Cancer Survivor Mama - Page 5

[prairiemommy]

I am here!  I had my surgery Monday and it went well but the hospital stay was awful.  I always have heard horror stories but never lived one and now I have and I can't believe it happened.  My social worker and psychiatrist want me to take it into higher levels in the hospital because it was just that awful.  I had a full hysterectomy with ovaries/tubes removed and I only got 1 round of morphine after recovery the entire day.  I was in horrible, horrible pain and I cried and no one gave me anything more besides a naproxen at midnight.  There are a million other reasons why it sucked but the lack of pain control has made it very difficult to recover. 

I still cannot eat without pain.  I have just stopped eating in fact because I get so violently ill after eating that it's not worth it.  This is obviously not a long term solution but I don't know what else to do. 

I did get a nice, new belly button out of the whole thing.  I got my period back the week before the surgery - no joke - so I know I made the right choice by having the surgery done.  I am starting to have little hot flashes here and there but I know it's not anything like it will be yet.  I have no sex drive anyways so I don't think I'll notice much of a difference there. 

Letitia - I'm glad that going back to work has eased your anxiety.  I put all my kids in school this year to help with that (I was homeschooling some) and I feel so much better.  I'm sorry the side effects have been so rough.  It's not fair that at least one little part of this can't be easy, right?  Sometimes I just get so mad.

Amcal - that sounds awful - sick kids plus injections 3xs a week.  Do you have help around the house?  I hope so.  Man, I feel for you. 

[Letitia]

Prairiemommy,

I am so, so sorry that happened to you.  I have an inkling of what it feels like to be in pain with nobody responding in a hospital - I spent an awful, awful night after a horrible surgery on my knee where some bone was moved around because of an injury.  At one point after I'd been pressing the call button for hours, a nurse's aid came in and asked "Are you the one who wanted the snack?"  It was awful, feeling so helpless. 

But I'm really glad you know it was the right decision.  I hope that makes it a little easier.

[amcal]

Oh Prairiemommy, I'm so, so sorry for what you went through. Please, please call hospital administration and file a complaint. You deserve a huge apology and maybe that will prevent it from happening to anyone else. Praying you start feeling better!

Got good news today - CT scan is all clear! Getting my port out in the morning. Woohoo!

[Letitia]

I do agree you should take it to a higher level in the hospital.  With my bad experience, I definitely let my surgeon know how I was treated wasn't OK, and I felt that was good enough.  In most places, the surgeon is the one who has written the post-op orders.  But I felt OK giving him that feedback - I'd known him a while and it was in the context of fairly good doctor-patient relationship.  If that hadn't been the case I would've gone higher up.  Of course that's easy to suggest when you're home, recovering from a big surgery, not feeling great.

[prairiemommy]

The funny thing is the surgical resident came by in the morning and said that there were orders in my chart for morphine to be given every 3 hours.  I just never got it.  It was a fail on the ward's part which is not under the control of my surgeon which is why I have to take it to the patient rep.  There were other things like I bled so profusely and no one changed anything for me and I wound up laying in a bed full of blood for hours.  It was seriously a nightmare.

I'm still battling to recover from this surgery.  I ended up with a horrible UTI last week which I don't think has resolved yet and now I also have leakage and bruising around one of my incisions.  So I'm going in today to see the surgeon.  It just doesn't stop.

WOOHOO AMCAL for your CT results!!!!!!  Oddly enough, my port scar is one of my worst scars.  I think because they cut through where you've already scarred over.  I hope the removal went well.  

[Letitia]

My port left a weird ugly scar too.  It had pulled apart while it was healing the first time.  I was so skinny my port was bulging more and more out - I was afraid it would burst through the skin, but it never did.  I think the stretching and the chemo weren't good for how that skin healed.  Rest of my chest looks great, except of course for radiation.  

I was a little scared to get the port out.  But it sure is good to move on, and good to have no fear of a child's head or elbow splitting the skin over it..   My daughter's been very curious about the scars in general.  Good thing I wasn't ever modest or irreversibly wedded to my chest.  i showed her some on my knee too, was surprised she liked those too.

[prairiemommy]

Letitia, I cry about not having a port still.  I was so mad when they took it out (but it had to come out but still.  I felt mad.).  

I had bloodwork yesterday that made me cry.  They have to go in on the top of my hand now because my good veins are caught up in the arm they can't use and it hurt sooo much that I had tears pouring down my face.  It took 3 lab techs because of the "2 pokes per lab tech" rule they have (so you can imagine how many times I was poked).  My hand looks like its been beat up today but at least my knuckle is moving better.  

I'm mostly healed from surgery, btw.  And I see my breast surgeon tomorrow and my med onc next week.  I might be switching to an aromatase inhibitor.  Thoughts?

[Letitia]

Prairiemommy,

I checked this board tonight for the first time in a long time, I'm glad I did.

