Starting Chemo October 2018
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hello ladies! Well, today I am going to use the "F" word.....fartknocker. Insurance is already trying to give me a hard time saying the lupron injections my MO put a request for are not part of NCCN guideline methods. Unfortunately for those FARTKNOCKERS I have a copy of the latest NCCN guidelines and know for a FACT ovarian suppression is part of care when it comes to someone with my pathology. See my MO on the 9th for a teaching on Arimidex and Lupron, will be bringing the note I received from insurance company saying this request is "pending" along with all the other BS they put in there. Cheap ass bastards. I'm assuming I start my hormone therapy that day, Lupron will be different as I will be getting shot in the keester instead of my belly like I did with Zoladex. Menopause be kind to me!
I am healing more everyday from my mastectomy. Looking down to a flat zipper isn't so scary anymore. Can sleep on either side now, but more on my tummy if I sleep on left side. Thank goodness for no more drains!! After this week I get to start trying to get full range of motion on my right arm, will need that for rads. I had been stretching 90 degrees front and side a few times a day. Based on how thats going and that my arm wants to stretch up I think getting full range back won't be too hard. When I saw my BS's nurse for the first of the 2 drains to come out my BS stopped in to admire his work. He was pleased. When I was in the hospital the morning after my mastectomy before it was time to come home my BS stopped in to check on me. He checked under my ace bandage and decided right then and there he was going to re-wrap me....mind you, my breast surgeon is short...in fact his head hits my chest exactly where my boobs are...so when he was re-wrapping me it was interesting and he kept apologizing. I thought it was hilarious. But he really got me wrapped well and it was much more comfortable. He did a great job I'm healing well. See him again in 3 months.
See RO tomorrow for the first time for rads consultation. Nervous about that. Another step another hurdle...ugh.
Antigone - I so agree with the feeling alot like me but not being able to act like the old me. Church, a quick bite at Subway and a small grocery junket wiped me out yesterday. I hadn't been able to handle much more than doctors appointments, minor grocery shopping, and light housework for the longest time. I managed to mow the backyard yesterday and 1/4 of the front yard today. Baby steps, baby steps...its an assault on my impatience ...I want things to be NORMAL again...sigh.
Notgivingup- Enjoy the heck outta that drink you deserve it!
Doris- how are you doing post surgery? Everything going alright?
Annie- nothing like getting felt up for the millionth time by a random stranger huh? Wow that was a long visit, wonder if mine will be that long! I agree, you ladies are one of my biggest assets in all this. God works in mysterious ways and I believe he brings people together during the worst of times to help get us through those times...who else would understand but ladies going through the same things? You ladies have been one of my greatest gifts in all this.
Fritz- keep knocking out those rads! What do they have you using on your skin?
April- your married to a little pill now for awhile - lets us know how that relationship is gonna work out! Isn't that crazy how this works? Poison us, scorch us, and now it comes down to a teeny weeny pill.....irony...
Hope your all doing well!
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Rabbit (et al):
I just wanted to share something that a work colleague (whose mother is dealing with TNBC right now) shared with me yesterday about how we feel vs what we can do.
"Some of the hardest times for anyone with a chronic illness are the first 12 months after treatment. Because everyone wants to get right back to where they were, get right back to normal. But there *is* no going back. There is only finding a new normal."
Also, what all of us with chronic illness need to recognize is that it's "normal" to grieve the loss of our old normal, the loss of our old "us." But that doesn't mean that things won't get better.
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Rabbit, so glad to hear you’re healing well. I’m impressed you were able to mow some of your yard!! I can definitely see how you’d be wiped out after all that! My insurance denies the Lupron injections. My hospital said that most insurance companies have been denying it for their patients, and they’re surprised when one gets approved. So until I can have my ovaries out I’m stuck with Zoladex every month.
Antigone, it’s so true that we need to get used to the new normal. As much I hate it
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Rabbit, I was told to just use pure aloe. They said I could use Miaderm, but it’s really expensive so to probably wait to see if I need it later on.
