be back to normal once it's all over. I know it's tough.

    Can some of your family give you a hand preparing some of the components of your meal(s)? It might be kind of fun to see them making your recipes to share for the holiday.

    Hang in there. Yep, it may get worse before it gets bettter, but it will get better.

    Linda

  • 18 years ago

    Sent you an email.

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  • 18 years ago

    You have been through so much. You can whine here all day. We don't care about whining, we just want you to to feel better. We will all have different ideas to help you with what you are going through. Lot's of advice here on this forum. Believe me when I tell you that your body and mind reacts to the added stress of what is happening to you.

    Please ask for some help in the kitchen to make it through your holidays. Everyone will understand. I've not been through what you are going through but I have been sick during one of the holiday meals. Each member of my family prepared something and my DH prepared the main course. It's just an idea for you to think about.

    I would check with the doc that prescribed the drugs and see when you are supposed to start taking them.

    Take care of yourself first!

  • 18 years ago

    Cloudy, hon.....
    Look at me...10 years past....
    It's so worth it....
    Be prepared, because it will be early next summer before you feel like yourself....just get through it....
    Make up your mind that this year things will be different, because you are doing cancer treatment.....and tell people that.
    Do all you can to keep things as "normal" as possible, but you simply won't be able to do it all...this year....but next year and for many years after you will be able to...
    Not sure why you are having a port...I just got the chemo infused through a vein in my hand.
    Will you lose your hair? If so I recommend a couple of fun wigs....don't be sucked in by the people who want to talk you into a $350 real hair wig...but go for the $100 sythentic ones....and get a couple....after all think what you are saving on hair cuts, shampoo etc!

    Well I remember the oncologist visit where he recommended chemo and raidtion....and I was hyperventilating and shaking, and he said in 2 weeks you will lose your hair in 2 weeks.....and I shook more...
    Then I heard squeals from the waiting room! "Cathy! Is that you! Wow you look fabulous!"....and there was a young woman, 34 she said....with long auburn hair. I asked...is that a wig and she said it was and lifted a corner to show me....she said she had 2 and this was her 3rd. Explained where to buy and for only about $100, and I knew I would be fine. And so will you!
    Whine when you need to....but remember to ask for help....for just this year, not for next year...because you are doing everything to insure there WILL be a next year!
    Linda c

  • 18 years ago

    Cloud, I can't speak from experience, but I want you to know I don't mind you whining at all, and I think about you often. Hang in there.

    Sally

  • 18 years ago

    Whine away. Though I never have had your experience I did have an injury that left me unable to walk for months and exhausted for longer. Feeling drained all the time zaps the spirit when you are used to be a ball of fire and doing it all. Ask for help. Cut back on some frills if need be. Remember, it is temporary.

    Hugs.

  • 18 years ago

    I am so sorry. This really sucks. Make your favorite passover foods now, or when you feel up to it, and enjoy them whenever. Freeze some, save some, eat some. I am half jewish and always celebrate Passover, but I say celebrating life is more important. (after all, that is a big part of the passover message anyway). Passover is a date. Celebrate it early if you feel up to it.
    Rambling, but heartfelt.
    Hang in there.
    Jo

  • 18 years ago

    The responses to this thread helped cheer me up - I'm feeling somewhat better about things today.
    Jessy, got your - it helped a lot too. Yes, I should remember that letting people help gives them an opportunity for a mitzvah.

    My DIL reminded me that she will be off work on maternity leave during Passover so she can help too - but the new grand baby will be about 2 months old then and our granddaughter will be 2 years old so I think her hands may be pretty full too.

    Partly I'm sad because I enjoy cooking and at Pesach it is my pre-holiday form of meditation. :^) But I guess I'll just have to plan on cutting back this year.

    Linda, I had a choice about the port. One of the chemo drugs that I'm getting is hard on veins when it is full strength, so a port that dumps the drug into a major vein where it gets diluted more quickly should make chemo more comfortable. Also, the chemo plan is for me to take Herceptin (a drug that has fewer side effects because it targets a specific cancer cell feature) for a year. And given that the chemo sessions can be a few hours (the first one is even longer - about 6 hours), I think it will be more comfortable to have the IV going to a port so I can use my hands for reading, writing and such without an IV in the hand or arm. Some people start out using veins and have problems so they get a port later. Because of all that I decided to get the port even though I'm not looking forward to the procedure - with another incision to heal.

