Starting Chemo, November 2013 Group

I would certainly join the Facebook group if someone set it up.

I am in if somebody can set up the FB page for this group, unfortunatelly I am not that savvy to do it myself. 

I would call it just: the November group or the Strong Women's Group

Bec: I love hearing that there is some promising bc research in the horizon. Glad to hear that your skin is feeling better. 

Thanks to all who have responded to my question about the timing of HT. 

I have been battleling low energy and feeling headachy for the past few days. I don't know if this weird, cold weather has anything to do with this or I still have SE's from my last chemo. Well I would not rule that out either, because I still have the sore thighs and tight muscles all over among other things.

Lisa nice find.  The pottery looks great.

I was started on Tamoxifen 3 weeks post Taxol.  I'm still getting Herceptin.  I've been told my MO and PS I could get back to doing everything I use to do.  What a crock.  My feet, hands and abdomen retaining fluid. I've been trying to do some walking, biking or weights, my legs hurt (not like regular muscle aches from exercise).  My legs hurt so much I can't even sleep.    Pat does this really get better?

My husband and I went on the photography field trip on Sunday.  By Sunday night I couldn't walk at all.

Anazon - I think my leg pain got MUCH better all of a sudden during week six.  The heaviness is all gone now and so are the aches.  I even walked a pretty fast mile tonight.  Never could have done that a month ago.  It gets better!!! And so will you

I'll be 3 weeks PFC on Monday and I believe my leg pain was a tiny bit better today. By that I mean, if I got up and walked to my kitchen, my legs didn't hurt until I got to the sink and stood there a moment. Yesterday they hurt while I was still walking up the hallway. Tomorrow I'm hoping to make it to the living room before they hurt. Big plans, indeed! Seriously though, I did have SOMEWHAT less pain today. How much of that is just because I'm getting better and how much of it is because I spent two days taking that fluid pill, I do not know. Decided that two days in a row of it was enough--don't want to actually get DEHYDRATED ya know, so did not take one today. Dr. Rockstar gave me 30 of them and left it up to me when to take them and when not to. I'll let y'all know if the leg pain and swollen feeling is worse again tomorrow after not having one of those today.

Smrlvr, take the time to consider that you might only be *temporarily* cynical and bitter because you are angry, and with good reason, about all you've had to endure at this point. Don't assume that you're permanently bitter and angry. Your old happy self is still in there someplace, and eventually she'll see that the coast is clear and that it's safe to come out again. I believe this about my old happy self, and I believe it about yours, too. I think we just have to be patient with ourselves. Before too long our old happy selves will begin venturing out for a bit of sunshine here and there, and soon after that they'll be the dominant forces in our personalities again. Keep the faith.

I think I may have had a light bulb moment tonight myself about what's been causing my intermittent weird bouts of bleak depression. I'm afraid it's actually my klonopin. Yikes. I realized that what happens is I wake up in the mornings feeling pretty much okay--all things considered--and then if the depression is going to hit me, it hits me sometime after breakfast; an hour or two. Well, what do I do every morning right after I eat my breakfast? I take whatever pills I'm supposed to take for the morning. This morning I woke up kind of grumpy--not a bad grumpy, but you'd have to really know me to understand what a "good grumpy" really means lol--about having to take pills EVERY SINGLE DAY for the past six or so months. I also wasn't hungry. So I went an hour or two and didn't eat breakfast and didn't take any pills. 

Finally, I ate some popcorn (I don't know why, I just wanted popcorn,) and took my pills. By this time it was noon'ish. About 1 o'clock, bam, bleak depression. Hmm. I've learned over the past week or so that when it hits, if I just roll over and take a nap, it goes away (usually.) It wasn't too bad, and I had stuff to do, so around 3 I took a  nap, and my husband woke me up on the phone about 4, and sure enough, I felt better.

Tonight,  I was on the phone with my mom and realized it was about 9 o'clock  and that I hadn't had my second daily klonopin dose, so I told her to hang on a sec, and took it "while I was thinking about it." About an hour later, bam, same weird bleak depression feeling about nothing, out of nowhere, for no apparent reason. Aha!

So I went to Dr. Google (lol) and according to Web MD, a "feeling of depression" can, indeed, be a side effect of klonopin in some people. Sh*t. 

