Cancer Survivor Mama - Page 2

[prairiemommy]

Thanks everyone. It is hard and it sucks but there is no way around but through, right?

I seem to be getting every side effect in the book too, which is unpleasant. This Friday will be my second chemo, out of 6. That is, if I pass the blood tests and if this pesky cough doesn't turn into a cold or that my picc line doesn't turn out to be infected. (I've had a bad day)

I reacted much stronger than they anticipated to the first round. It didn't help that they prescribed domperidone as an anti-nausea drug (along with Zofran) but I of course couldn't take it, after having weaned literally the night before. So I only had Zofran and Gravol to use. It took me just over a week to fully recover. They said if it gets worse than that, they will have to spread out the treatments more than every 3 weeks, which would suck because I just want it over with.

Sorry for coming and complaining in a survivor thread but it's just nice to know that there are mothers out there who understand. Thank you though, for the support.

[oiseau]

double post oops

[oiseau]

Originally Posted by prairiemommy

Thanks everyone. It is hard and it sucks but there is no way around but through, right?

I seem to be getting every side effect in the book too, which is unpleasant. This Friday will be my second chemo, out of 6. That is, if I pass the blood tests and if this pesky cough doesn't turn into a cold or that my picc line doesn't turn out to be infected. (I've had a bad day)

I reacted much stronger than they anticipated to the first round. It didn't help that they prescribed domperidone as an anti-nausea drug (along with Zofran) but I of course couldn't take it, after having weaned literally the night before. So I only had Zofran and Gravol to use. It took me just over a week to fully recover. They said if it gets worse than that, they will have to spread out the treatments more than every 3 weeks, which would suck because I just want it over with.

Sorry for coming and complaining in a survivor thread but it's just nice to know that there are mothers out there who understand. Thank you though, for the support.

I for one don't mind at all if you complain here!! Cancer sucks and sometimes you just need to get all that complaining out! I always felt like I had to put on a tough face for my vary worried parents and friends and sometimes I just needed to vent about how crappy I felt or how I really was upset about my hair coming out or whatever. Hang in there!!

Abomgardner- That lotion really saved my life! My armpits were burnt totally raw and I got some type of mystery illness (I think it was just my body dealing with the burns) right after I finished the radiation that caused an awful fever and sweats, so the sweat was stinging the burns. Every other cream/lotion/ointment just made the burning so much worse, but the tortuga healed it up in about 3 days. It sucked, but on the bright side, my armpits don't have smelly sweat anymore, even 6 mo. out from treatment! (Sadly, the hair did grow back!)

[Letitia]

Prairiemommy, I'm sorry it's been rough. I had a tough first cycle - a lot of nausea and vomiting, and a few days in the hospital with a neutropenic fever (UTI, never had one of those before in my life, suspect it was from the diarrhea). I did stay on schedule with the chemo, although I was still on antibiotics for the second infusion.

I really tried to look at that first cycle as a learning experience. I wished afterward that I had talked with the clinic about how much nausea I was having earlier than I did because they were able to add a medication. I ended up using 4 prescriptions and ginger capsules. I had to keep track of them on paper because I could never remember for sure when I'd taken what. The thing I did not have to use after that first cycle, but was just an out-of-the-blue discovery that got me through it, was my partner or mother rubbing my upper back or head. Lightly, not a massage, and I have never in my life wanted to be touched while I was vomiting before.

I also figured out that it was worse if I went a while without eating so I put myself on an every 2 hour schedule, after the first night or so after an infusion when I was too out of it to eat at all. Small amounts of mostly bland, easy stuff, but really I didn't pay strict attention to the clinic's suggestions - I ate what I felt I could put in my mouth at the time. I only avoided acidic foods, because they stung. Nothing specific that I ate seemed to make the nausea worse, but some things went down easier.

I had bad tastes too. The worst for me were anything sweet and ginger. The ginger capsules were a last resort because I was afraid I'd burp up the flavor.

The other thing that I did to get through chemo was not to think about what percentage of it I'd completed. If someone asked I could say, but if I didn't count off the days, I just got through each one at at time.

I shaved my head just before my second infusion. The stubble fell out, but it was kind of like having just had a haircut - just a little itching in my clothes sometimes. I think it made me feel a little in control of it, and I didn't have to see my whole head of hair coming out.

I hope some of this is helpful. In my very limited and personal experience, there was nobody who could tell me exactly what to expect or how to deal with all of it, but I could take bits and pieces from others' experiences.

[EFmom]

Originally Posted by prairiemommy

Thanks everyone. It is hard and it sucks but there is no way around but through, right?