    I'm told that I will lose my hair - probably about two weeks after I start chemo. Of all the side effects, that seems to be the biggest deal to some people, but I don't particularly mind. I'm sort of wondering what I'll look like bald. Emma Thompson looked pretty striking that way in Wit - not that I'm any Emma Thompson.

    I've heard that the wigs can be hot and scratchy and I've never been able to wear anything scratchy. (Just a princess like "The Princess and the Pea.") It seems like more than half the people on the breastcancer.org forums say that they got wigs but almost never use them.

    I'm thinking I'll do hats and scarves - I've been looking at some on the TLC (American Cancer Society) website. I think I'll stop by the ACS office that is near my doctor's office on the way home from an appointment. I hear that they usually have some wigs, hats and scarves to give away - I don't need that but I thought that I could try some on to check which size I need and which ones look good on me before I order on-line.

    Here is a link that might be useful: I think this hat is cute.

  • 18 years ago

    Thank heavens you went in for the routine mammogram! Look at Elizabeth Edwards, who put off hers. You're so smart, and while the process of all this is draining, your results will be worth it. Taking care of yourself is your first priority.

    I've never met anyone who actually liked her wig. Hats and scarves seem much more popular.

    Here is a link that might be useful: P J Hamel

  • 18 years ago

    You might be surprised at how easy the chemo really is....I really had no discomfort from the chemo....although I know it did a number on my veins, because when they would try to find one to draw blood, it was not always easy.
    Will that first round be taxol..? I suspect so by the long time to infuse.
    I didn't find a wig hot at all, quite the opposite....my head froze...all the wigs are vented and sewn on a very find mesh. It was very important to me to do "business as usual" I didn't want to look different, even though I felt different. I didn't want to constantly remind people that I was a cancer patient. I had no eyebrows, but I drew them on. I had no lashes, but I used eyeliner. I felt better not to be reminded that I was "sick" every time I passed a mirror, nor to see it in the faces of others I met.
    I wore a wig all the time, even at home with no one around. Believe me the wig is a lot less uncomfortable then my itchy eyes are right now because of the ragweed.
    Here's a picture of me on the day after my 7th chemo treatment and the next to the last one.


    All the "counselors", those programs that advocate "look good feel good" are not wrong, but they are a bit agressive! LOL! One woman tried to sell me paste on fake eyebrows...LOL! I said just give me a light brown pencil.
    And the reason you don't know of anyoen who was comfortable in a wig is because you didn't know they were wearing a wig.
    But you'll figure it out....

  • 18 years ago

    Cloud Swift. No words of wisdom from me, but I think you'll do just fine. Just think about all the wonderful holidays you'll have ahead because of the effective treatments available today.

    When my sister was undergoing chemo, I couldn't tell when she wearing a wig and when it was her real hair.

  • 18 years ago

    You have been given lots of good advice and encouragement and I can only echo my sentiments as I have not had to deal with what you are going through. I can remember you in my prayers and pray for strength to get you through this time and I will do that.

    I will add that a lady in our small town lost her hair to chemo and she wore a baseball cap with the biggest silk flower attached to it to match her outfit that day. She has always been a very trendy dresser and I think the cap looks cute. That hats you linked to are cut also.

  • 18 years ago

    CS sweetheart I know how hard this is, it's OK to get tired and ask for help. BIG HUG to you from PA.
    Laurie R.

  • 18 years ago

    I wish I could crawl throught he DSL line and give you a big hug!

    this year, let the kids take the holidays and you sit back and partake. You raised them right, so it will be ok. So will be the treatments.

    Come here and whine, moan and you will find comfort from us. I know, I have.

    BIG HUGS,
    Peppi

  • 18 years ago

    Linda, Not Taxol, but a related drug, Taxotere. My cocktail is Taxotere, Carboplatin and Herceptin. 6 cycles of that combination and then the Herceptin alone for the rest of the year. It is a pretty new combination but it is suppose to be quite effective against my variety of breast cancer while having little or no long term side effects and relatively easy short term ones.