That was pretty awful about your port.  I would have felt so vulnerable without mine.  I'm really sorry about the trouble they had sticking you.  I am at least an easy stick, although one side can't be used because of the lympedema.  

I'm doing OK on the AI (anastrazole, which is generic Arimidex).  They've got that awful reputation, but I'm fine (except for fiercely menopausal) and a friend of mine who is a young 57 or so just finished her 5 years in May.  Neither of us has/had disabling joint pain.  The estrogen-dependent parts of me feel like they are about 30 years older than they are, but that's one of the prices, I guess.  I kind of feel like I have to accept whatever awful side effect is coming my way from whatever the treatment is that gives me the best chance of being alive when my kids leave the house.  Sometimes that's hard to figure out because it's not like they have comparisons of every choice well worked-out for every type of patient.  I saw a second oncologist to see if I could get into a research study and she freaked out because I still had my ovaries - said AI's can cause huge ovarian cysts in women who weren't far out into menopause (or who haven't had oophorectomies).  I happened to have an ovarian ultrasound scheduled for other reasons a few weeks after that, and it was totally fine.  My ovaries look dead.  They couldn't even find a uterine lining the first time looking.  So that's all good.  So I'm still on the anastrozole. 

I'm trying to convince my oncologist and insurance to give me Zometa.  Really, whatever it takes.  

Letitia

[amcal]

Oh Prairie :(. I'm so sorry.  Can you request a prescription for emla cream?  You put it on an hour before your blood draw and it numbs the area.    It is amazing stuff.  I used it for my nuclear med test which is crazy painful and I didn't feel a thing.  In this day and age and after all you've been through, you should not have to deal with this :(

Leti - thinking about you!  Glad to hear hear update!

I continue to pray for you all daily.

[prairiemommy]

Letitia - thanks for the info!  My onc has given me an RX for letrozole (Femera).  I am not going to start it until DH and I are back from our first ever vacation without kids (!!!!), so in a couple of weeks.  They told me to expect vaginal dryness, arthritis-like symptoms and hot flashes but most of those will resolve within 3 months or so (except for the vag dryness).  So that's okay - I can deal with three months of issues if it means they will go away after.  

I'm glad that your u/s turned out fine and that you didn't have to change meds.  Here, they put you on AIs if you have 12 months period-free and acceptable FSH levels.  I don't think they check the reproductive organs at all after.

Interesting tidbit is that if you have just started the AI, you won't have bone issues right away.  They generally increase the longer you are on them and if you started chemo in a pre-menopausal state, your bones have a good bit of life in them and you are less likely to have issues.  A lot of the documented issues are with women who are much older than we are (as with most other breast cancer issues).  But I hear you on being worried about bone breakages.  The nurse told me to have a bone density test in a couple of years.  Have you had one yet?  That might help them make a decision on the Zometa. 

Quote:

 I kind of feel like I have to accept whatever awful side effect is coming my way from whatever the treatment is that gives me the best chance of being alive when my kids leave the house.

That really resonates with me.  That is honestly my goal too.  And I also feel like I'm trying to squish everything in right now and be supermom in case bad news comes knocking again.  It's really a tough balance.  

Does anyone know how long it takes your white blood cells and hemoglobin to rebound after chemo?  I'm just curious because almost my entire CBC was in the low or low-normal (just barely normal) range.  I'm still anemic too, so I'm starting iron.  

Amcal - how are you feeling?  How's the fatigue?

[Letitia]

Prairiemommy,

I did have a bone density test, pretty soon after I started the AI.  I have a family history of osteoporosis and have been allergic to dairy most of my life, so I was kind of worried.  But my bones looked fine last February or March, whenever it was that I had it done.  But then I had what was called an "insufficiency" fracture in my knee in late July.  I tore my meniscus, tried to do too much on it while I was limping, and got a fracture.  That's not supposed to happen!  I am worried about my bones.  I don't qualify for Zometa right now.

It has taken a full year since chemo for my white blood cell count to come above 3.  It's now 3.2.  I was severely neutropenic during chemo, and mildly neutropenic until my labs today!  My ANC is 2.2, that is the best it's been in a year, except for a time when I was pretty sick. It was a good sign that it went up with whatever infection I had, but then it came back down again. I even had a bone marrow biopsy because it was really low for a while.  That looked fine.  My anemia (red blood cells) recovered much faster.  My platelets were kind of in-between.  They were low-normal most of the past year, and now are mid-normal.  I hope that's helpful.  My oncologist said it's not comon, but he has seen people take this long to recover their counts.  

How are your kids doing now?  My daughter is doing so much better than last year.  She still talks about the cancer from time-to-time, but she's not seeming as stressed as she did.  One of my infusion days, she spent a lot of time curled up in a fetal position under the slide at school.  Her school was great, but nobody put 2 and 2 together that day.  I felt so sad for her when I heard that.  Nothing like that this year, and I feel like I'm a fully able-bodied parent again.  I hope you are getting there too.

Hope everyone else out there is doing well too.

