I have been plugging along with my treatment, which is continuing to work well. The fatigue is worse some days than others and I have worse muscle pain than I had in the beginning. I've definitely had to lower my expectations about what I can get done, and that has been hard for me to deal with. Sometimes I get stubborn and overdo it, then pay for it later. My family has done well so far though we've had some forgotten assignments/musical instruments/etc with my oldest. I have to remind myself that moms without cancer do that too.
Prairiemommy, I'm sorry radiation has been so difficult. I hope you heal soon.
I hope everyone can get some relaxation in now that summer is here.
I'm glad this thread is still active.
In the support group I've been to they keep mentioning "the new normal." I kind of hate the term: I don't want this to be my normal. I want to be able to do some physical therapy or rub on some cream and be back to my old normal. I don't want the pain (Prairiemommy, I get it about having to live with pain), I don't want the loss of function. My particular loss of function isn't fatigue anymore, it's because my left arm is fouled up from the treatment. I wish "lowered expectations" were something that came without seeing the ghost of previous expectations.
Tonight I am just really, really angry. Angry at all my doctors (none of whom has done anything
particularly bad), angry at the disease. Angry that I feel this sense of urgency to make the most of my time with my kids but am so irritable I don't think I'm a good parent when I do spend time with them.
Letitia, I know exactly what you mean. I have days like that too. Just when I hate everything this disease has done to me and my family. I could handle the side effects - even the long term ones - if I knew they were a guarantee that the cancer would never come back. But like you said, you never know and you feel like you should make every moment count now but it's hard. It is so, so hard when you are sore, or tired, or hurting emotionally. And then the guilt washes over you and you feel like crap for not being a better parent because what if you get rediagnosed tomorrow?
It changes everything forever and some days it feels like nothing is changed for the better. I try so hard, when I'm in moods like that, to see what cancer has given me. It's a really hard exercise and some days I can only come up with stupid little things but when I'm in a better mood, I can see the stuff I have learned over the past year. I have learned that I too deserve some time and a life away from the kids - and that I'm a better parent for it. I've gained new friends (which always reminds me that I've lost friends too who couldn't handle me having cancer but I try to ignore that part), I've gained a new appreciation for enjoying my kids - I've relaxed a lot as a parent because I don't want to be remembered as a strict mom who had no fun. And I could go on and on.
But in the grand scheme of things, there are days when I just want to cry, scream and bang my fists because none of that makes up for what I've lost - the innocence of "knowing" that I would "definitely" be around to watch my kids grow up and to see my grandchildren. I know there are no guarantees but there are many days where I would trade knowing that there are no guarantees for the innocence and ignorance that I used to have.
And the pain. The physical limitations. The fact that I don't have breasts and my only option to ever have breasts again would be many painful surgeries and breasts that don't do anything but look like breasts. They wouldn't feel, they wouldn't nurse (not that I'm having more kids but still), they wouldn't look like how *my* breasts looked like. The change in family dynamics. The change in my children from having watched me go through a year of pain and having to see my cry when I couldn't do simple things like make supper or lift my youngest.
So I trudge through every day, trying to see the bright side in everything but I still have that underlying feeling that I would like to run away and hide because life will never be normal again. Living with the repercussions of cancer makes your life abnormal. You are forevermore described and labeled as someone who had cancer. I have to wear a compressions sleeve every day. I have a super long and complicated medic-alert bracelet now. There are constant little daily reminders that things will never be as they once were.
And it sucks.
are you guys doing anything for the pain? there are options out there. I'm done with reconstruction. No, they're not my breasts. No I'm never going to breastfeed again (but I'm 43 so was I really going to have another one? no). But they make me feel normal. And the process of going through the expansion was painful (I was on muscle relaxers most of the time) but now that I had the exchange I feel much more normal. I'm exercising again etc. I'm taking cell salts, which help with nerves and calcium and inflammation. Take magnesium to help the muscles relax. Traumeel (includes arnica) gel helps painful areas. Etc. I feel for you guys. It is a whole new reality.
Prairiemommy, that's it exactly.
I wish I had more of whatever it is that allows people to see the positive. Lots of times I just can't find that in me.
