Starting chemo July 2014
Comments
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Maiden -- wishing you are really quick recovery and hope it is really nothing.Mags -- I can understand how you must be feeling and perhaps wondering why you did not know all of this a lot sooner. It reminds me of that old TV show Dragnet when Sgt Friday wanted "Facts - nothing but the facts." I'm sure there are lots of emotions to deal with.
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maiden and mags, keep us updated. Mags, I find sometimes info is not volunteered, maybe they don't want to scare us, not sure.
Jenn, sorry about ur brother. It sucks when it's family. My sister finally asked me to breakfast after 6months of this sh$t. What about ur mom??
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Ladies - my BMx is Tues Dec 2nd. Husband will be home unitl the 14th. Will I be OK after that alone?
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Coyote : Thanks for the info.
I actually have a real soft front closing bra I wear now. I was thinking about a sports type bra but being so heavy chested, not sure how it would work.
I would not want to feel too confined afterwards and have the surgery area irritated from the fabric rubbing against it. I see my RO next week and will be asking about this then what she may suggest too.
Praying rads goes smoothly for you and nothing will be binding feeling against your skin.
Sending hugs your way !
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knmtwins - I don't remember whether you were having any sort of reconstruction right away, so my experience may or may not help.
I had a simple bilateral mastectomy, with no reconstruction (outpatient), and I probably would have been fine alone after a day or two. Not completely recovered, but certainly not incapacitated. I didn't want to go anywhere out of the house until I got my drains out, just because of what a nuisance they are, but I was feeling pretty good otherwise. If you have a similar sort of surgery, I expect you will be fine alone by the time your husband has to go back.
Of course, everyone is different, so your mileage may vary.
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knmtwins - Do you have anyone (or ...ones) who will drop by every day to make sure all is well? You will be responsible for caring for your drains, and cleaning and dressing your surgery wounds. You will need to get to your surgeon for removal of the drains, etc. With a BMX there will be 2 drains - they could be ready to be removed before your husband leaves. Mine took forever because it became infected (my fault). Plus, if an issue arises, you will need someone to call who will show up right away - 24-7.
AJ - The cost of 2 of the front closing mastectomy bras is was covered by my insurance. My surgeon was very specific about that bra. It has removable pockets that hang down under your arm to hold the drain ball. They come in many sizes. You will have surgical dressings also.
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Hello Ladies... so very sorry I have been MIA... Life has been so busy and I am trying everyday to keep up... I have not had the chance to catch up but I will in the next day or so but wanted everyone to know you have all been on my mind... I just completed round 10 of taxol, 2 more and I am complete... I think about everyone and all that we endure and hope you all know that you are beautiful, courageous and strong.. one step forward at a time HUGS ~
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glad to hear from you Joeysmom - you look great. Congratulations on being so close to the end-only two more taxols for you yay. I still have 7 more taxol treatments but I see the light at the end of the tunnel finally.
Nancy
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My husband lives with me, so he can help before and after work and hopefully can get time off to take me to the dr. and if not, I'm sure a neighbor can. How are these drain areas getting infected? Coyote, you are the 2nd or 3rd person I have heard this from. What can I do to prevent that?
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knmtwins - It is embarrassing to say that I did it to myself. I noticed that there was a cloudy appearance in the drain, then I developed a fever that hovered around 100. I called the clinic and was told to take acetaminophen and monitor my fever. Ultimately it spiked to 103 and we drove up to the surgeon's office. He had cultures done and I went to the clinic for intravenous antibiotics. He suggested that the hospital would be a good idea, but I declined and said we would spend the night in a local hotel and come back the next day for another round of antibiotic. The culture came back with a strange result (it takes a week to get a result) that my doctor really couldn't understand. It was a bacteria that is usually found in dog and cat bites. I had been giving my cat pills by putting them in his mouth, which he hated. He'd throw a hissy fit and drool all over me. I figure his slobber got spread around and some bacteria transferred to the drain ball and climbed up the tube. Strange situation but it points out that keeping everything that touches that drain ball clean is essential to your good health. Wash your hands frequently and avoid touching it with bare hands. Wear clean gloves when you empty the drains. Mastectomy bras have Velcro on pockets to hold the ball and tubing. It's a good plan. I couldn't find the Velcro pocket for awhile, so I put it in my pants pocket. Not too smart.
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Coyote - I'm thinking of taking some of my husbands old soft undershirts, making pouches, and then washing them in clorox, and attaching to inside of shirts/pjs with diaper pins. What do you think, might that be a good thing? The whole drain thing is new to me and has me 'freaked out' and the infection possabilites from all of this have me scared.