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Rabbit & Annie60 I’m doing ok, but after being so up for so long during chemo, etc. I am not feeling the joy I should be. Physically everything is falling into place, but I just want to be alone. This stupid neuropathy is still going strong & troublesome.
I did get flowers from some dear friends yesterday. That was a great surprise & totally great!
Hoping tomorrow I will get rid of these drains. It’s been a week today. My taste is coming back more, but still have a strong salt taste.
Doris
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Doris - I understand. I just want to go to bed and not get up. You would think after completing A/C and T, I would be over the moon to be done with chemo. I guess the blues from T are hanging on along with the neuropathy, fatigue and the salty taste. With rads looming, it just feels like this is never going to be done. My MO has said I would "heal" for 4-6 weeks before starting rads. The RO said two weeks. He didn't think waiting would make a difference. Part of me wants to go ahead and get this done. I hope to be through before my granddaughter has open heart surgery this summer.
Our new normal - I wonder what it will be. Will the fatigue ever be better? Will I ever feel my fingers and feet again? Will joy be part of my vocabulary once again? I say YES!! This too shall pass and our new normal will be a full life with the ones we love.
Annie
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Today I would like to talk about blood pressure. Oh Rabbit, you'd like your drains out today, lets take your blood pressure. Oh Rabbit, you want to start rads, lets take your blood pressure. Rabbit, you coughed, let's take your blood pressure...what's your name and date of birth again? Which arm?! AHHHHHHHHHHH!! You know the thing I will probably be most thankful for? Not getting my darn blood pressure taken every five minutes!
Okay, so I met with the RO, nice guy, short like my BS so that's funny. Gave me the classic dr oncology feel up and said I am healed up enough to start rads. Explained everything - said I will be getting 28 treatments and 5 boosts to the tumor bed. Same as everyone else pretty much. Simulation is next tuesday, and then I wait for the call after all the planning is done to get started. Aquafor, Aloe and Eucerin were the skin treatment recommendations - will be picking up all 3. My RO had me try to get my right arm above my head today, I was amazed I was able to get it completely above my head the first try. Dr joked with me that I looked like I was in pain, I said no, I was just nervous I didn't think I could do that so soon, I was surprised!
I joked with the nurses and the NP as they were explaining about the machine/process etc that the rads machine looks like a large standing mixer and they laughed and said thats a good way to look at it and it really does look like that. They said the machine is open, I won't feel anything, see anything or hear anything besides music that they play on the speakers for you to help relax you ...sounds good to me, I'm gonna ask for some 80's music and try not to dance off the table! Mowed another 1/4 of the front yard today. Enjoyed BOGO Boston Market on the way home from rads consult with hubby. Am enjoying the greenery and the sunshine...mowing my lawn...spring....I thought it would never come but it did...now I just need that lemonade and spring will officially be here!
Doris, I hope you feel better soon - this is all alot to take, a seemly endless parade of assaults on our poor bodies...It will get better for us!!
Annie- the blues seem to like to stick around after chemo ends, it takes awhile for the cloud to lift alittle, sometimes I have to keep remembering what we put our bodies through. It takes time to get back to "normal". You, I, Notgivingup, and Patrice will conquer rads together!! Let us fry together like the hot chicks we are
Fritz, thanks for sharing what was recommended, kinda what was recommended to me too. Good to know about the lupron situation. I still say cheap ass bastards! Hope rads is going well!
Will let you all know how hormone therapy teaching goes tomorrow - I may be marrying a little pill and a little pellet soon
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MI saw the surgeon today, got my drains removed & was released from his care. Said I can do whatever I want, if it hurts, don't do it! When he removed my drains I did have to curse. Damn that smarted, he had me take deep breaths & strong blow out. I had to warn him about taking out the third drain as my knee was positioned right in his crotch! I told him if I jerked my knee he would be in a world of hurt! 😄.
They got all of the cancer, lymph nodes were clean as were the margins. Looks like no radiation will be forthcoming. I see the oncologist in two weeks. I will have to take the hormone killer pill for a few years. Hopefully I will not not have a recurrence.
