Calling all TNs
Comments
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Toby, You look Great! And I love that cap and halo. Did you find that online? I see there is a site recommended by BCO...I have a BIg head...am wondering if stuff I order online will fit? See, these are the things I don't mind worrying about. lol
arlene
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greenae= If they give you neulasta take a claritin the day before and for 5 days. I took with an Aleve. Helps with bone pain. The neulasta shot was nasty. Hated it more than chemo. No,I hated chemo as much
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oh ya and Arlene, your insurance may cover part of the cost of your wig if dr writes a Prescription for a cranial prosthesis, but you may already know this as you've used that term. Also the am Cancer society has hats and scarves that you can borrow or take as well as wigs. You can get 1 from them for free, I actually took a few and then returned them after treatment. I kept the ones I bought. And look into the Look Good feel Better class at ACS. Best for after you've started treatment. Wig and scarf tying tips and free makeup, good brands too
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Thanks eileen. Oh-oh, Neulasta? Something else to look up! I am keeping these helpful hints in my notes. Thank you!
Thanks, Lisa. Good info to keep in mind for when the "party" begins. Gotta get cleared in next couple of weeks so I can schedule surgery. It seems my surgeon is planning on taking a big chunk. My mass is at 10:00, so I guess I will be having bra, bathing suit and clothing issues. I will be quite lopsided, she said. ugh. More to think about and plan for. It's ok, I 'd rather know what to expect.
and yes, I will be getting an Rx for the CP. Every lil bit helps0 -
Thanks so much everyone for the kind thoughts!
Meadow, I kind of wish I had left it in after all that...or at least let my breast surgeon remove it since she was the one who put it in and did such a nice job with the incision. It was flat and she used glue to close it, no stitches. My PS removed it and the incision isn't as pretty anymore since he closed it with external stitches. I didn't have any issues before it was removed. The infection set in about 12 hours post-op, before I had taken the bandage off, so I'm thinking the bacteria got in during the surgery in the OR. It ended up to be strep. I had no idea you could get a strep infection anywhere other than your throat. But yes, I had a superficial blood clot and hematoma at/near the site as well - both were due to the port. So who knows, maybe it was best it came out anyway!
Great pictures, ladies! Thanks for sharing!
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Arlene,
We have all been there so you will get lots of support. Like you, I have been putting on a brave face but there are moments when I am falling apart on the inside. I find that I am more irritable with my family and I have no patience. I think I get mad because they are not responding like I want them to but then again, I don't really know what I want them to say or do. I know that really doesn't make sense but I have been spending more time alone in my room. I am anxiously awaiting Tues as that is my first CT infusion. I am as prepared as possible for this. I am very cheerful around my mom because I don't want her to worry about me.
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Speechmom, perfectly understood by us! Ally and others, continue to lift you up! I am hopeful my counts stay up high enough for treatment this coming Friday
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Greenae and Speechmom, - keep thinking GOOD thoughts! Chemo is not fun, but is surely do-able. If side effects bother you, be sure to tell your dr. There is so much out there to keep you feeling ok. If neulasta is needed, then yes, take claritan! I never had any pain from neulasta. I took claritan once/day for 10 days.
Speechmom, - I can imagine how hard it is for you with your Mom. I had lumpectomy and chemo and rads 14 years ago and never told my Mom at all. I did not lose my hair then, and somehow managed to keep it from her, but it wasnt easy.
Ally, - keep feeling better!
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OH YES...Speechmom...I understand completely. I am having the worst time with my husband. It seems he says all the wrong things. But he probably doesn't know what to say. Sometimes I am on the verge of tears, and sometimes I want to throw something.
(I actually did throw one thing, and put a lil ding in my refrigerator- It will forever be my IDC dx day ding-ugh)
Ally, I hope you are feeling better, and toby...prayers for your white count.
Speechmom, I wish you the best for tuesday...the anxiety is the Worst...I can't shake it. And it's mounting as I get closer to wednesday (mri), and then the waiting for results, and more tests and results.
And I have another question...does everyone get a port?
