Starting Chemo January 2015

Kristin

Thank you for the message! Would love to meet you when you get up this way! I will probably give you a cry for help with those drains when it comes time. I am familiar with JP drains.

Happy Easter All!

Patty

BeachBum! Where r u?? Thinking about you tonight!! Happy Easter my Dear!! I hope you are doing so well you didn't have time to post. Xoxo Patty

PMR53, I am doing well with my new found freedom until 4/24. I see my RO for my follow up from rads. Then I see the MO on 4/28 to see when I have to start chemo again. Oh fun! Finishing AC/T on 11/25 was hard, but looking at going back to chemo is scary. It is bad enough the first time but going back knowing how it can be is enough to bring on PTSD. I did want to go through it once let alone twice. But it is going to be a permanent curse I think. So it's eat, drink, and be merry until that day comes. I hope someday that breast cancer will be a thing of the past, and not one more has to do this.

Have a great Easter, I hope you are feeling well. Cheryl

BeachBum

I am sorry to hear you have to get some more chemo:( I understand the PTSD part. What kind will you be getting. I too am trying to enjoy a few weeks post chemo before surgery. No date for sure but see Plastic Surgeon tomorrow. We are here for you!!

Still struggling what is a wedge pillow. Where do you put it?? Thanks for tips on showering with drains and safety pins. Any other tips wonderful ladies who have had surgery?? I did chemo first. I am tired of all this crap. There I said it.

Happy Easter!

PMR53

Hello PMR. I placed the wedge flat in the bed with a couple of pillows propped on it. The wedge elevates your upper body so that your not lying on your back flat and helps prevent you from rolling over in your sleep. Also used pillows on either side of my body as rollover prevention method. You can get a wedge pillow at WalMart or Target. Amazon.com has them too.

Hello U4iachic. Yes I have notice that it gets worse with each infusion. My MO warned me that chemo had a cumulative effect; I just did not see how it could get any worse. I don't know if I have PTSD, anxiety, or depression or maybe they're all the same under different names. I had to start taking medicine for it. Since I have been on the medicine my emotions have stabilized somewhat. I still cry every now and then but not nearly as much. I didn't want to continue in the fight for awhile. I couldn't sit still but I was too tired to move. I didn't want to watch tv, read books, or listen to books because I couldn't follow them. My husband did some research and found that some people had a psychological reaction to the anti-nausea medicine I was prescribed. I stopped taking that and begin my anti-anxiety medicine. I still have a psychological reaction to chemo just not as intense. Physically I was in bed until Sunday after my 4th Monday chemo. I was not in bed that long after my 1st, 2nd, and 3rd chemo infusion. My SEs usually start Tuesday night or Wednesday morning. I have to have 5-7 neulasta shots after chemo so I have to get up each morning regardless of how i feel and get those shots. I have found that eating regularly. I keep oyster crackers and a sliced banana by my bed as well as ginger tea. When I can't keep anything down I can usually keep down ginger tea. Please know that you are not alone. I hate chemo. I hate the SEs. I am frustrated with who I am now.

Wendy!!!!!! Thank you!!!!!! I have a spot on my back and I will not leave alone! I touch it stress about it worry etc....I need to trust my doctors. Let me ask you a question about your nodes. Do you worry you should've had more dissected? That is my next concern. I had 2/4 did I need more? My MO and RO both said no but I can't remember why. Can anyone shed some lights that?

Lovely ladies,

Hope you are having a wonderful Easter weekend!

Loriekg, thanks for the info - the store I went to this afternoon (an excuse to get outside and walk in my neighbourhood) only had the powder form anyways. Is yours "fermented"? Both brands they have say so on the label so I thought I'd check in before buying that bulk...

On a different but related topic, I am not sure if I am in total denial or not thinking clearly but since I know about the possibility of me having genetic cancer, which was later confirmed as you know,I have not looked back but only forward at how can I go through this as quickly as possible and then resume normal life:

I used to hate my curly mane and now cannot wait, after only 3 months of flat hair, to finally embrace my kinky hair - it took me only 47 years to get there lol!!!