I seem to be getting every side effect in the book too, which is unpleasant. This Friday will be my second chemo, out of 6. That is, if I pass the blood tests and if this pesky cough doesn't turn into a cold or that my picc line doesn't turn out to be infected. (I've had a bad day)

I reacted much stronger than they anticipated to the first round. It didn't help that they prescribed domperidone as an anti-nausea drug (along with Zofran) but I of course couldn't take it, after having weaned literally the night before. So I only had Zofran and Gravol to use. It took me just over a week to fully recover. They said if it gets worse than that, they will have to spread out the treatments more than every 3 weeks, which would suck because I just want it over with.

Sorry for coming and complaining in a survivor thread but it's just nice to know that there are mothers out there who understand. Thank you though, for the support.

Please complain away, my dear, that's why we are here.

And complain to your oncologist. After my first round of chemo, I spent the afternoon on the bathroom floor. I wasn't throwing up, but I sure felt like it. The chemo nurse called to see how I was and I told her, and joked that I shouldn't complain because I actually hadn't thrown up. She said how I was feeling was totally unacceptable and that they'd try something different next time. For round two they added a Kytril drip, and for me that made all the difference.

I used to feel like all I did was talk about every little side effect to the oncologist, but really, a good one will encourage you to tell them everything. They have a lot of meds to combat the side effects, but if you don't tell them, they don't know.

[prairiemommy]

Good news!  I did complain and I got better drugs for Friday!  Also, if those don't work, I can call on Monday and they will order some super-seekrit stuff that is hard to get but works awesome.  So at least I feel like there is a plan in place.

When he asked me when I started to feel nauseous and I said, "While I was still here, getting the meds", his eyes went :shock: and about bursted out of his head.  So he said to start this med as they're pumping me up with fluids the morning of, instead of waiting until after.  He also apologized for giving me a drug last time that is also a galactogogue right after weaning cold turkey (domperidone) so that was nice. 

The bad part is I have a head cold but he has said that it's not severe enough to cancel chemo unless I wake up with a fever the morning of.  So I'll be coughing and blowing my nose throughout this round.

But thanks for all the help!  One more day and I'll see how this extremely hard to find med (3 different pharmacies to get it yesterday) will work. 

[jwoodbri]

So happy to find you ladies. I had looked several times before without much luck. I was diagnosed with melanoma one year ago today. Had surgery in Dec and Jan and was finally staged with 3a. I'm sure you guys know but that means it was in one of my lymph nodes. You'll probably think I'm crazy but I wish there was some chemo or radiation that worked on melanoma but as there is really no effective treatment I turned down their crappy one and decided to try to boost my immune system naturally. Would love to completely follow Kris Carr's advice but I was nursing and still am so I opted for juicing plus a anti-cancer diet along the lines of http://www.anticancerbook.com/ so that I felt like I was doing something while I watch and wait. It's been a rough roller coaster of a year in which I was sure at times I wouldn't be here now, but here I am and get this one... I'm pregnant too. I was talking myself out of the fourth I so very much wanted because I was worried that my immune system being suppressed would let any remaining melanoma run rampant and I'd be essentially untreatable. (My melanoma appeared while I was pregnant last time.) Trying not to think that way now though! Anyway so far I've only met one other person in my situation (pregnant after stage 3+ melanoma diagnosis) but who says I can't do well right? I have to keep reminding myself there is a chance that I could be sitting here cancer free anyway. I get locked into the "it will come back at some point I just don't know when" mind frame. Does everyone feel like that at times or is it a special melanoma added bonus? :) I hate that there is no expiration date so to speak for melanoma recurrences. I have heard of it coming back within the first year all the way up to 30+ years later.
Thanks, if you have made it this far!

So here's the kicker of the day... remembering that today is my one year from finding out I have melanoma. My OBGYN's office calls and I think nothing of returning the phone call. To which I am greeted with the announcement that I had abnormal cells found in my pap smear and that now I'm HPV+. Seriously??? They told me not to worry but did you think that worked? Of course not. Especially since she told me today of all days! Ugh. Cancer sucks doesn't it?

[Letitia]

Sorry that news was on an anniversary day.  My experience isn't with melanoma, but I know I'll be able to rattle off the the dates of my biopsy, when I found out the results, when I had surgery, etc, for the rest of my life.  And I'm sorry you're having to deal with this, especially while pregnant.

Servan-Schreiber's "Anticancer" was the first thing related to cancer I was able to read after my diagnosis.  I was so scared I couldn't think about it for a while, just went ahead with treatment, but I felt "safe" reading his book because he was coming from a place of understanding the fear.  Thanks for your link, I just signed up for the newsletter.