Weird thing is, that feeling is still there right now, but since now I believe I know what it is, and that it's not REAL, it's not quite so bad. Still, I don't like it, and I don't want to be dealing with it several times per week.  Or at all, really.

So I reckon I better let Dr. Rockstar know about this latest development and see what he thinks we ought to do about it. 

This sucks, because not only  has the klonopin gotten me through all this chemo stuff with very few really major blips on my mental/emotional radar, but it's done wonders for the anxiety problems I didn't even know that I HAD before. I can take a ride down the road with my husband without holding onto the door handles and center console with a death grip. I haven't quoted him any (made up) statistics about how easy it is to flip an SUV in *months*, for which I'm sure he's incredibly grateful. I've even managed to sleep through thunderstorms instead of feeling like I needed to keep a constant watch out every window to make sure we're not about to be ambushed by a tornado. Plus I haven't been subject to bouts of irritability and general impatience that I now believe were basically the result of generalized anxiety. Sigh.

Oh well. Maybe Dr. Rockstar will either have a good solution or--since he's a Rockstar, not a shrink, lol--will have a good psychiatrist he can refer me to. I DO know that I don't want to deal with the anxiety of tapering off klonopin (you're not supposed to quit it suddenly) when I'm already feeling some ramped up anxiety about going into rads soon. It's not that I'm afraid of rads, specifically, I'm just always in a heightened state of anxiety when I'm entering a new "phase," especially when that phase includes a routine....because yes, scheduled routines in and of themselves also are a source of anxiety for me. (See, I'm a mess. lol.) At this point I think some identifiable and not entirely real depression is actually preferable to panic attacks and blubbering meltdowns while I'm trying to get through rads--which starts in 2 or 3 weeks. But damn, why now? 

So there's MY vent. Anyone else?

Looking forward to the facebook group. I'm always looking for that "like" button here... 

Hey, Thanks to Smrlvr for agreeing to set up a Facebook page. Would be a lot easier than this thing! (Although I'm so grateful to breastcancer.org. What a fabulous help it has been! When I've got some $ it will definitely be on my donation list! Speaking of which, doing our taxes my husband was blown away by how much we have spent on medical things, not to mention other household help. This little thing is not cheap!)

Lisa, I'm jealous of the pottery! Maybe you can find an omen in there??? As for your mental status, maybe it's just time for a meds change. I'll bet a shrink would be happy to prescribe something different. They does love their drugs...

Amazon, I started hormone therapy the day after finishing rads. It's been ok...

Leg Pain. Yes, it really does get better! Like Becca, mine eased around week 6 when I lost the 12-15 (!!!) pounds of water I'd been attempting to lug around. When I had to go to the ER at about week 5 the nurses there were shocked at my weight. They have a game to amuse themselves guessing weights, and they guessed mine at 15 pounds less than I was, they had a hard time believing it. It was, of course, all in my legs and feet.

I'm exercising, trying to get some level of stamina and fitness back. It's hard, damn it's hard. If I work out I do NOTHING AT ALL the rest of the day. It's discouraging, but in the back of my mind I have the little voice urging me one, telling me that it will improve. It's sorta like you Lisa and the pill, all is great, I feel actually NORMAL and then I push myself physically, and I'm done. In bed napping, or watching tv. Unable to even sew. So very very tired. My feet sometimes still hurt, but I don't think it's neuropathy I think it's because my muscles have all contracted. My trainer had me do some horrible foot exercises, and it hurt just like my regular foot pain. Since then, my feet actually have hurt less. I definitely need to stretch and stretch and stretch.

I don't go back to the MO for 3 weeks. Until then I'm trying to suck it up with the hot flashes. They start about 5 pm, and ease up at 5 am. They are full body, drenching, dripping sweats. Gross. Then i get chills. I have to shower and change clothes. They wake me up and I get no sleep unless I take a sleeping pill, which I'm getting super low on. How am I supposed to travel if I need two changes of clothes per day, and clean sleepwear every night? 

Lisa, your walk isn't hilarious at all. We get it!  It's a huge deal after having pain wooden legs for months and breathing heavy at the most minor exertion. So happy for you!