I had found that meditation was helpful for the pain. I have also tried acupuncture. My pain isn't usually so bad that I'm wincing (well sometimes) or writhing, but it's like this repeated jab, "Oh, hey, that's where you had cancer" or "Oh hey, that's where you're all welded-together from radiation." Meditation was really the best thing; I did an 8 -week MBSR course and found it really helpful. Well then I should be doing it more, right? It just feels like it's one cancer-demand after another. So many appointments. Exercise to decrease risk of recurrence. Manual lymphatic drainage for the lymphedema. Reading about nutrition - our household has made some big changes. I just run out of steam and have to go to bed, and have to pick which is the thing that gets the last little bit of my awake-time.
I was never a very patient person, and had a temper. My family was surprisingly amazed when I had kids and found this whole different side of myself. Now it's just gone.
Kathy, initially I wasn't sure what I'd do about reconstruction but now I'm sure I won't. I just could not live with myself if I had an elective surgery that caused me more chronic pain or more lymphedema. I don't so much mind being flat, oddly enough I mind the radiation changes much more and the general public doesn't get to see those. It's not sexy, but at the time of my surgery the biggest directly breast-related emotional hit was having to finish weaning my daughter. This discussion board was just about the only place I could say anything about it because we were doing a sort of child-led (more co-led) weaning. My daughter is 4-1/2 now and rarely asks about it anymore. That ache has lessened.
As I type this it is more and more apparent to me I need to find the space to meditate.
:hug letitia. I can relate to everything you are saying. That too is also my biggest reason for not having reconstruction - I cannot deal with more surgeries and more pain and more risks. I talked it over with my surgeon, who knows me well, and she agreed. She also said that she would likely never chose it for herself if she had to make that choice. I am quite enjoying being flat - it beats being one-breasted for the 9 months that I was. And I like not having to wear a bra (and I worry about having to wear one with the nerve pain and whatnot) and I like my scars enough. They're flat and nice - for incisions, you know?
And the nursing. I was really open about my weaning even though my DS was 3.5 yo. Four months he asked to nurse at night and he finally stopped. When I went in for my most recent surgery, he said, "But how will I fall asleep at night if you have no more nurse?" even though it had been 6 months since he had last nursed. He's well over 4 now and still wants that comfort and I can't give it to him. And that makes me cry.
And no one tells you that even after treatment is done, you still have to pick and chose what you can do in a day and then crawl into bed and wait for the next day and a new round of energy so that you can try and make up for the day before (but usually end up doing the things that need immediate attention again - just like you had done the day before - and many things still fall behind). Now that I've asked about this, they tell me it could be 6 months to a year before I start feeling like I am healing from the treatments.
And yes, aside from my new surgery site, the old pain that's there daily is just sort of a poke/ to remind you that's where the cancer was. The pain killers I'm taking for the new surgery site don't really help with nerve pain so I never get a break without pain until I'm laying in bed and not moving at all (and only on good days even).
Kathy, I haven't tried much for the chronic pain yet because I've always been dealing with immense pain from immediate treatments. I haven't gotten to a place where I can take a breath and say, "Okay, let's move on.". I do see a chiropractor which helps immensely and I have just picked up doing my physio exercises again and am starting to see some improvement. I hate that I got to a good point with my arm, had radiation, and then took like 5 steps back. I lost mobility, I have increased nerve pain ever since and it just sucks. Sometimes I don't want to do anything about it because I'm so mad it's there. I know that's a bad attitude and I usually get over it, but yeah, it's still there.
I think worse than the pain is when I get an itch in the part of my skin under the numb part. That can bug me for hours because no matter how much I try to scratch it, it never goes away. A lot of times, if DH is around, I will get him to rub my entire back and generally overstimulating those nerves helps my mind to stop focusing on the itchy nerves.
So it's hard. Just because treatment is over doesn't mean that I feel great and am ready to join the world and be who I once was. I never will be that person again and now I'm just learning it. And I think it's okay to take some time out to grieve that.
have you tried cell salts? there's a nerve combo (the phosphates) that has helped me with nerve pain. I'd also see if you can find an osteopath. They do much gentler pain relief than a chiropractor. And sometimes you need gentler. You guys are doing great!!
Hey all. I have a brain CT scheduled for Friday. I've been having headaches and they want to rule cancer out first before treating the headaches with anything else. Well, technically, I've had headaches and blurred vision but at different times.