Doris
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Doris, congrats on the great pathology report!!!
Rabbit, I’m with you about the constant blood pressure taking. And the birthdate!! For rads they literally have a picture of me on my chart in the computer, but they still ask me my birthday every single day. I know it’s just protocol, but for once could they not? I’ve said it so much I’m beginning to second guess myself when they ask and forget for a split second! Blame it on the chemo brain.
Rads are trucking along. I’ve done 13/33. My skin may be starting to turn colors but it’s hard to tell. I’m really tired these days. I don’t know how you ladies that work have been getting through treatments. Total respect to you!
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Can't sleep tonight - took one to many naps today.
Doris - YEA!! I am so glad you are not having to do rads and glad the drains are out. Let me know what pill they put you on. That will be my next step.
Rabbit - our simulation is on the same day. I have HP the next Tuesday and an echo sometime that same week. One week without a doctor's appointment would have been nice. Hot chicks! I like that!
Fritz- I so agree with you. If I was working now, I would be worthless. You women are amazing.
Annie
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Hi all,
I've been enjoying reading and catching up on everyone's develoments. Sounds like things are moving along for you all! I'm still dealing with the ear ringing stuff I wrote about before - honestly, it kind of sent me into an anxiety spiral and I've had a rough month. My damn body is just so war torn it's hard for me to know what is normal healing and what I should be worried about...so I just worry about it all. I've been having some neck and low back pain recently - so that is my new anxiety driver. Of course, I know that stress causes me to have neck and low back pain, but i just can't keep my mind from going to the worst possible outcome.
Also continuing to deal with joint pain. That was my worst SE from chemo - I was hoping it woudl get better, but it's still hanging on. I had my ovaries removed at the beginning of this whole ordeal, so now wondering if this might be from menopause?? Ugh. I start rads on Monday.
Amber
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Amber, I’m right there with you in the worrying department. I obsess over every new ache and pain. The joint pain you have could definitely be from the lack of estrogen in your body. I know that’s a SE from the AI I’m on. Good luck with rads. It gets old quickly, but much better than chemo.
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For the past three days, I have felt terrible. Chills, with my teeth chattering, fatigue equal to that from A/C and just a general feeling of feeling like I just want to go to bed. Today, when I woke up, my husband had me take my temp. 101. I was actually relieved. To the doctor we go. I have a sinus and ear infection. I am so thankful that none of the things running around in my head are real. Will we ever just pull a muscle, have a headache or backache and think nothing of it? Probably not.
Annie
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Hello all tonight I would like to talk about reality. Not the "new normal" phrase we have thrust upon us, but what has become our reality the moment we opened that fridge and stared that mountain lion in the face. Lately I have been coming to terms that this disease is going to provoke all kinds of feelings in me and not all of them good feelings. I will have those mornings when I will wake up feeling like my skin is a nervous ball of energy and I feel like I'm going to crawl out of it and I'll have those mornings when I clutch my warm blankets to me enjoying the feeling of being comfortable in my bed and that while I'm not 100, I'll get through the day. I still haven't been able to get those 5 positive nodes out of my mind. Any ache or pain anywhere has me on edge. I keep thinking if I had surgery first maybe those nodes wouldn't of been positive. I guess I could play that "what if" game all day, the fact is I made the best decisions I could with the information I had. I have to keep reminding myself of that. A 7 generation surviving family circus that travels to our area every memorial day is coming again....it will be our 6th yr attending and it always cheers us up everytime we go, nice funnel cake, nice glass of fresh lemonade...wonderful! Looking forward to that
I've been penny pinching like crazy as everyone knows cancer is expensive, the co-pays, the prescriptions, all the pallative stuff we have to buy to get us through crap....but i did get myself a few pretty maxi dresses for summer. Thinking I'll be able to model them with a crew cut in a month or two I am nervous about starting radiation - I have my simulation on tuesday and right afterwards I head to the MO to get my first lupron shot. My MO has decided that I will only be doing the ovarian suppression part during rads, once I am done and healed from rads then I get to add in Arimidex. My husband made a joke that we should marinate me like bbq ribs before they stick me under the rads machine...then he was humming that "I want my baby back ribs" song while winking at me. He has his ways of trying to get me to look at things differently or at least trying to get me to laugh about it!
