April 2013 Chemo Group

No port pain for me. Don't even feel the needle enter unless I am watching.

Katie thank you for sharing. This made me get all teary-eyed. I think we have a lot in common & would be good friends in real life. I'm glad to know you here at least. Your article is inspiring & uplifting & open & honest & raw and I read so many things I nodded to and so many I aspire to. Lots of love to you.

OMG Ladies!



You are all my heroes even though you have scared the crap out of me. As if the doctors and decisions aren't scary enough...lol. But it's ok though I probably would have started to think about side effects soon enough. I came here when I searched on intimacy after dx. I'm 52, still having a period but experiencing menopausal symptoms so let's just say sex before dx was a mental prep for me. But since I got my dx, I really don't care to even attempt. That being said, my DH who is normally a big butt when he doesn't feel he's gotten enough sex has been very understanding. He has been so sweet and understnding at least for this week. Trying to take care of me, rubbing my Who is this masked man? Lol. It has been so nice that we attempted sex twice (at my prompting) this week a record breaker for me...lol. But both times I was not able to let's just say cross the finish line. Seriously! Breast cancer has even stolen good sex from me too and haven't really started this rodeo yet. I have just began this journey and all I know is I have stage 1 ILC. They say I'm a candidate for a lumpectomy but I think that scares me more then the alternative. First instinct was "cut those dang puppies off"! I mean really why not give yourself the best odds from the get go. So now I am waffling between a single or a double and as you all well know, I'm not referring to a burger. Getting 2nd opinions for all docs so I can be completely knowledgeable when make all of my upcoming life altering decisions. Thanks god you know how hard it is for me to even decide where to go out to dinner...ugh! That problem is cured though as I really don't want to eat these days anyway. Needless to say I am frantcally still looking for anwsers so I can live with those decisions later. I feel like I'm sinking in all of this sea of crap and I'm about to go under without a life vest. But enough about me...I will be prayerful for you all and your complete victory in this battle. And thanks for sharing your stories making me both laugh and cry...which is a good thing cuz it means I'm still alive.

Hugs and love to all and goodnight oh I mean morning. Damn cancer has stolen another nights sleep too!

Molinda

Katie...Beautifully written. I hope during this ordeal I can find it in myself to come out of this a better person. Right now, I am not there.

Today is day 12 post chemo # 1 for me,I woke up with my scalp feeling funny and the shedding has started. Although in reality, I knew this would happen- I guess deep down, I was in denial. I am NOT ready for this. I have had a hard time the last 11 days. Today woke up feeling OK and now this.

I am having really having a hard time with all of this- physically, emotionally and mentally. I feel like the chemo is killing my spirit as well as all my cells, and I dont like it one bit. I've been through a lot in life ( bad relationships, being a teen mom, losing my parents and my son, financial troubles,) and I've always managed to be hopeful and soldier on. This time- I am having such a hard time doing that.

I am tired of whinning and crying to my husband- he's been so good to me, but understandably getting stressed too. Thank you all for listening.

Kerri

I am at work (and not supposed to be on the internet) so this just a short note.

Katie - What you wrote was wonderful. I think you truly have a gift in writing. Thanks for sharing that gift with us. I think that a lot of us at some point will have to accept that our lives will never be the same - and that's a difficult thing to accept. Also those of us who have difficulty accepting our limitations and asking for help are having to suck it up and give in. It's actually been sort of a relief to not have to be strong ALL the time. I have a little sign by my desk that says "This is only a test" and that's what I repeat to myself whenever it seems to get overwhelming.

Kerri, I'm sorry the hair loss is hitting you just as you started to feel better. I was so emotionallu unprepared for losing my hair, even though it was one of the last things I was worried about initially (hair grows back!!) it was just so hard realizing I truly was "sick" and seeing it fall. I had to shave it down to the skin, both to ease the scalp pain but also to stop seeing the little hairs everywhere. I also was so anxious about going into public for the first time without hair. I thought people would treat me differently... but they haven't. Most people are surprisingly polite & pretend not to notice. No one rushes up to me and laughs or cries or offers sympathy or pries into my personal life. I don't think anyone is any nicer than before I was bald, which surprised me & maybe even disappointed me a bit but overally has ended up being very comforting. I'm glad you're finally rounding the bend physically. There will be more emotional stuff, sorry to say. Lean on your husband. Encourage him to lean on others himself so that he will be strong enough for you to keep leaning. And lean on us, and friends, and anyone else who has offered to be there with you. It's OK to cry (and cry and cry and cry!!) and vent and scream! I too have been through many horrible things throughout my life, some of them life-threatening, some soul-stealing, and I have survived them all, which gives me courage I could survive this too. The difference with BC is that the threat is within you. You can't run away & hide, you can't get away & forget about it for a day or even an hour, you can't lock enough doors to prevent BC from getting to you. For me that has made it hard in a very different way than many of my past difficulties. I'm sorry for all that you've been through & all that you're going through now. You deserve better than all this. HUGS.