I'm really scared.
Oh Prairiemommy, I am so sorry you're going through this. I will be thinking about you tomorrow and trying to send some good energy your way. I had a scare a few months ago with a pain along the edge of my sacrum. The scan didn't show anything and eventually it went away. Sucks to be in a situation where new pains are always going to mean a scan of some type; it is so scary.
Thanks Letitia. I had the scan today and of course they don't say anything there because it needs to be read by a specialist and then sent to my onc. I anticipate knowing by Tuesday, which seems so incredibly far away.
I know. I hate this "new normal". I want my old normal back where I could have just a headache and not need to be rushed in for an urgent CT. :(
Hi! I totally forgot to update because we were packing to leave on vacation.
The results took FOREVER to get back. I finally phoned and left a message Tuesday afternoon and got a call back not 10 minutes later.
Results? ALL CLEAR!!!!!!!!
*And* also this week? I was discharged from the rad onc's care! He said that he wasn't worried about my headaches because they are intermittent and cancer is usually all the time, and they get progressively worse. And I have days with and days without headaches so that is good.
I am very relieved and feel like this is maybe starting to disappear behind me for a while. We are on our first real vacation since before I was diagnosed.
Thanks for asking, Letitia! How are you doing these days?
Oh, I am SO GLAD for you.
When I was having the pain at my sacrum, it honestly felt a lot better as soon as I got the scan results. It had even been waking me from sleep. Now it's completely gone. I hope that having your fear relieved goes a long way to improving the pain itself.
I am doing OK. Developing lymphedema was really devastating even though my lymphedema is not that bad. Just makes me feel more wrecked - I feel nearly nauseated looking at my arm and knowing I'm never going to see my veins again, which is all head stuff because despite the lymphedema and the nerve pain, my arm still works fine and I've been really active. I just have to accept it. There's a really good discussion board on Breastcancer.org for the lymphedema. I have found their other discussion boards marginally helpful and a lot of times they just make my anxiety worse. The lymphedema board is different because there are two women who are really dedicated to getting people good information but there's also a lot of humour. So I'm adjusting to knowing I'll live the rest of my life with my arm in a sleeve or bandages.
I have that weird itching too. It's worst when I'm exercising. Sometimes I just press down directly on it, and sometimes I scratch on the nearest skin that has sensation. I try so hard not to scratch the numb areas because I don't want to break the skin.
Mostly I'm just dealing with anxiety. Just passed the one-year anniversary of my diagnosis and today is the one-year anniversary of my surgery. Wishing I had loads of money so I could travel and be involved in somebody's research, but I don't so I can't. Thinking maybe if I'd had a tiny mammogram-discovered tumour with no nodes I wouldn't resent all the people telling me I'll be OK. Maybe. Trying to be more patient with my kids. I've just been offered a job that would mean I wouldn't be taking care of them as much, and I feel really sad and kind of a failure that I think they'll be better off spending their afternoons with somebody else.
My daughter (4) told me while she was brushing her teeth the other night that she hopes I don't live far away when I'm a grandma. Her grandmas both live across the country. Then she added, "I don't want you to die of cancer mama."
My adult family just wants to be done with this. I don't know how I can do that.
Have a good vacation. I am so thankful for you about the scan results.
Prairiemommy - that's awesome news! I've been following this thread and your posts and have kept you in my thoughts and prayers. There is just nothing worse than waiting for test results.
I guess I should introduce myself. I was diagnoses a couple months ago with melanoma stage III. This is my second melanoma. The first one was very small and on my arm. I insisted on a lymph node biopsy which they would never have done at my stage (1B) and it came back clear.
Then, a few months ago, I insisted that a mole on my leg be biopsied. I go to one of the best cancer centers in the country and I've pointed out this mole at every visit since my first melanoma. I was always told it was fine. Well, I insisted. It came back melanoma. Again, stage 1b. I again insisted my lymph nodes be tested which of course they never do at that stage. But, crazy as this is, it was in my lymph nodes. 2 of them. It was microscopic but, it was still there. So, that bumped me to a stage IIIa. Darn.
So, really the only treatment at this point is surgery - wide excision around the melanoma and a lymph node disection. And then, some people wait and see, others do interferon. I chose a year of interferon. I just finished the 1 mo IV treatment and now I'm on to 11mo of home injections. The IV treatment was really, really hard on my body and I had to stop 4 treatments early. My liver enzymes went through the roof. Normal is around 35, mine were in the 500s. sigh.....