I started radiation this week.  Am awaiting the arrival of my Tortuga lotion, looking forward to trying it.  It got an impressive "0" from the EWG.  I've heard criticism of them, but who else is doing that kind of work at all?  I really don't like Aquaphor. 

Prariemommy

Don't know if you are checking this at all, but I thought of you this past week and hope #2 went better.

[jwoodbri]

Originally Posted by Letitia 
I started radiation this week.  Am awaiting the arrival of my Tortuga lotion, looking forward to trying it.  It got an impressive "0" from the EWG.  I've heard criticism of them, but who else is doing that kind of work at all?  I really don't like Aquaphor.

Good luck with radiation. I hope the treatment works well and you have as easy a time with it as possible. And for what it is worth I love EWG! I won't use anything on myself or my kids that I don't check with them first. Why add more cancer risks when you can easily avoid them, right?

[zjandosmom]

Hello all.  I had a mast and 6 weeks of radiation for breast cancer.  I am finally set to have my exchange surgery next week (8 months with tissue expanders is long enough).  Question for you all who did rads, how long until your energy returned 100%?  This past month I have finally felt like myself during the day but by 8 p.m. I am done and falling asleep on the couch.  I miss having any time in the evening for myself and my dh.  It's getting frustrating and now I'll be having another surgery and starting the recovery process ...again.  I know this next surgery is supposed to be 1,000 X's easier thant he mast but I'm still nervous.

[EFmom]

Zjandosmom, I had eight rounds of chemo.  The last four were Taxotere, which most people handle easily, but which knocked me for a loop.  I couldn't eat anything, not because of nausea, but because the taste of everything was disgusting.  I lost a ton of weight (which all came back later, sad to say), and was very weak.   I had a lumpectomy and started rads ASAP.  I didn't feel like the rads made me feel weak--I was still feeling weak from the Taxotere.

I hope the exchange goes well and that you are feeling better soon.  I think this treatment takes so long that it just takes a lot out of you and requires some time to feel like your strength is back completely.

[rabbitmum]

I'm a cancer survivor too! I don't have time to write much now, I just wanted to say hello, and all the best to those of you who are still going through treatment. I'll be back later! :)

ETA: Ok, I'm back to add a bit to my post before I go to bed. I was diagnosed with cervical cancer stage 2B in the autumn of 2008. I had six rounds of chemo and eight weeks of radiation (both at the same time). I have been going to check-ups every three months since then, and everything has been fine. :)

Hang in there, mamas! :)

Edited by rabbitmum - 11/28/10 at 3:56pm

[Letitia]

Does anyone else going through this have the patience to be a good parent?  I am so tired, and so down a lot of the time, and my kids just don't stop being needy.  I just want to hit them so often (I don't), I just have no patience.  Neither of them has special needs, but my daughter has had some social problems in preschool this year (she'll be 4 in January) and my son has always cried kind of a lot.  He's 2-1/2.  I am just such a terrible parent right now.  I bellow at them and don't have the energy to do the fun things with them.  It seems like we're always trying to find babysitters, never with any success, and my treatment has gnawed through our savings even though I have pretty good insurance.

I am more than halfway through radiation.  My back is burning.  Freaks me out not because it's such a bad burn but because of what's between my front and my back that I can't see.  I don't want to have more shoulder problems than I already do, I want my heart to be OK, I want my lung to be OK.  I have fantasies about just quitting radiation but how could I do that?  If I were 80 and nobody were depending on me, maybe.

[prairiemommy]

I know the feeling Letitia.  I have used TV more in the past 4 months than I have in the past 10 years.  I put my three year old to sleep in front of the TV with melatonin because the weaning has been so rough.  Last night, I had mouth pain so badly (thrush and mouth sores on top of it from chemo) that I was seriously ready to quit.  I thought I couldn't go on if it continued.  I have a bit more relief today and I feel better but I think it is totally normal to have days when you feel like you can't go on.  This is the hardest thing I have ever done.

As for parenting, I feel like sometimes I am uninvolved in my kids' lives because I spend a lot of time in bed.  Chemo has really thrown me down.  So my ILs are parenting and their choices are not mine but I have to concede to their choices because I need the help.  I can't do it on my own and DH needs to work.  So while I don't feel like I'm yelling or losing my cool, I feel like I'm not really "there" for my kids and that some of the parenting choices have been taken away from me because I have to spend my time resting and trying to get through instead of actively parenting my own children.  There are just some things that have to be let go. 

