Starting Chemo September 2015; join us!
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Thank you, SF. And I with you all!! I'm so thankful for you ladies and hope we continue to ease each other's burdens.
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Cajun - I am so sorry your husband isn't handling this well. Can you discuss it with your MO or another provider? They might have ideas. (Last Tuesday, without any prompting, my MO asked how my husband was handling all this. I expect providers hear struggles from BC patients on this.)
Southern - <hugs> for hot flashes and cramps. I'm sending virtual ThermaCare pads. Regarding the weepies, I was sobbing on the toilet earlier today because....
I spent the vast majority of this holiday very painfully constipated. Then a few minutes ago the Poop Fairy finally visited. Thanks to whoever of you sent her - it was wondrous. It's still going to be a major bowel battle with Taxol constipation SE (as it was with A/C), but at least a few feet of intestinal content (ok, it just felt like that much!) moved on down the road.
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I hate my period during chemo. I had it before round 1 so now it came back a day after round 2. Started really light almost like it didn't want to start. Thought yay!! Chemopause already! But noooooooooooooooooooooooo. After a few days of teasing me it got heavy for 2 days and now it's trying to hang on light again. Before it'd be 2-3 days reg and that's it. This bloody sucks! I want chemopause!
Sorry if this is gross but you guys do talk about poop.
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grey, are you out yet? Hugs!
Lisa, how is your husband handling it all?
I can't shake the feeling I did this...my choices gave me cancer and now my children will suffer. And I may have passed this terrible disease on too! Nothing I ever do or say as a parent will make up for that. I am so angry at myself. And disappointed. And really, really angry.
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Cajun, you didn't do anything to cause this. No one can forsee this. Saying that I have been at the "I should have found it sooner, it's my fault" stage.
Sometimes I still feel like that. My hubby assures me that it was not my fault. I hope your hubby will open up to you or someone on how he is feeling. It sounds like he's blocking the fact maybe because he's scared of the worst case scenario. I myself tend to ignore bad stuff in hopes it goes away. Not this stuff of course
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Our Families, Friends and Husbands have a hard time talking about these things . Its sort of a "Had to be there" kind of thing. I talk to the counselor at the hospital at times just so I can let it out and feel understood and encouraged. My MO asked me at every appt if I need "Antidepressants" I don't want to tell him that really I just need to feel human.
I truly hope that today was calm and meaningful or atleast restful for everyone.
Tessu I am putting that quote on my mirror for inspiration. Sometimes Crying just has to happen.
minnesota: I come across as a big Crier online but actually in real life I am an analytical engineering type with a pretty stiff upper lip. this month my strength has been sapped. I have cried quite a bit and dragged myself along. I look forward to brighter days when I can try to keep my family and my friends laughing but its been a bit fleeting for me as well lately. Be kind to yourself. A year from now all this will be in the rear view mirror.
Artista I know you are trying to keep things private but I truly hope you have friends and support. I am sure you know what is best for you . I am sending cyber hugs too you.
Cajun I feel for your situation . I truly hope your little ones can sleep. I know that when mine were that young it just made everything that much harder. I am very much a need sleep person. I too feel sad about this wretched GENE and scared for my kids and scared for my future. You are not alone. You have a whole group of sisters right here feeling it too. Kiss those little ones and smell their heads. It will be OK.
El Tigre you have a sweet hubby I remember him posting. My husband tries to listen when I talk about all this but I know he is scared #$%#$-less and worried too.
Southern I was thinking of you today because remember how you bought a wig and your husband didn't care for it? Well usually I am not this sensitive but I bought this lovely Teal night dress that I wear because it is soft and floral and just makes me feel beautiful. My husband is in the dog house because he called it a "MOO MOO" and made me cry. He is a good guy but he needs a better poker face sometimes. Also he might want to keep his mouth shut about my appearance. That is if he ever wants to see this Brazilian look I am rocking he had better shape up!
Today I feel like I had a thanksgiving miracle. This last TCH kicked me down so hard I haven't left my recliner all week I haven't driven a car and I have barely gotten up to make the kids lunch one time. My 11 year old fed her and the 8 year old cereal/toast/popcorn all week. I have cried and been so down. Just my darkest I have been. Last night I told my husband not to worry about me for Thanksgiving. All food has tasted like ashes/Chemo all week. I just can't eat. Water has just been Wretched even. It is all I can do to get my fluid intake to flush this out.