[EFmom]

I haven't been on MDC much in the  last few months, but just looked at this thread. 

Prairiemommy, I am so sorry your surgery was so awful.  Unspeakable.

I'm an old timer as far as the aromatase inhibitors go.  I was premenopausal before chemo, and was on Tamoxifen for two years after.  I've been on Femara for about three and a half years now.  I had pretty bad joint pain at first, which is somewhat better now.  I've also had increasing osteopenia.  After my last bone density scan, my oncologist said medication was an option, but after he went over the potential side effects, I'm putting it off for a year.

The absolute worst is the vaginal dryness.  Awful, and nothing helps.  My GYN wanted to give me a topical estrogen cream, but the oncologist was less than enthusiastic.  Sigh.

[Letitia]

Is anybody still out there?

[amcal]

Still here!  How are you doing? Your daughter?  I think about everyone on this thread daily.  

I'm good.  I started out with 48 weeks of treatment and I'm at the end of week 33 - 14 weeks to go!!!  I'm ready to be done.  But, I'm so blessed to have made it this far.  Most people have to stop by now because of the side effects.  I feel very blessed. 

Scans have all been clear.  I'm almost at 1 year since diagnosis.  My chance of a reoccurance goes down at 2 years and then dramatically down at 5 - it's good to have a goal!

How is everyone else doing?  I think about you all and pray for you daily.  

[Letitia]

Amcal that's great that you've got so much of it done.  

My daughter is having a night-and-day year compared to last year.  She playfully tried to nurse on my last week (hard because I am flat now), but there wasn't the same neediness to it that she had at times in the past when she's nurse on my arm.  She wanted to play mama whale and baby whale because we'd just read a book.  Made me sad once again that something so special to us got stopped the way it did, but also quite happy that she could lightheartedly play around at it.  She's doing so much better.  We all are.  Cancer is still a huge part of my life because I've got a bunch of symptoms that are the collateral damage from treatment, and of course the fear that it's going to come back, but things are much better than a year ago.  Right now I am having a lot of phantom itching in my nonexistent right breast.  Really not so bad in the general spectrum of unpleasant sensations.  Not that I've given up trying to improve things, but it's stuff I can live with,.

I have a drop in risk at 2 years, but I'm not sure where the two years starts from, whether it was diagnosis or end of treatment.  If it is from diagnosis, I've got another four months to get to two years.  Because of the particulars of my tumour, I can't get far enough out from it to ever have the risk go down to nothing.  I don't think I'm going to tempt fate by celebrating anything other than birthdays.  I feel a heck of a lot better about birthdays since cancer - I don't care about the number looking old anymore.

Lettie

[amcal]

Hi Mamas!  Just checking in to see how everyone is doing?  I continue to think about you all and pray for you every day.  Hope everyone is doing well.  Know that we're here if anyone needs support <3

Quick update - had scans on Monday and everything continues to be all clear.  I'll hit my 2 year mark in April.  They consider my surgery date as the date I was officially cancer free so, they go by that date.  Looking forward to the two year mark :)  

Sending you all positive thoughts and wishes for HEALTH and peace!  

[Letitia]

I'm still here!

I'm not on the computer as much as I used to be, I think that's a good thing.  But it's good to still be here!

I hope the rest of you are too busy to be on these boards often, too.  I hope your kids are surprising you and delighting you.  I hope treatments are either over or tolerable.  

I myself continue to hang in with no recurrence of my cancer, but I do deal with a lot of damage from its treatment.  I just had a terrible infection in my lymphedema that was also in my blood.  The good part was that I didn't have to stay in the hospital.  My clinic just had me come every day, even weekends, for IV antibiotics, and I'm a lot better.  I was so glad not to have to be away from my family.  I'm feeling a lot better today and should be 100% soon. 

In general, life's pretty good.

[amcal]

Oh mama . I have chronic lymphedema in my leg as well so, I understand . I'm so sorry. You know, lymphedema can spontaneously reverse itself. I believe that is going to happen for both of us!
Do you have a pump to drain the fluid?

I'm so glad to hear you're cancer free! Awesome news!

[Benjismom]

Hey all:

I've been AWOL from Mothering lately. I've been spending a fair amount of time since my diagnosis on the Leukemia and Lymphoma Society support boards, which has a forum dedicated to my kind of leukemia. There are a few parents of young kids, and we talk about the challenges of keeping up with them, and talking about our illness with them, etc.

It's good to see that everyone here is doing well, all things considered. I am still on daily treatment, which has been very successful (knock wood). I am in what is called "complete molecular response," which means the current PCR technology cannot quantify the leukemic cells in my blood. They're in there, though, waiting for their big break.:) The drug I take has wreaked some havoc with my endocrine functioning, so I am working with an endocrinologist to normalize my thyroid function. I have ups and downs in that regard, and a lot of ongoing fatigue and musculoskeletal pain. I have had to scale back my expectations for my life, but I've gotten to the point where I am mostly OK with that.

Hugs--

Beth