Can you get more help at home with the kids?  It sounds like the fatigue from radiation is getting to you and you just don't have the resources to do it all.  That's okay.  It really is okay to say, "I need help.".  This time will be over and you will be healthy again and you can make it up to your kids.  Can friends come on a schedule to help out?  Do you have family close by?  I live in Canada so we don't have to pay for any of my treatments so I can't imagine what's it's like trying to pay for this on top of everything. 

And honestly, although I know this is not a popular thought on MDC but can you let go of some things and let them watch more TV?  It has honestly been my saving grace.  We got cable right after my mastectomy and we will cancel it when this is all done but for one year, just one short year in their lives, they will watch a lot of TV.  It has saved me on the days when I'm alone with two of mine and Dh has to work and no one can come help.  Kids are surprisingly resiliant and will be happy to have you healthy in a few months and will forget about this time or at least get over it quickly.  You can't do fun things sometimes, you're too tired.  It's okay.  You're doing this so that you are able to fun things with them later and longer.  They don't understand it now which is why you have to get through however you can.  Many your way. 

[MCatLvrMom2A&X]

I had my thyroid removed in 96' due to cancer. I had radioactive iodine a month after the removal and have had no issues since.

I had the swelling in my neck, a goiter for approx. 6 years prior to my diagnosis. The Dr's wouldnt send me to a specialist during that time because I didnt have insurance. I am lucky that it was super slow growing or I wouldnt be here to type this out today.

[zjandosmom]

Letitia - I know how you feel!  I had to ease up and honestly my kids watched more TV this past year then in all my older's son's 11 years!  SOmetimes you just have to do what you have to do.  I felt like the worst parent ever but try to remember why you are in treatment.  I just kept telling myself it would all be worth it in the end...I would still be here in 10 years!  I did/do have some 'repair' work as far as my kids go but we are finally getting back to some kind of normal.  It took a long time to feel good again.  This month marks one year since I found  my stupid lump.  Try and let some of your guilt go.  I think in some ways it was easier on my younger 2 than my older 2.  My oldest ended up needing to see a therapist for a few months, but that has more to do with his coping skills/personality than anything else.  My youngest was super clingy and that has been hard.  Don't know if this has helped any but know someone else knows what you are talking about.l

[rabbitmum]

I'm amazed anybody can do much parenting at all while going through radiation and chemo! I was in bed almost all the time during my treatment, and my DH took care of everything to do with DS, the house, and cooking.

[prairiemommy]

I just wanted to update that I had my 4th round of chemo today and am doing much better on the new med.  No nausea though a fair bit of fatigue.  But I'll take that over the nausea.  I just hope I don't get mouth sores like I did from the epirubicin last week - it was awful and I could only drink liquids for days at a time.  But they said it's less likely with the Taxotere.  Though I am due for the body aches on Christmas Day but I'll deal. 

Right now I am cuddling a boy who will not go to sleep and has watched TV for hours because it's all I can do at 1 am, the day of my chemo.  Sigh.

[rabbitmum]

Originally Posted by prairiemommy 

I just wanted to update that I had my 4th round of chemo today and am doing much better on the new med.  No nausea though a fair bit of fatigue.  But I'll take that over the nausea.  I just hope I don't get mouth sores like I did from the epirubicin last week - it was awful and I could only drink liquids for days at a time.  But they said it's less likely with the Taxotere.  Though I am due for the body aches on Christmas Day but I'll deal. 

Right now I am cuddling a boy who will not go to sleep and has watched TV for hours because it's all I can do at 1 am, the day of my chemo.  Sigh.

Well done, PM! Yay for you! How many more rounds of chemo are you going to have?

[abomgardner417]

Hey ladies!  Haven't been here in awhile...don't come here much anymore, but I just wanted to see how everyone is doing.  Whether you're in the middle of chemo, rads, or surgery, just wanted to you all to know I'm thinking of you and hoping that you're all getting through everything ok.  Those that are in the middle of treatment and are letting your lo's watch a ton of tv...hey, whatever you need to do to get through it!  There were whole days that my boys and I sat on the couch ALL DAY and watched movies.  And they ate whatever they wanted on those days too.  Some days lunch was a box of Annie's cheddar bunnies.  Then I made up for it on my "good" days by making healthy meals and going to the park a lot.  Things change when you get cancer so you gotta find what works for you and make the best of it.  I mean really, is the world going to end if they watch tv and eat junk for awhile?  Nope.  Much better to take the time to recoup so that we can be there for our kids IMHO.  Wishing you all well!