    I'm trying to decide whether to go to one of the Look Good Feel Good sessions. I could use some help learning to tie scarves, but I'm kind of afraid of them pushing the rest of their ideas. I definitely wouldn't glue on eyelashes. I've had some skin allergies to adhesives and I wouldn't want to find that out with my eye lids.

    On wigs - I'm going by what I read on the breastcancer.org forums so being able to tell whether they are wearing a wig isn't an issue. I guess we all have our own ways of coping. Your look very good in that picture.

    I'm not sure what I'll do about eye brows if I lose them, I'm a klutz with make-up. I tried it a few times when I was young but never got into using it. As my career got into full swing I had neither the time, nor inclination for it and my DH likes the natural look.

  • 18 years ago

    CS, I don't have any experience either, so I can't tell you how good or bad it will be. I can tell you that my Aunt Ronni had a double mastectomy years ago, lost her hair and it all came back curly, it's cute as heck. The same thing happened to a co-worker of mine, she has the most wonderful curly hair now.

    As for Passover, take the help you can get and spend the rest of the time just enjoying that new Grandbaby. After all, the holidays come every year and you want to be around to enjoy many more, so enjoy this one in whatever way you can, and get back to "business as usual" next year. That is, if you don't enjoy playing with the baby so much you decide to make that your yearly tradition, LOL.

    Knockers up, CS. Way, way up, you can whine here as much as you like, you know we'll prop you up any way we can, and I'm sending all the good, strong, healthy thoughts and prayers I can muster up.

    Oh, and I want to see pictures of that baby!!!

    Annie

  • 18 years ago

    I can't add to what solid advice you've gotten, but to say that you will probably have lots of highs and lows in the months to come. Try to roll with the wave, and take care of yourself when you are low, and take advantage of the good days. Just learn to recognize the difference, and don't push yourself on the low days.

    As for Passover, make the most of your support system people, and think ahead to the next year, when all this is behind you. Don't dwell on what you can't do, please.

    And many many hugs from here.

    Helene

  • 18 years ago

    I'm feeling much better now. I guess I just needed some support, perspective and time to get my head around the situation.

    I know that I am really fortunate. It was caught early. I have a great employer who provides a very good health plan. Kaiser has been very responsive - I'm generally getting appointments quickly when I need them and treatment is progressing as fast as my body will allow. I'm in so much better shape than many others facing this disease.

    Ideefixe, a lot of the credit for me getting the mammogram on time goes to Kaiser. By my nature, I might be as bad as Elizabeth Edwards at procrastinating about this - there is so much else to be done. But several years ago Kaiser made mammograms walk-in so I don't need to get an appointment to get one. And they really push the screening - in April they sent a letter saying that I should come in for my "yearly" mammogram even though I had had my prior one in August - apparently they don't care if you come in a few months early as long as you get screened. Then every few weeks I would get a reminder letter. And they also put the dates for any regular things like screening and vaccines on the bottom of the sheet that one gets when checks in for an appointment.

    So when August rolled around and I was near the facility, I decided I'd better drop-in and get the mammogram to stop the nagging reminders.

  • 18 years ago

    Boy, do I know how you feel. Helene's right about the ups and downs. Believe me, life will get back to normal. Maybe better than normal. I take better care of myself...lower stress (well, except for my latest mammo results seem to be lost, lol), healthier diet, a greater appreciation for life (corny but true). And I count my blessings every day.

    Early detection....yesss!

  • 18 years ago

    awww - support it is, then. Don't be afraid to lean on us when you need to , OK?

    I know it was almost a year after my melanoma diagnosis that I was having lots of trouble coping...I cried EVERY single night in the dark while rocking Will to sleep...I was obsessed with packing the Christmas decorations so carefully and labeling well, since I was convinced that they'd be unpacking them without me the next year...I reached out and talked with friends and sought support and guess what - that was almost 9 years ago. And I still have to get the decorations out by myself - LOL!

    There will be lots of emotional ups and downs and you will definitel have physical ones as well - just don't be afraid to cry out when you need some comforting and supportive words...

    Stacy