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Not everyone does but I did. It was placed during my lumpectomy surgery. Everyone tells me that I will be glad I have it but I hate it when my hand brushes over it and I can feel it under the skin. It's a constant reminder, but then again, so is my scar. I keep telling myself that thus is all temporary!
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yes, speechmom, I have heard I should ask for a port. There was no talk of it being placed during Lx, tho. And that makes sense to me. Adding to my list. Sigh
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greenae, my mass was also at 10:00. The incision is about 3 inches long and isn't covered by my bra but looks surprisingly good. The one silver lining in this location was that my surgeon only had to make one incision to remove the mass AND the sentinel node. Surgery was over 3 weeks ago and my breast is still swollen slightly. No pain, just tingling feeling at times. I guess that's from the nerves being affected.
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speechmom, I am glad to hear that! I guess I always expect the worst, then am pleasantly surprised wnen the result is better. I won't mind a scar, am worried how lopsided, or deformed it will look. But no control over that, so I will just have to trust my surgeon will do her best. I am glad to hear you are recovering well! I wish you An easy as possible chemo.
Arlene
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greenae=I did not get a port and had no trouble at all. I have no idea what chemo you are doing. I did 6 rounds of cytoxan and taxotere.. Good luck!!0 -
hi eileen I was told it will probably be ACT. No details til after surgery and final path report. I will definitely ask doc's opinions. i wouldN't mind skipping a port.
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greenae - If I remember right, it was the "a" (adrimyocin sp?) in the ACT that really made the port necessary. Your oncologist will be able to tell you for sure.
Kathy
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Hey all: I did not have a port either: did two rounds cytoxen / taxotere, three taxol and now 5 CMF with no problems: I do have good veins though
Hy Dh has been GREAT, but I gotta say I am glad when it is Monday and we both go to work. There are times he feels alone (we are empty nesters with twin s in different colleges)--- but I tend to just be quiet when I don't feel well, and want to be left alone with my dog, remote, and in my robe
the very first Sunday after I had to get a nelasta (sp) shot to bring up WBC and because I was on that earlier chemo, I was crying silent huge crocodile tears. He kept asking Is there anything I can do?
I finally screamed: through crying/ My mom always said, if you cant say anything nice, don't say anything at all. Then I followed with a brilliant chemo brain statement: " and thats &&^^ brilliant isnt it! "
Oh my. He snapped once at me. I gotta give him credit. Once since September and it was because I said I wanted eggs for dinner, and halfway through I said I could not eat them.
Our boys are wonderful, when they are home. They were able to go to chemo with me once, the day after Thanksgiving. I think they felt a lot better knowing it was not horrific.
We will be with you all every step of the way
Kath
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Hi All, Oncologist said it will be Adriamycin, Cytoxan and Taxol for 3-4months, unless the LX path report shows something different/better than she expects. Boohoo...don't like what I know about adriamycin. So I am thinking if a port is offered, I will take it because I will only be able to offer my right arm/hand for the adriamycin. I am an RN, the Worst kind of patient--well except maybe MDs...lol. I worked in the ER for many years, now with PreK kids....not much chemo in either of those areas. Good news today is I took 0.5mg xanax to test how I feel, and to see if it will work for Wednesday's MRI...Feeling pretty calm...maybe I will take it everyday til I get the results--haha! I am so afraid something will show that will change the LX plans. I don't know if I can wrap my head around crummy results?
And Husband is blowing a gasket because I would prefer that my sis take me to the MRI. I have a State mtg in south Jersey wednesday, and it just makes more sense for her to take me, as her house is closer and I can just go there straight from work. Of course husband says I don't "Need Him"...and maybe he should just move out. BIG UGH. Oh, the Drama. Can't I just make my own decisions. I need him to fix some things around the house. We have No Bannisters! I am thinking they will be pretty important once I start chemo, or even after surgery? A ride to MRI from my sis shouldn't make him feel jealous. I am always having to Be Brave, put on the Happy face, Go to work, pay bills, straighten up house, take care of dog and young adult kids...can I just pick my ride to the MRI? Ok, I am ranting...going back to "xanax calm."
Thank you for listening, and your advice and support
Getting in bed with some counted cross stitch and my dog...