I did fly over to a clinic in California and they were doing clinical trials but, there was only a 50% chance I'd get the drug and I just wasn't willing to take that chance. But, there seem to be some really good drugs on the horizon but, I'm not going to need them. I just know that surgery took care of my cancer and that I'm cancer free. The interferon is just an insurance policy.
Anyway, just wanted to introduce myself and to let you all to know I think about you all the time and send you all my positive thoughts and prayers.
Welcome Amcal. I'm so glad you pushed for evaluation of the other mole. How old are your kids? That's a long time to have to deal with a treatment that makes you feel bad. I hope you have the help you need. My kids are right now crawling under the computer and needing some attention!
Hello Amcal! I'm so glad you pushed for them to test further. I mean, I'm sorry about the news but I'm glad you know what you're dealing with. The unknown is so much harder. I wish you the best with your treatments.
How is everyone doing? I know it's been summer and we're probably all busy with family and stuff but I just was thinking of you guys the other day and wanted to check in.
I'm doing okay. I have my last surgery on September 19. They are going to take my ovaries, tubes, uterus and cervix. I was really torn about the cervix but in the end I rationalized that if our goal is to reduce my risk of cancer, leaving a portion of the uterus is not going to help. I'm a little worried about bladder integrity afterwards but they said they'd re-evaluate it and come up with a plan if need be.
I'm starting to worry about going into menopause. I think because it's only a couple weeks away, it seems super real. I still haven't gotten my period back from chemo but I worry that I'll be really depressed and messed up when menopause starts so suddenly. Has anyone else been through this? My social worker talked about having people in place to support me but I don't know how to do that if I don't know what I will need.
So I hope you are all well and that the lack of activity on this thread is because you're out enjoying the summer!
Sorry I haven't been on in a while. I really hope your surgery today went perfectly.
Chemo sent me very quickly into menopause. My last period started the day after my first infusion. The hot flashes started a few weeks after that, and my hormone levels were pretty quickly those of someone menopausal. It's definitely been rough. I'm not sure how much of my difficulty has been from the chemo or from the menopause, but I just feel a gazillion years older. My skin is different, my hair is different, and I have no sex drive anymore. I don't know if my emotional and coping problems are related to the menopause - I certainly have other reasons for them too. But, overall, I'm really, really thankful I crashed into menopause so abruptly because it's a good thing for the cancer.
I went back to work full-time. I hadn't been working part time because of cancer, but because of kids. I just felt like I needed to. I couldn't deal with the levels of anxiety I was having when I was home alone with the kids and just felt like an awful parent. Financially it's good for us, but the real reason was what was going on in my head. It's been so far an OK thing, but sad. My daughter, who is now 4-1/2, has gone into another phase of just wanting to hug on me all the time. I absolutely let her. It feels really weird to not the kind of mother who is home a lot with the kids anymore.
Is anyone else out there? I just stopped checking the board when it got quiet.
Letitia - I'm so sorry. The physical changes have been hard for me too. I'm gaining weight, loosing hair, my skin is dry and sallow they think the treatment is blowing out my thyroid sigh....
Hoping that going back to work becomes a positive!
Praying for strength health and healing for all of us!
Just a quick update - kids have chicken pox and I'm exhausted. I do my injections M,W,F so the day after is rough....but, we're making it through. I have a CT scan on Thursday and when (not if) the scan comes back clear, I can get my port out next week! I can not wait to get this port out.
Please know I think about you all constantly and pray for you daily.
Amcal, I hope the CT scan went well.
I was so glad to get my port out. They told me I could keep mine indefinitely, but that seemed like assuming the cancer would come back. It was also a problem with my kids. Mine are young (3 and 4-1/2 now) and they just could not help whacking my port all the time (and sometimes my daughter did it on purpose). So I was so, so thankful to have had the port and saved my veins, but also thankful when it was done.
Hang in with the injections. That's a lot of rough days if they're every M, W, F.
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.
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.
Got good news today - CT scan is all clear! Getting my port out in the morning. Woohoo!
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.
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.
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.
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?
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.
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.
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.
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?