August 2013 Chemo Sisters

If any of you get your care at Saint Barnabas Medical Center in Livingston, NJ, there is a Look Good Feel Better seminar/class on September 27th.  If you haven't done so already, call to register. 

I look forward to seeing you there!

....or Howie Mandel. 

Hey all, I don't participate as often as I visit.  I read the boards but then go on about my life.  But today is a weepy day, as was yesterday.  This only happens these days when I'm physically weakened.  The last time it happened was after the surgery but before chemo, I was having some post op pain, not enough to medicate but enough to make me a bit weak, and the tears wouldn't stop.

Two nights ago we went to the county fair to hear a friend play (guitar).  It was my first night out in months and it was great, the night was warm, the fair not as cheesy as I remember or was that because it wasn't 100 degrees in the shade as usual?  Anyway, I way overdid as far as just walking around and just looking at stuff.  It plumb wore me out.  I felt wiped yesterday and got into a crying jag over my perceived abandonment of most of my local friends.  I only have one regular visitor and that's gonna end as soon as the Project Runway Season Finale.

From my understanding this is a normal occurence and I'm wondering if anyone else is struggling with the same thing.  How do you handle it?  I don't know how to treat these people when I next run into them, my gut tells me to shun them as they have shunned me.  But I thought I was somewhat liked.  It's a hard thing to go through, this cancer stuff, but to have the people you thought you could count on vanish - it's so cruel.

Beeve:



Hugs, hugs, hugs to you. I am sorry you feel so bad! Just as my temper and hyper behavior can be steroid-induced SEs, so can down/crying spells. Not all at trying to minimize your feelings; it's so very hard coping with all we have to face.



I have found that people can be well meaning but forgetful; some can be well meaning but thoughtless and some are too involved in their own issues to be there. Rarely do people act this way intentionally, some simply are not capable of being supportive for whatever reason. Their problem; not yours.



Breathe deeply, people still love you; and many people care. I do! There may be some people who hold back because they don't know what to do and want to be there but don't want to intrude. What I do is call those people myself and ask to see them. Arrange lunch or coffee or ask them to go with you to an appt.



If anyone asks you, 'Do you need help' or 'What can I do for you', don't hesitate to say something concrete like getting you groceries, bringing a meal, driving you somewhere. Some people have asked me: I said nothing now but I will definitely need people to drive me to radiation therapy so I WILL call you.



Take care and PM me anytime.



Sharonanne: I had to go to two memorial services right after my first tx. I was good, both had buffets. I made sure to get to the food as soon as it was out. I stayed away from fresh fruit and salad and anything with seafood. I gave myself permission to splurge on some desserts.



I was fine. Stay away from anyone obviously sneezy and be sure to bring hand sanitizer and wash your hands frequently. And have fun!

Hockeymommy: i ended up with pimples all over my chest and back and they figured it was an allergic reaction to the antibiotic i was on, its worth mentioning. When they changed my meds it went away

Love, Rayna

Cougar: You are so inspiring, you're amazing, going thru this while pregnant. I didnt realize they could give you chemo while pregnant, it must be okay for the baby. When is your due date.

Love, Rayna

rajnay + beeve, sometimes people don't know what we want or expect from them so they just stay away.  If you want or need something from someone, ask them. 

A few of my cousins know that I had a bi-lateral mastectomy (and possibly know about chemo) but respect my privacy + only ask how I'm doing.  To that I respond, I'm well.

I don't see myself as sick + don't want sympathy or special treatment from anyone.

I must be very ignorant when it comes to my health, though . . . 

When I feel bad I'm in the house and probably in the bed.  Otherwise, I go about my life.  I go to work, to church, to bible study, to funerals, grocery shopping, walk almost daily, sell my products @ events, etc.  My blood counts have always been fine but I've never thought once about not doing something, especially when I felt OK.  I believe taking the Neulasta shot takes care of my WBC so I don't worry about them.  I take my vitamins, cook in cast iron pots (for iron), drink plenty water, try to steer clear of coughs + sneezes, anoint myself + take communion daily, and keep it moving.

My thought process might not be correct but so far it seems to be working.

I hope we find the right combination of thoughts, words + deeds that put us on or keep us on the path of health  + wellness.

BE Well!

Hey, FMGD, sounds good! I'll take my two greyhounds along and y'all will be with me in spirit.

Beeve...I am glad to know I am not the only one who has those "weepy" moments! I moved 45 miles away from where I had lived for 5+ yrs and then 2 months later I was diagnosed. I can relate to feeling lonely and left behind. But then all at once I will get texts and fb messages from a bunch of friends and I know they must of all been talking about me. So at times it may seem you are forgotten but I am sure people in your life do care and sometimes just "forget" that you maybe needing support, not only when you just find out you have cancer, but continuing thru out treatment. Oddly enough one of the best persons who has been checking in on me is someone who I wasn't very close to me, she was always rather cliquish. Some people are really good with steping up and helping out when one is ill and others aren't.

I have a question. I hear you all saying we need to watch out eating raw fruits and veggies when they can't be peeled. Is that the whole time we are on chemo? I am in my week 3 (the week before I start chemo again) and my blood levels all came back normal this week. I figured I could eat some grapes if I washed them well and since my immune system was normal I thought that it would be ok. Was that a no/no? I just don't want to do something that could put me at risk or delay my chemo.

I'm not the only one left on here with hair. We're holding onto it as long as we can. My  head is itching fiercly. I think that is what woke me up this morning. I'm in day 13, so it won't be long.