Doris, LOL about the drains, well thank goodness you warned him, coulda turned your surgeon from a rooster to a hen
Congrats on great pathology!Annie - how are you feeling? Better? Sleeping better at night? You and are both in simulation on tuesday, I wonder if we will start rads the same day when it comes time?!
Fritz - I hear ya. I got snippy one time and just said my last name and date of birth without them asking once. Even thought about refusing to get my blood pressure taken for once too. Because I absolutely hate it. I've gotten snippy more than a few times and I've felt bad about it every time but honestly, isn't it okay to be annoyed alittle bit? Not that my nurse has to feel the brunt of me being annoyed.....not her fault she's following protocol. Glad rads are going okay, thinking of you as you go through it and hope skin holds out for you. Almost half way done, woooo!!
Amber- good to hear from you again! I agree its hard to distinguish whats normal and what we should be suspicious of. I hope rads goes well for you!
Love to all you ladies
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Hey Rabbit! I am still running fever and no one knows why. MO drew blood, chest X-Ray and other test. So weird. I have a new antibiotics, so hopefully it will knock out whatever is going on. How did your simulation go? Mine went pretty fast. They will be doing rads on five areas. I start on May 29.
Hope everyone else is doing OK. Doris - are you recovering well?
Annie
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Well, today was a busy day! Today, I had my simulation, well one of them, they are making me do 2 different ones before I start. This one I got scanned twice and got molded into that inflatable thingy, I was so happy I could reach the bar comfortably with my right hand! Took 3 minutes tops. After they make the computer drawing which will be in a few days I get the call to come in and have chest X-ray/pictures and verify everything is good and then the following day I start. I'm guessing all this will take place next week...things moved quickly! I was given a bar code card I can scan and check myself in from now on - change into a gown and then wait in the waiting room for them to come and get me. Cannot believe this part is actually about to happen....very scared...I don't want to burn badly.
The other exciting development is that I got my first Lupron shot today. Yes, insurance covered Lupron! I was shocked! Apparently my MO made a very big stink so I could get it. I had to go into the infusion room to get it and found myself in a familiar chair.....(burn it...kill it with fire!!)....After my vitals were taken, my nurse that day who was a guy had me stand up. I asked him how he'd like me to do this. He told me just expose the top part of the area (butt)...and I added with a smile "and bend over?" he laughed blushing a bit...and said basically yeah. My husband made a joke while the nurse was giving my butt an alcohol rub down..."Now how could we make this shot better I bet those guys in the lab were thinking...oh yeah..let's have them give it to them on the butt!"....My husband then teased me because I didn't make any noise with the pinch that i should of went "Owwwwwwwwwwww!!" lol ..with that little pinch thus begins my menopause countdown.
I have been having a horrible time in the mornings. I am sleeping okay, but when I wake up, its like I wake up with a panic attack, my skin feels electric and I have to do alot to calm myself down. This seems to happen alot more when new steps in the treatment process happen. I have decided when this happens I am going to get up, make me some mint peppermint tea come back to bed and slowly sip it, and try and sleep alittle longer to train myself to not be so tense waking up. I get the Bigelow Plantation Mint tea and Mint Medley tea (highly recommend it for relaxation) I drink it straight with no milk or sugar....awesomely relaxing when I remember to drink some. Why do I wait til I am like this to be proactive?! I have some in the cubbard specifically for this and keep forgetting to use that tool in my arsenal. I got some lavender aromatherapy roll on as a gift - I put it on the top of my hands. I sleep with my hands near my face so I can smell the lavender while I am settling in to get some zzz's. Helps to get me to sleep.....just need to be able to wake up without feeling like a cat that's been thrown into a bathtub full of water that is desperate to get out. I cannot wait to get on the other side of this...I'm emotionally just about spent...once I am done with this I will have been battling a full year...I'm ready to take my pill and go home...but not yet...one more hurdle...