Than this morning I woke up around 11 and got up and ate an entire bowl of salsa for breakfast. It was heavenly It actually tasted like Salsa. My husband had made an entire thanksgiving dinner from scratch with all the fixing. It was one of the best meals I have ever had. I praised him and thanked him and maybe even forgave him a little for his errant big mouth. I even could taste the pie!
There are so many things I might not take for granted again. Tasting food is certainly one of them.
Also thanks ladies for supporting my poop trials. Never since a bunch of 12 year boys got together have so many jokes been shared about this most challenging of circumstance..
Don't worry gals we will be shaving our legs very soon!
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I am having chemo first. Just finished the act which was 4 treatments 2 weeks apart. Will be starting Taxol this week ice a week for 12 weeks then surgery
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3times - I'm now two weeks into 12 weeks of Taxol before surgery. If you are new (don't remember seeing you before), welcome! This is an awesome place for support.
Exercise_guru - Great to hear from someone else who's normally the rational one in the room! Honestly, I usually go a year or more without tears. Now I can melt down... oh, any time! I accept this is a combination of chemo SEs and overwhelming emotions, but I sure don't have to like it. [grumpycat] I was thrilled to read of the return of your taste buds - that really was a T'giving Miracle!
Cajun - My husband is 64 and has had a couple of life-threatening medical events during which we both thought he was a goner. (Think ICU for five days with docs shrugging and 100% clueless on cause of condition.) He's philosophical, supportive and actually more positive about my longterm cancer outcome than I am. Agree with el_tigre: don't blame yourself. You did nothing to cause this. Care for yourself with gentle compassion. It's the best any of us can do right now.
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Absolutely don't blame yourself!
When I got my diagnosis I cried, because around this time last year, I was so depressed I actually begged the Universe/Creator to just take me and end it. Then I found a wonderful therapist who helped me turn my life around --- I was happier last June/early July than I have ever been. Then this aggressive cancer hit, and I blamed myself. I felt like my wishing for an end last winter got listened to, but not my later life joy --- and that once the Kill Switch had been activated, there was no way to turn it off. I've read about how depression can weaken the immune system and predispose to cancer, and felt that's what I had done.
But both my therapist and my Pain Clinic doc repeatedly assure me that nothing I felt or thought or did had anything to do with my getting this cancer; sh*t happens; just bad luck. It's taken months to get to this point, but I no longer beat myself up mentally for being so depressed last year that I wished for an end. My happy positive wishes are usually ignored; I doubt the Universe would take a special interest in granting only destructive wishes. Cancer unfortunately just happened
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None of us are to blame. I could sit here and blame myself for the poor diet I've had for years but then I see vegan marathon runners posting in the stage IV forum- so technically they did everything right. Cancer knows no bounds and has no mercy. I hate reading about pediatric cancer pts the most. Talk about a major heart break. They are the most innocent of them all, our children.
I had a peaceful day yesterday and hope you all did too. My bro was texting me every 2 min with a play by play text with photos on my dad cooking up a storm. He's a great cook. So I lived it from afar. Such a sweet bro I have, the only one in the fam I had to tell since he's in charge of my things should anything happen to me or he'd be in the dark too. I chose it that way. Didn't have the heart to absolutely crush their souls as they would rather die than see me with something like this. So it stays under the covers unless I'm stage IV and am told I have limited time.
Not spending a dime this year on all the black Friday sales even online. But next year! It's on!! Have a great day all!
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they won't give me treatment today, my counts are too low (WBC 0.9, ANC 0.2). I have to get 3 neupogen shots and come back on Monday. I'm trying so hard not to cry.
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Cajun - Cry all you want / need to. I'd cry too, it's perfectly normal to be frustrated over a delayed treatment. Hang in there, we're with you.
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Cajunqueen- I am finally out of the hospital- was out on Thanksgiving day. Sounds like you get the prize for lowest counts. I hope you feel better. They never offered me and neupogen shots while I was in; the counts just had to rise on their own. Found out I caught a cold virus- still no answer to kidney issue. Was sent home on antibiotics.