Hi Ladies,

I just got a chance to read the posts over the last few days and I may have  a bit of insight into the feelings of depresssion or feeling blue. I am exactly one month post chemo today, and until this week, I too felt a bit depressed. What changed? SLEEP and less pain!!!. I was to bloated, to sore and to sick to get a full nights sleep. Sure, I slept but last night I REALLY slept, and the change in my mood was profound. Also, as my pain level goes down (albeit slowly) my mood gets better. And, honestly, it has take some time for me to adjust to the new realities of my life. Yup, I had cancer, and that really really sucks. (Note, I say HAD, that has been an adjustment, in itself...). But I need to make my way back to what I use to do and who I use to be because, like everyone here, I am more than my cancer. So, please go easy on yourselves. As my BS said o me recently, your brain IS part of your body and if you think its not working right after having chemo, your probablly have issues because of the chemo. Just give it some time... (I really like my BS). I really really know what it is like to feel like serious crap, and how each day feels like 20 days while you are in that state, but it WILL pass.  

Sorry I had to rant a bit, but I hate to see you ladies blame yourselves for feeling bad, when  it could be the massive load of drugs in your bodies.

Yesterday, I had my PET scan. It has been an interesting week, for sure. I met with my RO on Tuesday, a young super smart and very straight forward lady, whom I adore. She wanted to meet with me to give me the 'goods' on the PET. The upshot, for all that are interesred, is that the PET is not good for diagnosing breast cancer, either in the breast or elsewhere in the body, that is why it is not protocal here in Canada. However, in some cases, it will find cancer that other scanning techniques done. Because I have not started Rads yet, my RO wanted to warn me that if the PET picked up anything, Rads would be postponed and possibly cancelled - You do not get preventative traetnment if you are metastatic... So my chouces were, 1) have a PET and potentially find out I had metastatic cancer and not get Rads, 2) Have a PET and find out nothing new and get RADS, or 3) don't have the PET. (They recommend the latter), I went with getting the PET. FORTUNATELY, it came back clear, no new information so I am clear for RADs. Yeaah. Now I just need to get clean biopsies on Tuesday, and I'm good to go...

Lisa - Congrats on the extended walking - Keep it up!! I'm about a week  ahead of you in recovery and the differnce between week 3 and 4 is huge. Hang in there!! Good luck with the treasure hunting!!

Amazon - You have flowers already? My crocus are just showing their noses. It will be at least another week before I have flowers. My hair is coming too. I hope to be able to go wigless SOON, I hope....

Bec - Glad to hear the armpit is getting better. You don't need MORE pain, right?

Pat -I hope you get your eneergy back soon. I am sorry it has been a hard road. Question - Have they check your thyroid and parathyroid? The steroids can shut them down which causes low energy amoung other things. Just a thought.

Quirky - I too am jealous of your eyelashes!!

Have a great Easter, everyone

JAB

Hey, inks, I know what you mean about the difference between IIb and IIIa....the intellectual part of my brain knows the difference is very small and the treatment is the same, but I sure like the sound of II better than III!  My pathology placed me quite firmly in IIIa, but I remember prior to surgery hoping for smaller size or fewer nodes, just so I could get that IIb.  My doctors never discussed staging with me for the very reason that the treatment would be the same either way.  If I were you, I'd concentrate on those fab doctors who still like to call you IIb!

jab, congrats!  I can hear your relief in your post!

I also see a lot of truth in your thoughts about sleep and depression.  I woke up at 4 am and managed to overpower my sleep aid with a huge anxiety storm in my head.  I started worrying about all the things I needed to get done today, and that quickly escalated to this is the last Easter all my kids will be home together and what if it's my last Easter and how would I ever handle progression and I should have been better at parenting and I'd better calm down because I know stress led to my cancer and...and....and.  I finally got up at 6 and went for a walk, and I blubbered and cried the whole time.  In my head through my sobs, I kept hearing my therapist telling me (when I commented that I don't see the point of having meltdowns; I know they happen and we are entitled, but they don't accomplish anything) that feeling emotions IS the point.  Well, pah!  I know that I apparently needed to get that all out, but I don't like that I have felt utterly crappy all day.  I have been getting through the day by putting one foot in front of the other like the song says, but aren't our lives supposed to be so much more meaningful than that at this point?  We haven't done all that we've done to our bodies just to try and get through a day! I'm so frustrated.  I hear all of you telling me that it will get better, and I know you're right and I know I'll feel like my usual self tomorrow.  I just don't like today.

I AM feeling better today, thank goodness!  I woke up at 1 am, felt a fret coming on, so I took an ativan immediately.  I didn't even occur to me to take one the other night, but I probably wouldn't have anyway since I had to wake up in a couple hours.  The state of my mind is so fragile....I hate it, but I'm grateful that I have resources available to deal with it.  Thank you!