Thank goodness I found all of you!
arlene
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Arlene, take a deep breath (and a xanax if needed
). Our husbands arent sure how to react, and have a lot of emotions to deal with, even if they dont acknowledge it. I am sure our situations are hard on them, too. Although maybe not your first choice, be glad that your husband wants to take you for mri. (Some husbands disappear, and dont get involved enough!) I am sure he will understand why this time it makes sense for your sister to take you. Tell him there will be lots more appointments that you will need him for!
As for the port, - I did have one put in for ACT. It was ok, and surely made the chemo treatments easier. I had it put it on May 1, and had first chemo May 2. i used Emla cream on it for the infusions other than the first, which still had steri-strips on. Using the port was much better than having to find a good vein.
Hang in there. You'll be ok!!
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greeae I also had a port as my veins were hidden. I am so glad I did. The first chemo they tried and tried before they finally got a vein but that was it afterwards, a port it was. I used an EMLA patch one hour before infusion and didn't feel a thing whereas my hand hurt like mad after trying to get the needle in. I had the port out quite a few months after treatment finished and they used a local anaesthetic and again didn't feel anything when it came out.
As for hubby. You could tell him that you will need him for the more important treatment and as it's only an MRI you thought you would give him a break and get your sis to go with you. Bless his heart for caring so much though. As AnotherNYCG said some don't stick around or make you feel terrible that you have got cancer and that you are a burden to them. I must admit I couldn't have got through it without my old feller though. He never missed an appointment with me. May be he could finish the bannisters while you are gone lol.
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there's a book called The breast cancer husband which may be helpful for you and him. I have hubby problems too and he is very devoted but just doesn't/didn't know the "right" things to say at times or sometimes would say nothing at all which felt just as bad at times. They ARE going through a lot too, different things.
Regarding doctors visits, Record your visit with the first doctors so you can review them once at home. Ask your doc first, they should say it's fine. That was invaluable for me and hubby so we could talk about what we each heard, or thought we heard.
I had AC then taxol. I had a port. It's not too bad and will save your veins and it will be removed when done and not needed anymore. It will make adriamycin easier and safer. You'll get used to it then it will be gone, along with your cancer!
You may be trying to understand and take everything at once and andyour head is just so full of so many things right now. Try to just deal with what you need this week Try to practice or learn some meditation or yoga to relax, easier said than done, I kno. I used a web site called doyogawithme.com and did the guided meditations. There is one for breast cancer. I listened on my iPhone with headphones when I felt like I was loosing control which happened often as well or to refocus or distract my brain. Ask about a support gp or a SW available to help you through the emotions. We are here as well of course and we are awesome!
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Thank you all for the port and Dh advice. I will ask for a port, and remember the EMLA. Flushed many a port in the ER, and so much easier for labs.
As for the husband, I have "Stand By Her" ordered, and going to look for "The BC Husband." Thank you for the recommendations. I have a lot to learn. My husband is retired, and I keep trying to get him (long before this BC!) to fix things around the house. Now I NEED HIM to fix things. So I will gently remind him. And I will read a book about him, if he will read a book bout me! Fair Deal!
I did take notes, record, then transcribe the recordings of my visits with the surgeon and MO. Here is an example of husband-wife talk after the vist...Husband says, " Wow, I'll bet ur happy with what the docs said?!" Wife (me) says, " Happy? Happy? Oh sure I am happy to have a chunk of me cut off, be sick for 3or 4 months, then radiated for 6 weeks, then more surgery to fix what got mutilated!" So, both of us need to figure out better ways to talk about all of this. I am hoping the books help. I am exhausted with my "regular" life, and this waiting and worrying just compounds our problems. He downplays everything and won't listen to my fears or feelings. He doesn't want to talk about it, just wants me to be "normal." Totally doesn't get the whole life-altering feelings going thru my head. And I don't know what he is thinking. So we have to work on this.