I want to get on the auto injector so I don't have to miss more work just to get the shot.
Please everyone, just give yourself a pass. Everyone is doing the best they can. What's a few tears, homicidal feelings toward partners, kids eating not so perfect. No kid has ever died of malnutrition from cereal, popcorn,etc,
Take it easy on yourselves. The more I try to do, the higher my temp goes. After $153 for boarding ,I have no more money for anything.
I just have to laugh- I was hospitalized because I caught a cold😝
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thanks, ladies. I just want this to be over. I feel the walls of depression closing in.
more prophylactic antibiotics. Also found out they are going to schedule rads 2 weeks after chemo and my ooph 2 weeks after rads. And tamoxifen for 2 weeks then the ai's/everolimus. How much can the body take in 7 months?0 -
LOL at homicidal feelings toward partners. Oh that's funny. Sorry to those who have such uncaring partners but that was funny Grey!
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Cajun: I will have had almost four weeks between FC and start of rads. that feels like much more of a break. I told them I wasn't available for simulation until after Thanksgiving and that guided the schedule. I'd speak up and tell them two weeks doesn't feel like enough, let them know how you are feeling, and ask why longer can't be arranged. It could well be that there isn't a good medical reason for scheduling so quickly but they may assume you prefer that (some people just really want to get it over rather than getting a break) unless you speak up. I think you should ask. It is your body and your treatment plan.
I don't know if this is helpful or not, but a possibly related (?) comment: it really surprises me to read that some of you only get nuepogen or nuelasta once counts go down, if at all. Seems like that is asking for trouble (or a hospital stay). I was told by my MO I would have neupogen regardless, and that it or a similar drug was the standard of care with my regimen. My counts never went below the normal range, and that made the SEs of nuepogen (which I found to be very manageable with one claritan and one aleve pill per day) worth it. I'd suggest that anyone not getting it routinely ask why not. It is expensive, so insurance could be an issue, but I was able to get patient assistance from the manufacturer for all of the cost that was not covered by insurance, except for $10 per round. All I had to do, literally, to get it, was to call an 800 number and answer three questions: one of which was whether I was on medicare, since apparently they won't give the patient assistance to those on medicare. So, I do think if it isn't routinely offered it is well worth asking the MO WHY he or she doesn't offer it. Especially this time of year, when, as Grey points out, with low counts it is quite feasible that one could be hospitalized with a cold. That is a damn expensive cold, sadly.
Hugs to all!
Octogirl
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Aww Cajun, my heart aches for you and anyone else that has had a tough couple of days. Hang in there gals! We are tough chicks. We got this.
I agree with octo. Cajun I'd question starting rads 2 weeks after completing chemo. My last scheduled taxol is dec 9th & was told by my that that they usually wait 3 weeks to heal & get counts up before continuing treatment. My port removal is dec 21 and the surgeon's scheduler wanted to do it dec 14th, which would be the mon after chemo. I said no & had them contact my mo office. My mo also said they usually like to give patients a break after chemo & start 3-4 weeks later for rads. My sim is scheduled for Jan 5th after the holidays, with rads starting a week or so later. I have learned that sometimes you gotta just push back and say no. We are our own best patient advocate.
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i was told to keep my port until after rads "just in case". Really?
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oh Annie I wanted the damn thing out before the end of the year. It was non negotiable in my book. Mo nurse was cute and questioned if I was going to keep it and I said heck no way. For me it seals the deal that chemo and this icky year will be over. I will not need it as no additional treatment after rads since TN. It's hope that slash,poison, burn will work to keep the cancer beast away.
Edited to add: plus my port is on the right side and I know that I will not be able to sleep on my left cancer side during rads. So out it goes.
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I agree with Octo. My MO and RO both are giving me up to a month between chemo and rads. I also have the option that in between rounds if I want an extra week, I can have it no questions asked. MO who is also a PhD in oncology says there is no evidence that states chemo every 2 weeks is more effective than 3. So I'd ask for what you want. And if they say no, I'd be curious to hear why not. I had a huge tumor with micromets in 1 node and grade 3. I'm being given the harshest chemo combos and still all this goes.