Annie, my goodness, what the heck!! Hope that new antibiotic does the trick. I think I'm having that many areas done too but I cannot be sure. I need to ask at my next simulation. I know chest wall and lymph nodes are being done but I cannot remember where else.
I think Notgivingup started rads today. Amber started yesterday. Fritz is knocking them down. Annie and I start soon....I know Patrice has to be starting soon...April and Casey finished... I think Frmthahart is about done too...man...we're plugging along. We've come through chemo and surgery together...WOW...we've come such a long way!! Now to get us all over the rads finishline
Love to all of you!! 0 -
I had a good Mother’s Day, kids came over with food so I didn’t have to do anything.
I wanted to shop yesterday so we went out, big mistake! It was raining, windy & bone chilling cold. I was feeling really bad after that. Really didn’t do any shopping, I just wanted to cover up & sleep. It was an achy day.
Still no improvement with the Neuropathy & I’m still having shocks in my legs & feet. I want to feel like my pls self, but I have a feeling it’s going to take quite awhile to get normal.
Getting people to understand that I’ve had surgery, chemo & cancer is gone, but that doesn’t mean I’m a-ok yet!
Doris
Hoping all are good as they can be
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Good Morning!
I am doing pretty good here. Hubby and I went to dinner on Saturday. We enjoyed a nice bottle of wine with dinner. We were celebrating my finally finishing chemo. We had a wonderful time.
We are getting ready for a camping trip this weekend. We go every year and I refuse to let cancer/treatments keep me from going.
I start radiation on Friday. I have been moisturizing this past week. I am a little anxious about it. I think it's the fear of burning, blistering, and what not. Looking forward to being done with it.
I hope everyone is doing well. Let's all become "hot chicks"!
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Well I just hit the halfway point of rads yesterday and I can now clearly see where I’m being treated vs not. My armpit is starting to look pretty red, and I’m most worried about how that skin will hold up. Another fun thing that I have no idea if it’s related to cancer treatment is I’ve developed what I think are styes on both of my eyelids. They hurt and feel like paper cuts. I feel like my body is falling apart.
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Ladies I'm freaking out! I had radiation as usual this morning, and when I was putting on aloe before getting dressed, I found a lump above my collar bone. I immediately had a nurse feel it, and they were able to flag down an RO to check it out. I broke down in tears. The RO says it's probably not anything because it's within the radiated area, so cancer isn't likely to grow there right now. He said it's also a good sign that it's movable, and a bit painful to the touch (though now I'm wondering if it's painful because I keep messing with it.) It may be a swollen lymph node reacting to an infection (I mentioned the stye in the above post) and I woke up last night with a stuffy nose. My RO will take a look on Friday. When will this ever end!? Last night when I found the stye I was convinced the cancer spread to my eye. Now I'm convinced it's in my subclavicular lymph nodes!