I know I am hyper, yoga would probably do me a lot of good, going to look into that. And also will try to slow down my brain! Guess my personality is why I like to Spin. Thanks everyone, i really appreciate your thoughts and advice
Arlene
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Greenae= I took my BF to NO appointments.Oh,he went to one that I need a bone marrow biopsy. Did not need test and NEVER took him again. Went with friend for the first of each appointment. She is a hospice SW. Then by myself for all the others. I am a nurse and he would have made me nervous and I did not feel like explaining what the MD said. I wrote down questions in a book and then in appointment made notes. That worked for me. I realized I did better by myself. Everyone has to find what works for them0 -
thanks, eileen! Yes! I guess i feel he is making me nervous, too. And i feel his questions can be answered by me. When he was asking questions last week I felt like it was taking up time I wanted to use to have my questions answered. We had a little talk last nite, i was calm because of the xanax... Lol... And I am hoping he will understand me, and i will try harder to understand him.
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Greenae, yoga is my go to stress relief.
Yoga is a mind exercise in patience & understanding as well as exercise for the body.
I try to practice ahimsa, "no injury at any time for any reason, including in word or thought." So, the practice of ahimsa is not only to not hurt anyone or anything to the best of our ability but also to not think hurtful thoughts. When I practice ahimsa, I need to eliminate injurious thoughts, potentially judging or critical thoughts- not only of another but of myself as well. That is the mind part........doing that while trying the physical exercises with that mental attitude.
There are many types of yoga. Please any lymph nodes removed "NO HOT YOGA". The one I enjoy the best is Yin Yoga. Slow steady pace & holding poses for 3-5 minutes. (If can..remember ahimsa here too!) I come out of class calmer, yet energized. I try to keep my head into today (now); not past- what could I have done different, or future- if test/etc says then what (don't borrow stress).
Hard to do but gets easier with practice.
Meditation helps too. This can be many ways. Standard, sitting saying mantra or meditate on a flower or a piece of fruit. Orange for example, notice the skin, Outer protective orange in color, just inside the white pulpy spongy part right next to the juicy part of the fruit. And the juicy part itself, the little segments of the orange & how delicately put together it is. Sounds weird but very calming.
In the practice of yoga please pay attention to the breathing. During exercises you must breathe in, then exhale at specific parts.
A beginners class is best. If think you'll like it, ask instructor questions. Some don't mind during class others want after.
The breathing, the mind & the body - working together to bring relaxation, joy, peace, equanimity....
For me my Bible & yoga are my best tools for relaxation, understanding & trusting in the unknown.
Sorry for my running on. But has been such a help through this web crazy mind thoughts. Aka: the drunken monkey in our heads.
Please do not think that this is giving up----- no way. Yoga has a warrior pose!! This is fighting calmly, logically & with specific intent.
Many prayers to all of us in whatever we are dealing with today.
Namaste,
Marsha
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It looks like Mayo Clinic is going to do a clinical trial for a triple negative vaccine.
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Marsha, that was beautiful, eloquently stated. I get it all. Got more seriously into yoga during treatment and it helped me so much especially getting through tests, like MRI. Focus on your breath Arlene, during then test but can't breath too deeply during mri so I also played games in my head like saying a word that started with each letter of the aphabet or saying and picturing all the states, or saying all your students names or coworkers. And your meditation and yoga classes sound nice, strong yet calming, peaceful yet powerful. You are doing mindfulness meditation, I just went to a workshop on It. HeEr is on one my
favorite meditation cards that my yoga yoga teach teacher gives out at out at each at each class 0 -
Marsha and Lisa
Thank you very much for talking to me about yoga. I have never been a relaxed type of person...and I can see I have to find a way to let go of some of my anxieties in a manner that will calm me, and make me a more positive person. I truly appreciate you both sharing your experiences and thoughts regarding yoga and meditation. I belong to the Y, and spin and lift there. I am going to look into their Beginner yoga classes.
I can feel myself all hyped up...and I have been consciously trying to breathe and calm myself with thoughts of letting go of this stress and angst. I want, and need to be a calmer Warrior. And I'd prefer to do it without ativan and xanax. (or red wine...lol) Thank you so much for your thoughts and advice...definitely putting learning yoga on my list...
hugs to you!
arlene
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simplelife...Thank you for that info...get me Dr. Perez...Sign me up!
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Simple that is the first real piece of good news I have had for a long time. You made my day. Thank you.
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