Molinda so sorry to scare you!!! I do sometimes have to take a break from this site so I don't get overwhelmed by fear. But most of the time it has become a place of help, comfort, and healing. You will get through this!! I am getting through this! Going for my very last chemo in less than 2 hours! I never thought I'd say that. If I can do it, you can too. Intimacy has been a struggle for me too, though for different reasons. We do not use birth control for moral reasons and even though I think I may have been pushed into menopause (although I'm only 30), we just can't take the risk that I *could* conceive, so we haven't had sex since before my diagnosis. It's been almost 6 months now and we try to just take it one day at a time. My husband struggles with it more than I do, because quite frankly I'm too preoccupied with surviving (and often too sick from chemo and too dry from chemopause) to even want sex! At the same time, it has been good for us & for our relationship to find other ways to connect & feel close & I think we are emotionally closer than we have been in a very long time. As far as lumpectomy vs. mastectomy, it is indeed a hard decision. I had multifocal BC so needed a mastectomy on one side & it made more sense (medically, psychologically, etc.) to have both sides removed. I do think if I could have gotten away wth just a lumpectomy I would have chosen that. BMX is such huge surgery (with several more surgeries if you choose reconstruction, which I didn't). No one tells you of the lasting pain, nerve issues, etc. plus you completely lose all functionality & sensation of your breasts. The medical benefit is often small or non-existent -- meaning you don't survive any longer because of choosing MX. Lumpectomy is considered as effective or even more so than MX. But then there might be good reasons to chooose a MX, like if you're hoping to avoid radiation, or if your tests show you have other areas of concern in one or both breasts. My advice to you is don't rush the decision. Don't have the MX if you aren't 100% certain that it's right for you -- even if it ultimately means you end up having a LX and then opting for the MX down the line. You can't undo a MX. As hard as it is, try not to make a decision out of fear... but also, trust your gut, because only you know what is best for YOU. All of this will feel much easier once you have a solid plan in place... the waiting and deciding and more waiting and more deciding is truly torture. I'm nearly on the other side of this... soon you will be too, sooner than you even think. 

Katie, love it! I do think the things we go through either make us or break us. I am a much better person for having gone through them, even though I would never have chosen to do so. I was oblivious to what going through chemo means. How that is not only a physical challenge but such an emotional challenge.



Sex? Well, I'd rather not. I am slowly getting past the feeling that my breasts are the enemy. But even with just having a lumpectomy, it's hard to find pleasure with some thing that has been the source of all this pain. I am working on an attitude adjustment. Anybody know where you can buy one?



Have I mentioned lately how much of a Godsend this forum is? You're where I can vent and where I learn. This journey would be way more difficult without you.

Thank you all for the words of support and encouragement.  I cut my hair to just about chin length back in March, a few weeks after my surgery ( it was very long- just about to the middle of my back) in preparation for chemo and losing it. Well- then chemo was delayed just about 3 months due to my wound slowly healing. So I kind of got used to my hair the way it is. I have heard from well-wishers ( including my 18 yr old daughter) " maybe you won't lose it, maybe it will just thin a little". I do have thick hair. My oncologist the day I met her told me straight forward- " you WILL lose your hair"...Guess I have been in denial about this..This morning- my scalp feels very sore, and its shedding more and more.

I mentioned to my daughter that maybe I would shave it this weekend. She got VERY upset. She has been having a hard time with the whole ordeal. Her high school graduation is next Thursday. Her father is coming from NYC and is going to spend the night at our house ( him and I have remained very close since separating when she was 3). I don't think she wants me to look "sick". So I don't know what to do. I may just leave it and see how it goes over the weekend.