Sharon - I'm glad that everything went well at the reunion! My doc told me that if I'm feeling fine, then just live life. I should probably pay more attention to what I eat (I have stopped eating sushi, something interestingly enough I didn't give up during this pregnancy) but so far I have been feeling fine despite some of the not-so-good choices I've chowed along the way. Have fun at your next event!



Beeve - even though I've made it known to my friends that I'm living life as normal, I know some of them have made the assumption that I'm living in a locked room and want my space. So perhaps some of the friends who have gone MIA have done so because they think you want it that way? You're right though, if you find that they aren't supportive when you need them to be, perhaps this is a lesson in determining who your true friendships are.



Naan/Julie - I'm expecting another boy (my first is a 2.5 yr old boy)! I'm happy with the news because my first is a bruiser and I'd worry too much if I had a girl. Plus I'm cheap and can recycle all the old clothes. I'm in the Bay Area, but I grew up (and my family is still in) in Orange County in SoCal so after baby is born and we go down to visit I can certainly make a pit stop in LA to say hello! . You are all welcome to be virtual godmothers!



Reyna - yes, chemo can be given while pregnant in the second or third trimester, although not ideal of course. In my case the tumor was growing so fast they needed to do it prior to delivery. They say the placenta is a great shield - often babies will be born with full heads of hair even if momma has none! There aren't any studies that show increased birth defects, although there is usually reduced birth weight and earlier labor. My docs want to induce me early once they feel he has grown well enough so I can resume chemo quickly. So I probably have one more round of AC before I give my body a break to prepare for baby delivery.



Thanks all for your thoughts and prayers! We are still finalizing a name, but one thought is to name him Noah since he will have gone through quite a storm to get here!!

Hi Ladies, finally back on track. The laptop got resurrected somehow so I can post more easily and keep up. Had my first round of A/C yesterday. Must admit I was quite anxious and they gave me a low dose of Ativan to help (thats the problem when you are a nurse, especially a former oncology nurse, you know too much!). So far so good, just very tired. Although I did have some pretty serious palpitatons this morning....wondering if my potassium was low from overhydration yesterday (I think it has happened before). So I took my beta blocker and ate a banana and milk for breakfast. Seemed to help. I probably should have called the doc on call but really did not want to go to the ER. And it resolved.

For the questions about buffets, etc. I have been reading up on it because we are involved with a couple of big parties coming up at our marina. As long as the food is kept at a safe temperature you should be okay. But avoid any raw fruits and veggies, and salad bars too. That goes for restaurants too. We will be serving a large tossed salad made from bagged lettuce, I will probably put my portion away at the start and wash it separately (I will likely be neutropenic that weekend). They say to avoid potlucks because you don't know how the food has been prepared and/or held. My oncologist says just use caution and common sense, and most of all practise good handwashing.

Good luck to everyoe!

Martha

hello ladies...wanted to say hi.  still very tired and weepy.  hope you all have a blessed day tomorrow.

Is everyone taking vitamins?  My MO suggested that I continue with a multivitamin, vitamin d, calcium, iron, acidophilus.  Iron helps with fatigue. 

Today is the 9th day post 2nd infusion + I feel good.  I took my granddaughter to buy new school shoes.

I started cooking my kale + peeling my cucumbers; however, I still add raw spinach to my salad, eat raw blueberries + strawberries.  I'm on the other end of the spectrum . . . I don't consider the consequences of raw food enough.

I haven't had any "weepy" moments + speak to my family on the phone more now than ever before but they don't stop by or drop off food.  Sometimes I wish they would but we're keeping things "normal" I guess.  If I ever need anything they'd be there in a heart beat.  Maybe I don't feel neglected because my daughter + granddaughter are with me.

For my birthday my brother + sister-in-law gave me a beautiful breast cancer bracelet.  My brother asked if I would wear it.  I said, yes but not now. He asked why and I said, I don't want anyone to know but when I come out, I will wear it.  He said OK.  I hope I handled it the right way, but they obviously don't know me.  Who needs a reminder of what they're going through on their birthday???

Anyhoo, it was a gift + I love gifts on my birthday!!!

I ended up at the ER last night.  When I thought about what chemo would do to me and the complications from it, I never expected my first ER visit would be because of a headache!  I have had this headache off & on for three days, but by Friday afternoon it was unbearable.  I tried resting and even gave my pain meds (from port surgery) a try, and nothing would touch it.  I was in tears by 5pm and asked hubby to call the doctor.  Of course it was after 5 on a Friday, so we had to wait for a call back.  He told us to go to the ER and get a migraine shot & check my WBC count.  Had to wait about an hour to get in a room, and then they wouldn't give me any meds until they did a CT scan.  Sigh.  By the time I finally got some pain meds & something for the nausea it was after 9pm.  Needless to say I was exhausted and it knocked me right out!  Luckily I didn't have a fever, because my WBC was only 800 and if I'd had a temp they would have admitted me.  Ugh.  My WBC count was 3400 on Wednesday, so that just goes to show how quickly they drop!

I woke up at 6am today with my headache again, but I've been able to keep it at bay with OTC meds.  I'm definitely feeling puny, though, which sucks since I was pretty good all week and I have my next treatment Thursday.  I'm going to ask if I can get my labs done Wednesday, since we have to buy 100 lbs of dry ice for my cold caps, and I don't want to go through that if my counts aren't good enough to have my infusion.