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My Fritz
Shit. Well, I will say this on the positive side, GOOD ON YOU for being super aware and proactive. And thank GOD an RO was able to be flagged down. Try and look at like this...i know your mind is going places but try...mine would be too, I get it... its in the radiated area and its a spot currently being treated...one of your lymph nodes might be pissed off its being fried....could be a little blister getting ready to happen too. The fact its moveable is good. I know you described before your skin being really red, so the area is really irritated, which makes me think its a skin reaction. I'd argue to be seen by the RO TOMORROW just in case even if only for your peace of mind....I wouldn't accept waiting til friday to be looked at since you'll be at treatment tomorrow anyway. That's the thing I hate about this disease, you don't ever feel like you can put your guard down...every ache and pain can send you reeling and worrying about the worst. Breast Cancer, the diagnosis, the treatment etc is harsh, the effect it has on the mind and our emotions is just as harsh. Hang in there My Fritz...*Biggest hugs imaginable* I hope this helped just a tad...I know how your feeling right now 0 -
An update on my eye thing/lump above my collar bone: When I went in for rads, I asked if I could see my MO to have him check me out. He's at the other office today, but I was able to see one of the NPs. She was so incredibly sweet. The first thing she noticed was the bumps under my eye, and then felt around my collar bone. There's definitely a pea-sized lump there, but it's tender to the touch, and easily moveable, which points to an infection of some kind. In fact the entire right side of my neck is tender. She ordered a round of antibiotics and hopefully that will clear things up within a week. She also said that there is a slight possibility the infection under my eye is shingles. I'm to let them know when I get there tomorrow for rads, and she and my MO will hunt me down to take a look again. So after I saw her, I went to rads and did my thing. After I got dressed and was walking out to leave, I ran into my RO's nurse and she wanted to see for herself what other nurses had told her from yesterday. She felt my lump, and immediately said "oh, that's not cancer." So that made me feel a bit better. Of course there's always the possibility that it IS a cancerous node because no one can give you a definitely answer when it comes to this shitty disease , but everything is pointing to it not being positive, so I'm hanging onto that until someone tells me otherwise.
Lots of love and hugs to every one of you ladies today.
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I never thought I’d ever be so happy to be told I have shingles. My MO diagnosed me this morning and put me on an antiviral. I have to miss my friend’s bridal shower tomorrow now though. There will be babies there that are to young to be vaccinated against chicken pox, and you never know who else may be immunocompromised in public.
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Hello all. Well as many of you in the facebook group know. I am Stage 4 now...Mets to Lumbar spine, Thoracic spine and Sternum were found during scan for planning for rads to my right breast. That of course now is off the table. I am doing rounds of diagnostic tests to check extent and if organs are involved. CT/Pet, Brain MRI, Lumbar MRI, and Bone Scan. To say I am shocked and overwhelmed would be an understatement. My husband, family, and community are encircling me. MO said her gravest concern is all this grew and spread during active treatment and that it survived AC-T. Additional chemo doesn't look promising. Waiting for everything to come back after I have the rest of my tests done next week. Meet MO on June 6th if not beforehand to discuss plan of action...
You know, shortly after I was diagnosed I was reminded of the scene of Patch Adams. Will link below. It was my way of putting a little humor spin on it. This has been a true test of faith for me as I am a Christian. Somehow being in the place has been in the back of my mind all this time...now that I'm here..its such a strange feeling. Husband truly is amazing, I cannot say enough about how he has been with me these last 48 hrs. I am so very blessed. Chemo didn't work. My cancer spread. But God is still good.
Fritz - I am so SO very happy for you. I hope things continue to plug along with rads even despite the last couple hiccups. Thank goodness for shingles huh? lol.
Notgivingup- hope your first rads went well! Thinking of you!
Will update when I get more info on whats going on with me. Meanwhile, I will try and be supportive of you all as you battle rads and hot flashes
Take care all
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Oh Rabbit, what can I say at a time like this? I so hate this fricking disease, it attacks with no rhyme or reason. Just know you are loved & cared for by your family, friends & those of us on this forum. God bless you my dear
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Started radiation today. One down, 19 to go.
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In the chair at 7:45 for HP. Hopefully, the absence of T, will make this easier. Starting rads a week from this Wednesday. Makes me tired just thinking about it.
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Sending love and prayers, Rabbit!!
Notgivingup - you got this! It will go quicker than you think.
Annie - I have found HP to be much easier. Some women on the boards have said they have terrible diarrhea. They have nicknamed P poopjeta. The biggest situation I have from it is terrible gas for a few days. I also have a drippy nose, mild acne and slightly brittle nails. It is doable. Good Luck!
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Rolling over poopjeta! No reactions today - had one previously to P. Easy afternoon. MO says this should be easier than with T. Yeah - he said T was going to easier than A/C. It was different, not so much easier. On the last part of this treatment plan. I'll finish. Thanks for the encouragement.
Annie
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Annie, glad you didn’t have any real thins today. Let’s hope it stays that way.
Rabbit, still thinking of you.
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