It's sad to read that some of you are having so many problems emotionally. I have always had occasional depression but it never lasts long. Maybe because I basically grew up as the middle child (oldest sister got married and left home when I was only 6), next oldest was in to everything and quite a wild child, youngest is the original drama queen. And I'm still the only introvert in my very large family. I just learned to deal with everything on my own, so I manage not to let any depression get to me. But the way it feels when it is hanging out is awful. I don't know if I manage if it was any worse.

Having a lot of trouble sleeping. The leg and foot pain starts as soon as I go to bed. Funny, but I don't really have much pain during the day, just at night. Toenails hurt, feet burn, and my calves feel like the Incredible Hulk is squeezing them. The pain pills I have aren't doing much good, but I don't know what else I can take. All of the 'codone' drugs make me sick. Going to ask Monday.

Not feeling good about Monday's visit to the BGC. Everyone says "but it's your last one, you should be happy". Yes, I'm happy that it's the last one. However, those people don't have to face the SEs, which are getting worse each time. My tastebuds still aren't much better, the leg pain is worse, tears run down my face constantly. Yesterday, I planted a few flowers in a large pot and it wore me out. And then there is the next phase of treatment. I've gotten used to the chemo routine, now it's nearly time for the next thing and something new to get used to. So, yeah I'm happy to be at the end of this crap, but that sure doesn't mean that I have to be happy about it. I guess only you ladies would understand that strange sentence.

Smrlvr, thanks for getting a facebook thingy set up. With all of the unknowns we've faced, it's understandable that our happy selves are in hiding. But I think that's all. They haven't ran away from home, they are just hiding. And one day they will come back out to play. It will probably take awhile, longer for some than others. But one morning we will wake up and think, "Gee, I feel great today", not "Crap, I have/had caner" then happy self will pop out of hiding.

Bec, we ARE entitled to meltdowns, we can't always stop them from happening (and I'm not so sure that we should even try), we don't have to like it when it happens, but we also can't let them drag us down too far. Always try to remember that tomorrow has the potential to be a better day.

lisa, congrats on your walk around the house. Unfortunatly, I do that several times a night, trying to get some relief for my legs. And good luck with the treasure hunting. That sounds like fun.

Inks, it's good that you aren't letting the different staging get you down. That really just proves that it's just a matter of the pathologist opinion and not a hard and fast statement of fact.

jab, congrats on the clean PET scan. Hopefully the news on Tuesday's biopsies will be just as good.

Pat, When are you leaving? It's terrible about the hot flashes. Would maybe one of the cool pillows help any? I do know a woman who got some of those little plastic ice cube things and would put them in her bra to help her.

Was just thinking about last Easter. It seemed like such a bad time. We had to change our plans for the day, have dinner at my daughters instead of here, because we had a break-in just three days before. I was so upset, and thinking that things were so horrible. From today's perspective, last Easter was a cakewalk after all. Still having it at my daughter's, but this time it's because I just don't have the energy to do it.

Hope everyone has a good weekend and a great Easter

I haven't had a chance to post anything in the past couple of days due to a lingering, pressure headache that seems to get worse every time I start looking at the computer screen. I feel extremely tired and my eyes are feeling it too. I don't know if I got the headache from being so tired, or from my seasonal allergies creeping up on me this spring, or my messed up sleep pattern due to those darn hot flashes & night sweats. Perhaps, it's a combination of all. As far as the flashes, I don't feel them as much during the day, especially when I am 'busy' doing things . Maybe I just don't pay attention to them. I do feel some warm waves here and there, but they don't bother me and I don't sweat as much during the day. It's mostly at night that they hit me with a vengeance. The usual time is around 2-3 a.m. when I should be in my deepest sleep. I wake up steaming hot, dripping sweat especially on my head, back and my chest, then I have to change clothes and go to the bathroom. When I get back to bed I am freezing, then I pull my heavier blanket over and the hot flashes and sweating come back almost instantly, so I wipe myself off, try to sleep, but then I get the rolling muscle twitching that keeps me up until I start to get cold again, then I pull my thicker blanket on and the next minute I start feeling uncomfortably hot and the horrible cycle goes on! For a few nights I tried to change my sleeping pills for melatonin, but I felt worse while on it.  Could it be that melatonin is an estradiol lowering substance, hence more flashes? I don't know what it's going to be like once I start on Tamoxifen!