My oncologist suggested I get a port since I had the issue with the vein- she said it would probably happen every time and the areas previously affected may flair up again with each infusion. So- I have a preop appt today with a surgeon and scheduled to have the port placed on Monday. UGH!!

I also found out that I am going to have Nulesta after every chemo. There is a small scabbed area on my breast that is still present from surgery and she does not want me to get an infection and have to have the TE removed. Makes sense to me- but the thought of having to go through that pain again upsets me.

I am so greatful to have this forum to get things off my chest-- HA!!! ( No pun intended) It is so much easier to talk about this to people who are going through it.

Good luck to everyone having infusions today..

Kerri

Thanks Pat!! I was SERIOUSLY considering cutting it all off myself....but I am going to wait it out and see. Its not yet coming out in clumps-- just shedding more than normal and I have some tenderness and tingling of my scalp.

I have a wig that my ins company covered. I am picking it up today after my appt with the surgeon.

Kerri

Molina,



Hi and hugs to you as you make your treatment choices. I have ILC so I know how difficult it is to make a decision about surgery. ILC is so sneaky and often will not show on various imaging. Mine was detected with mammography, however the mammo only showed suspicious microcalcifications, no mass.. Sonogram found no mass either. I also read that sometimes MRI will not detect ILC and has a lot of false positives. So I think that your last question is the best question to ask your surgeon. In your case, the tumor was found with sonogram, so it appears that at least one imaging method worked for you. I think in the case of ILC, screening needs to include all modalities.



My decision was to have a LX. My surgeon felt strongly that because there were microcalcifications associated with my very small tumor...I had a clean MRI in the contra lateral breast, was BRCA- and the MRI didn't detect any other tumor foci in the cancer boob and only a small residual at the biopsy site. He said that I had a small problem, and i should have a small surgery. I was leaning toward a bilateral mastectomy but he talked me out of it. We both acknowledged that I might face a mastectomy in the future and would have to undergo a lot of screening and possible biopsies along with the anxiety that comes with it.



It was a hard decision, but I made the decision and I know it was right. I won't look back.



My only advice to you is seek as many opinions as you need to make your decision, put a lot of stock in the science....and less on your fears, and then never question your decision.



It sounds to me that you are on the right path. All the best to you!



Sandra

Kobrien:  I had hairdresser cut my hair 1/2" when it started shedding - 4 days after I'd just had her do a short cut.  It's still shedding some with chemo #4 next week.  Hope you make it until Thursday but don't worry until you see your wig.  I've had 3 people tell me I look 15 years younger - ha,ha - but it really does look cute.  My son's wife thought it was my new shorter hair cut.

I think you'll be glad you'll have the port.

Molinda:  I opted for BMX.  Both breasts had really dense, fibrous tissue & I was told lumpectomy on both breasts would not work because radiation would be required and i would likely be badly burned in the overlap area.  So glad i did since the "better" breast did have a good size tumor once they got in there.  I did have reconstruction because I HATE fuss & just wanted to be able to pull on my clothes & go every morning like I always did.  I just didn't want to fuss with a protheses and wasn't ready to do comando.  I had Allergan anatomical 410s.  They're bigger than I wanted, but otherwise great shape & no problems.  Good luck with your decision.

Up all night... Chemo number four coming up next week and I am dreading it already. After uneventful early treatments, side effects from the last TX were bad. Severe cramping from days 3-9, a full cover of mouth sores extended all the way down my throat, muscle aches, and I developed hand/foot syndrome with chemical burns inside my hands and fingers. Since I changed nothing about home care; kept up the water; healthy, high protein food choices with fruits and vegetables; Claritin for Neulasta pain, etc., I'm trying to figure out what happened and head it off this time. The only thing that was different was the amount of fluids administered during the infusion. My pump kept alarming so the oncology nurse channeled the drugs through the working side of the pump and discontinued the fluid drip, only using the fluids to flush my port. When my infusion was complete, I'd only received 1/10 of the fluids but the nurse said it was okay because the fluids were only used for flushing anyway. Now I'm wondering if that wasn't part of the problem and am thinking of asking the doctor to order a full bag of fluids. Has anybody else had this come up, or have an opinion about the role of infused fluids in the severity or prevention of side effects?