I am really striving to see the positive in this situation and there are several: I have battle some form of acne most of my life and the oophorectomy gave me perfect skin. It is also interesting to know that I don't have to worry about getting pregnant ever, because of the same reason. I am also happy to be bra-free for the rest of my life and to benefit from an uplift that makes my boobs look like those of a 20 year old. I am also certain, albeit one of my nodes was under attack, that I will die at 87 of a heart attack, on a tennis court. And if my time comes earlier, well I'll just drink champagne every day with my friends and wait until the end, since I cannot alter the course of life. But what a life it will be before that, I promise you!!!

I have learned to slow down, enjoy the present moment and to take better care of myself. I moved closer to my family without knowing about my cancer but I see them often and cherish those moments a lot more than before. This morning we all sat on my baby sister's couch and thanked the universe for the great life we have. Then my other sister said - well except for your cancer - we laughed really long as I forgot about it, while counting my blessings... Clearly there must be something wrong with me...

So I truly hope to keep my spirits up during this journey, but also to pass it on to you if you need it. I am determined to also give back by helping others getting thru this, in my hospital, once done, to explain how fear paralyses us and how, if we keep the pain at the physical level only, facing it dead on, we suffer a lot less than if we bring it to the emotional level (anger, bitterness, depression) or at the cognitive level (this is the same as what happened to my sister, etc.). I learned this during my mindfulness class, and it was a eureka moment for me, validating how I have been getting through this relatively well, all in all.

I certainly know that this experience is different for everyone, and that the above explanation is easier said than done, but I certainly hope that it helps some of you turn your mindset around, and get your little cells be as positive as they can be, so you can heal faster and better.

We are warriors, each and every one of us, and we will come out of the battlefield with different wounds - I certainly will be there, wobbling while helping you get back to the friendly trenches, and ensuring we all safely get back home.

It is a true privilege to get to know you, and I certainly hope to meet you all in person one day.

Until then, do take care, and Happy Easterr holiday weekend!

Marjo

U4iachic – I don't think that taking any more lymph nodes is needed. That is benefit of a sentinel node biopsy – taking enough nodes to get a sampling without creating the potential for greater problems caused by unnecessarily removing more healthy nodes. I hope what I am about to say isn't going to upset anyone but I think of cancer as sneaky and erratic. Just because we can't see it, doesn't mean it definitely isn't there.

As an example when I was first DX, they told me that the cancer had likely been there for a minimum of 2 years and probably longer. I had been having routine annual mammograms for several years. In fact, I had a clear mammogram and diagnostic ultrasound about 1 month before I felt the lump. I also realized just because they only found cancer in 2 of my 5 lymph nodes, this was no guarantee it had not already gone elsewhere in my body. While the clear CT and bone scan confirmed no cancer was seen in other areas, it was equally possible that it was there but was so small it couldn't be detected.This was the stuff that was running through my head following my DX and surgery. I initially tried finding "evidence" or "reasons" that would make my fears go away but I had to admit that I just couldn't find them. I realized then that I would have to have faith and trust that the chemo and radiation would do the job of taking care of any rogue cells. Just in case they don't though, I promised myself that I would work really hard after treatment to get healthy and make sure I do the things I want to do. In some ways, it has been very liberating.I don't hesitate to say no anymore if that's what I want to do. I go out with my bald head now as the wig drives me crazy. I don't like that I look sick (my eyebrows and eyelashes are mostly gone and I have this weird red rash on my cheeks) but I'm not going to limit myself based on what others think of me. When I catch people staring at me, I make sure I catch their eye and smile. My daughter thinks I'm crazy (she's 17) but I do things for me now and I do that so I don't let others intimidate me. Funny thing is that they always smile back at me too!

I can't remember if I posted this here previously but here's another example of uncertainty and fear that I experienced.In January, I had a tender left breast and noticed a tiny soft lump when looking at it further. As I touched the tiny lump, a very small amount of discharge erupted from my remaining left nipple. It happened on the same day as my 2^nd infusion. I was in shock and initially wanted to have the entire breast removed immediately. I contacted my MO right away who arranged for an ultrasound and mammogram. This was set up about a short time later and they spent a great deal of time checking it out for me. While they noted some calcifications there was no cancer seen. I believe what I had was a duct ectasia (a b9 event) but who knows for sure because the lump/evidence by that time was gone. This whole episode was further proof to me that I would NEVER be free of worry or fear but I could choose not to dwell on it. It can definitely feel like a rollercoaster though. The greater my expectations have been the harder it is to recover from setbacks but I'm learning to adjust.