My hubby threw his back off and is quite immobile, so I need to take care of three people at the moment: my DH, my 9 y old son and me. I find that taking care of myself is a lot of work, so two more people on top of it is more than I need!

Last Thursday I got a deep tissue therapy massage, but boy I am now in more pain than before! Especially my legs when going upstairs. I am sort of OK walking on a straight surface, but any climb is a killer. 

Lisa, wally: I hear you about the burning feet and numb toes. It's sure annoying.

I feel the burning sensation in my hands and feet when my skin comes in contact with anything slightly warmer than warm. 

Inks/lisa: When are you starting rads? I finally got my supply of Curcumin and emu oil to be used during rads. BTW, inks: Are you going to be using them in your new radiation centre as well? How is your baby feeling?

Pat: I hear you that going back to normal is a process. At least you can claim some days as normal and the other ones as gradually progressing to the norm. 

Wally: It's hard to be happy and excited about another chemo, even if it's the last one, knowing that you will be hit again with all those nasty SE! Not fun! After you finish and you start feeling a bit better maybe we can throw a virtual END of CHEMO party for everyone here!

Jab: I am happy to hear that your PET scan result came clear. That must have been a big relief! Praying for good results from your biopsies!

Lisa: Glad you figured out the cause of your depression. At least now you can either try the new medication and see if it works better or stay with the old one with its now apparent SE. 

Your walking is taking a positive progression and that's great. 

Being patient with feeling crappy is hard especially if you think you SHOULD be feeling better. I have the same issue with it, because frustration kicks in pretty quickly for me following by feeling blue. 

I am also feeling a bit nervous getting off the 'chemo bus' with all its 'comforts' and catching another one soon. It makes me feel uneasy to get on the new bus with all the unexpected turns, but hey,  ce la vie. 

Smrlvr: Thanks for setting up the FB page and hope your fatigue gets better. 

Bec, inks: I hear you on the comfort level regarding the bc staging. I went to surgery thinking that no nodes would be involved so I could 'skip' rads. No such luck for me! I came out of surgery with not only the three tumours, but also positive nodes, extensive DCIS, necrosis and atypia! It was hard to swallow all of that info at once. 

The different staging doesn't change the treatment, but it sure helps one mentally!

Amazon - so sorry about your husband, he's going to need a lot of rest. I already had 5 rads. I could not do the lotions and oils since my hubby was gone and I was so busy, I was only able to lotion or oil myself in the evening. But now on the weekend I'm putting it on more often. I have calendula ointment, shea butter and emu oil. The curcumin essesntial oil will leave a yellow stain so I only used it twice. I do take my curcumin pills religiously. This is probably TMI but I poop in Technicolor now. Amazon do you know what type of radiation you will be getting? My baby is OK but I am sick as a dog, I even started the antibiotics.

I did not realize it before but even the staging of cancer is not an exact science. So much is left for the pathologist judgment. And even people with a seemingly same stage can have very different other circumstances (necrosis, LVI etc.)

If anyone wants a great non habit-forming sleep aid I can let you borrow my 2 year old. I bet you both will be tuckered out by 8 o'clock and sound asleep. I know I have no sleep issues, the only issue is I wish I could get to bed earlier.

Wally - good luck on Monday! I hope you will do great mentally since it is your last one.

Happy Easter everyone!

Amazon - I guess ideally I would want to lotion/oil 3-4 times a day. But I barely manage to do it in the morning and evening. My RO said nothing on the skin 2hours before rads so I take great care to wash it all off. My Ro told me to start curcumin a week before rads and continue one week after. And yes it's 6 grams total per day taken in 3-4 doses spread out during the day since it absorbs poorly. Taken every day not just during the days you have rads. As far as I have read I think the reaction/burn is pretty much inevitable and 75% get it medium to severe. I think the ROs just downplay it because otherwise people would be too scared to get rads. I think the medium grade is when you have dry peeling and redness and that should not be too bad, I could live with that.

Inks- Your daughter is adorable.

Amazon- I didn't know MM's grows on crocuses.  My husband always calls chocolate "fruit".  Now I know they do grow on plants.

I just received a call from Life Alert.  Ambulance took my mother to local hospital in her area. 

Happy Easter and Passover to all.