As for the port, I forget it's there. I can sleep on my right side just fine. I guess it depends on where exactly it was placed? I plan on keeping mine. I hate needles in my arm and the infusion center agrees to draw all my labs. Saves me from going to germy Quest as the center is much more sanitized. I know I will be monitored closely after txs as that's the way my MO is and don't want to go thru another port insertion sx. I used Emla cream over the port 2 hours before use and don't feel a thing.
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I have asked for neutrogen, but you must have a 2 week break between treatments to take it, so you must be DD. Going forward, they are going to check blood on Friday, neupogen if necessary, trx on Monday. As far as rads, they are very concerned about estrogen so the sooner I do rads, the better. My cancer was moving with a speed rarely seen and is 99% ER+
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exercise, I am sending big hugs your way from one scared mother to another. I have dark thoughts...I shouldn't be resting, because if I die soon, I will be angry about all those missed moments. I have trouble with discipline now, because I don't want to be remembered as mean mommy. I should pay the last of my student loans last because they won't go to my estate and my kids will need the house equity.
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Cajun- That's bull that you need to be on an every 2 week tx to get Neuwhatever. It's insurance guiding this. My MO wanted to start me off at every 3 wks AC but insurance wasn't going to cover Neulasta because some shit doc working for them thinks it must be every 2 weeks. Bet you anything he's no MO. MO got so pissed that she fired back at his ass until he admitted it was a policy with the insurance co and not a doc. So to get around it I started as DD AC with the notion that if a round is too much I can put off a week stating bad SEs and nothing insurance co can do because once it's been auth'd, done deal. I'm very fortunate I have a MO that knows her stuff and will call out those shits at the insurance co on their bullshits. Oh I hate insurance cos. They take all our money and give us grief when we most need not to have any!
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Cajun- none of this is your fault!!! Talk it over with your MO he should have some ideas that would help you and your husband.
Keep on praying, pray for you and pray for your husband. I have faith your husband will come around. Do not focus on dieing . Don't even think of that. Think of living. One day at a time. Enjoy your children.
You are in my thoughts and prayers! Hugs to you!
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Hiya ladies! I may be getting weekly neupogen. They're going to start drawing blood on Friday and if my counts are low I will take neupogen over the weekend and treatment on Monday. It's the Neutrogen on body injector that I was getting on the red devil that they said requires 2 weeks between chemo trxs. Hopefully this was the one and only delay.
I'm out of the rabbit hole tonight and thinking of you ladies and hoping everyone is having an uneventful night. Menopause is just getting to me, I feel so mentally deranged, lol. I'm enjoying the mindless entertainment if the Westminster dog show.
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Good to hear Cajun! I was wondering why it's not a routine. It's a given our wbc will go down. I love the dog shows too, especially the small dogs. I love animals and love watching Bad Dog on Sat ams on Animal Planet.
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As far as being routine, they were surprised my counts were so low. They think it may be the last remnants of the AC. They said weekly Taxol rarely causes such a hit and it's better for the body to to try to make the WBCs itself. Other than that, I'm not sure...money always does tend to be a factor with insurance. I'm just glad they are addressing it going forward.
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But our bodies DO make the wbc itself with neuwhatever. It's not like we are getting transfusion of cells. All it does is causes the bone marrow to produce the cells quicker. It's all about the money. I'm just glad my MO kicked ass and I can have it no matter what schedule I choose to be on.
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I think my white cells are recovering. Feeling much better both physically and mentally today.
I brought a counted cross stitch project to be framed; it should be ready in a couple weeks. I started it 24 yrs ago (! Yup!) and got a lot done, but then let it sit for almost a decade. Last winter I pulled it out and was surprised how little there was left to stitch -- so I finished it. And then, it took until now to bring it for framing... Finishing this project has been weighing on my mind since my BC diagnosis -- it would probably get thrown out if it stayed in my craft bag. Now I can rest easy that it will be up on the wall no matter what happens to me. I'll post a pic when it's framed.
This is for today:
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Tessu - Good for you! Finishing the project and getting it framed is a wonderful moment. And thanks for the thought - I needed it today.
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