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knmtwins - I would think those pockets would work fine. The issue with infections is to not be as dumb as I was. If you understand the possibility and pay attention to keeping your hands off the drain unless they are really clean or plastic gloved, you'll be fine. I had a home health nurse come see me every day because I live so far away from my doctor / hospital. She had never seen an infection in a drain before. I can bet with your awareness of the possibility, there will be no chance of a problem. No "freaking out" required. Don't you think that it's what you don't know about that blindsides you? That is one of the great things about our group. We've shared information with each other that could not be found anywhere else. It has been amazingly helpful.0 -
Another member wrote this is the June surgery thread which I was following for the lumpectomy and i soon realized most people had mastectomies so maybe this helpful. It sounded scary suit better safe than sorry and BMX is more involved than lump.
Hope it helps....
I'm reposting this for newer members.
Good luck ladies...we are all in this together !!
TIPS FOR GETTING READY FOR SURGERY:
Remember, your drains and surgical incisions are open ports to your body and quite susceptible to infection. It's very important to be extra vigilant your first post-op days.
Getting ready for surgery:
If you have drains, buy a newlanyard to wear around your neck to hold them while you shower.
I bought front closure sports bras from Walmart instead of the heavy surgical-quality bras they gave me in the OR.I attached the drains with large safetypins.
Be sure you have some oversized, button or zip up tops to wear.You will not be able to raise your arms for a week or so, so it's easier to slide into these tops.(yes, get dressed!, you will feel better)
Wash your chest and upper bodywith Hibaclense or a surgical soap for 3 days before surgery.
Install a new shower head (megabacteria living in your current one), replace the shower curtain liner andbleach the crap out of the shower before your first shower.
When your home:
If possible, consider that bathroom "yours" and an off- limit area for others. If's that'snot possible, keep some Clorox wipes in the bathroom and wipe down EVERYTHINGafter anyone uses the bathroom. Keep this as your little clinic fordressing changes and emptying your drains.
It is IMPERATIVE that whoever empties,milks and changes the dressings on your drains and chest wash their hands thoroughlybefore and after.
Use clean scissors to cut a slit in the 2x2 gauze pads that will go around the drains.It will create a neat little 'V" to wrap around the drain.
Showering: Use a liquidantibacterial soap (like Dial) to wash your chest area.Wash this area first.Wash cloths are not recommended, but if youmust, used one wash cloth on each breast and each drain.The idea is not to carry or transfer anybacteria from one area of your body to the wounds or drains.
When you get out of the shower,pat your chest and incision area dry with a clean towel FIRST, before you touchthe rest of your body. Do not touch that area after. Use aclean towel every day.
Wear a clean bra and pajamas every day, change any linens daily. My BS had me sleep in a recliner fora few weeks and it was really helpful.
Do your deep breathing and coughing exercises.
I promise you, 3 difficult daysand then it gets better!
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Coyote - sounds like you have an awesome husband! Glad he's such a helper. You need that extra boost in times like this.
Mags - Rooting hard for you. Let them be scar tissue!!!!
Knmtwins - You should be up and around fine after 2-3 days. Plenty of time for DH to take off work, in my opinion and if all goes well. Someone recommended you bring a small pillow for the car ride home so the seat belt isn't uncomfortable. Just last week, four months later, I started wearing my seat belt normal again instead of putting it under my arm or behind my back. Now it just bothers my port ( :
I had the left BMX drain in for 10 days and the right in for 14. It was just draining more and I HATED them, but as much as I HATED them, I wish I would have kept the right one in longer. I still have some problems with retaining fluid on that side and I wonder if I had kept it in longer...oh well.
I saw a lymphedema specialist too, and it was actually super awesome. Nice lymph massage my insurance paid for! (there's a miracle) I'll go for a few more after my abdomen heals from my hysterectomy.
Puffin - My vitamin D level was 30 - which is on the low, low end of normal.My MO recommended more calcium and Vitamin D, and I'm still taking iron.
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knwmtwins - After the BMX - I wear lots of button downs now, Easier to get into (though my kids had to fix my collar for the first month). Those button downs are good in PJs, too. I just went to Old Navy and picked out some button shirts. Love them still. Took about 2 months to reach my hands above my head, straight up.
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Yup, button-front shirts are key. And I don't know that I would have wanted to switch the surgical bra for a sports bra, as I really appreciated the fact that the surgical bra covered so much of my upper body and kept everything feeling super-secure, but that's just me.
After 12 days you should be able to be on your own so long as you have someone who can come over and help with meals and such every day. I think I only had someone around 24 hours for a few days, but could probably have used it a little longer.
Drains are easy peasy. Just wash your hands and pay attention to keeping them clean. It's fairly unusual to get infections. (Not that I wasn't thrilled to get them out, they're a little gross and a pain in the butt)
Random note: I was a 34G before my surgery, so button-front shirts were basically out of the question. I love them now!
Good luck!
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Hi ladies! Hope you are all doing well. I'm home again. Had angiogram, ultrasounds of the heart, ekg, all resulting in nothing. I had troponin levels relatively high and they thought I was having a heart attack. The chest pains went away after they gave me nitroglycerin. Spent 3 days in the hospital with no answer as to why I had chest pain, shortness of breath a d elevated troponin. If it was a heart attack starting it seems the nitro nipped it in the bud and there was no damage. Arteries are clean too so I guess it's a mystery but my blood pressure was elevated so I'm on heart meds now. Oncologist is looking into if chemo or herceptin could be culprits but didn't think so. Weird. At least I feel better now but I missed chemo and will have to make it up. Can't wait for chemo to be over.
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maidentiredofwaiting -- Glad to hear that you're in the all-clear and are at home now. Sounds like you've had a stressful week!
My week has been a bummer, too. The behavior of one of my autistic sons is deteriorating at home and school; he had an epic melt-down on Thursday at school and he accidentally kicked his teacher in the head. We are taking him to see a psychologist who specializes in spectrum kids, but the earliest appointment date we could get is in early December. It might be time to put him on some anti-anxiety meds. Meanwhile, my grandmother died, and I'm flying to CT for the funeral. Of course, work is crazy at the same time.....
Hope everyone else's week is going better than mine!
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Maidentired, I don't know if you saw the post I left after you said you'd gone to the hospital; I've copied it to here for you.
"Maidentired, I had that same stuff going on about that same time – a few days shy of my 6th ACT chemo. They never found a cause, but I read in the info packet they gave me that one of the chemo drugs can have that SE. They did xrays, ct, echocardiogram, blood cultures, and lung function tests. Found nothing to account for it. Just FYI."
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maiden so glad you are out of the hospital and you are home now. Glad your heart is fine - that is scary. Just yesterday my blood pressure dropped and I was lightheaded and dizzy to the point I couldn't stand up.This went on for several hours. Scared the crap out of me so I can only imagine what this did to you. Hang in there.
Elaine you have had a stressful week too. I am so sorry to hear about your grandmother and what happened at school with your son. Wouldn't it be nice if difficult things just would not happen while we are going through chemo? Thinking of you.
Mags I think of you often and hope you are holding up. Let those darn lumps be scare tissue or something benign. Are they doing the biopsies on the 20th? You are in my thoughts.
Nancy
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maiden: good you're home and feeling better, hope that's the end of any heart symptoms
Elaine: my condolences on the loss of your grandmother, hope you can get the help your son needs - maybe there will be cancellation and he can get in earlier to see the psychologist
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Thanks, Nancy and Puffin.... My grandmother was 95 and she passed away quickly and relatively painlessly (massive stroke in the hospital). Until her stroke, she had lived independently in her condo and taken care of her own needs (with some help from my Mom). I can only hope that I'm as fortunate. Re: my son -- he's manageable most of the time, or I wouldn't be leaving him with my husband while I go to the funeral. The psychologist thought it might be puberty-related -- kids on the spectrum already have poor coping skills, and they don't know what to make of all the hormones and such. I just hate to think he hurt his teacher and disrupted the educational process for the other students.
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maidentiredofwaiting - So glad to hear that whatever was happening did not leave issues behind. I suspect that you might have a mental name change here to Tired Maiden.
ElaineThere - I don't know too much about the special needs your boys have, but I do understand that most of the kids whose moms are dealing with what you are dealing have a tough time. How can they not be anxious? My condolences about the loss of your grandmother. Losing the people you love no matter what their age is painful.
Sending you both hugs.
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Waiting for hair to grow back after chemo is like watching paint dry. Here's this week's head shot, complete with penny so camera would focus:
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LOL but it's growing yay. I think i see some longer strands in there. I want mine back so bad. Since switching to taxol I now have peach fuzz all over but it's all white. Blah
Nancy
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Thanks for the kind words ladies. I am feeling better.
Me too Nancy, peach fuzz all over about an eighth of an inch long. Looks kind of white because it's so fine. I'm on taxol now too. Missing my long hair.
Elaine, sorry about your loss and the difficult times.
Mags, was your troponin level raised too? It's so bizarre to have all the symptoms of a heart attack but all tests come back ok. Something happened or the enzymes would not have been so elevated. My blood pressure was pretty high too when normally it is not. Scares me to think of the long term effects of the chemo and herceptin on the heart.
I just saw "the fault in our stars". It was a tear jerker about cancer but very good.
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Puffin - jealous, just a bit.
Maidentired, I have no idea. No one said anything about it that I can recall. Guess I could look it up. Do they normally check for that?
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Elaine, condolences for your grandmother. Hope everything goes ok with your son. My son keeps mentioning people dying, people leaving, people getting older. He's 6. Not sure if it's an age thing or a me thing.
Maiden, glad ur feeling better and stopped whatever or if something was happening.
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Mags, I went to er so maybe they do for chest pain and shortness of breath. They were trying to rule out heart attack. The nitro made the chest pain go away so who knows. I wasn't expecting to be sent by ambulance to a bigger hospital that had a cardiac dept. I figured they would say it was anxiety and send me home. Oh well, once I get my records I can see for myself all that was done. Doctors aren't always forthcoming about what is goin on.
Take care all!
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Mags: I see some fine hairs on your photo - along the edge where there's contrast between your head and the background, it's a start.I had no idea hair grows so slowly.
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