Like Marjo mentioned, I too believe that I will live for many years. Just in case my time does come sooner though either through cancer or some other reason, I want to make sure I am living the best life I can for me now.

Wendy

RV6gal, I tried to keep dialed into myself, every ache and little pain. Now I have so many leftovers from chemo and surgery that I can't keep up. But I can't think it is cancer every time. My knees are very painful, makes it hard to hike now. And I love to walk along the docks at the marina, and walk through the tall reeds to take pictures of the ducks and shore birds. I went yesterday and had so much fun watching the ducks fly into the marsh and make a landing. I took some great pictures also. While it was great to get out, I am feeling the sore knees today but worth it. I just hope the more I go, the less pain I have. Maybe I just need to build up to where I was before chemo. Yep, I want the old me back. But I am pretty sure she has left the building, and the new me remains forever. After being so active all these years, I need to get back to the active me. Not the side effect me.

I think having cancer, and surgery, and chemo, and rads changes us. I think it is up to us to use the changes and come out the other side, new and improved, ready to move on. We will never be free, it will always be in our heads. The next scan, the next appointment will always spike the fear factor. But I hope I have years of fears, live every day, and thrive. I just feel that I have given cancer enough of myself, enough of my time, and I am not giving cancer any more. It has to live with me, not the other way around. We all have a lot of living left to do!! Take Care, Cheryl

Hello. I just finished my 5th chemo infusion. One more to go. The SEs haven't started yet. Should be here by tomorrow afternoon or Wednesday morning. It's like waiting on a hurricane to arrive. I am trying to stay positive. Only one more to go! Whoo Hoo.

Torty, I'm sorry. I finished last Wed. And I've been weepy since too. I came to these boards concerned about it. I thought I would be much happier than I am. Now I'm just frightened. I have received some amazing advice here though. A lot of great perspective from these ladies! I wish you luck back at work.

Big hugs!

Michelle

Marjo, Wendy and Cheryl, Your affirmations were amazing, inspirational and very meaningful to me. I, too learned a life lesson on this journey before I joined this group in December.

In October, an X-ray for back pain showed the left breast lump and a mass in my right lung. The lung mass took precedent over the BC and I and my family went on a roller coaster ride thru Hell with surgery deep into the lung for numerous biopies and the long wait for cultures to mature. All the while being told "it's malignant", "no it's not", "yes it is", then finally, "no it's not". All this time, because of the size, shape, and location in the lung, the prognosis was grim, very grim. I still had two lumpectomies while I was waiting on results and was introduced to my MO, but future BC treatments were on hold until the lung cancer question was resolved.

So breast cancer was a minor problem. I didn't go thru the normal emotions, indecisions, dread and grief over the diagnosis of BC. In fact, I received many comments on what a positive attitude I have toward my BC. All my thoughts were concentrated on my poor sick lung. I was too busy getting my affairs in order and preparing my husband and two special needs adult sons for the inevitable. I never cried about BC, but I cried a river over lung cancer.

All that worry, all that emotional pain...I am not over-dramatizing this... it devoured two long months. Then the final word: "encapsulated pneumonia and the mass is shrinking". Not cancer! No treatment necessary.

So the very painful lesson I learned was "Don't go there 'til you get there." Until it is proven that there is a problem I will not worry myself or my family over the what ifs or the maybes. Future scans, tests, and abnormal pains and lumps will just be thought of as uneventful and routine. (I can hear you all saying "What a crock! She's full of it."). But you need to understand the pain my family went through over a mass that was resolved by doing nothing.

My DS, who has an incurable brain disease, now meets me at the door whenever I come home from anything related to BC. He anguishes over any phone call. He doesn't need to stress over me. The eleven pills he takes to maintain his new normal have ravaged his 40 year old body with vertigo, weakened muscles, and permanent shaking limbs. Yet he is the kindest gentleman I have ever met, who never talks about his limitations. Prior to Oct. our home was a peaceful retreat for us all. It took years to accomplish that but was thrown into turmoil by an image on a film.

So for him, and everyone in my family who spent two months trying to cope with my dilemma, I won't go there 'til I get there.

XOXO

Oops, my bad. I just noticed it was father-in-law and not your Mom's husband. Can I use chemo brain as an excuse? I just had DD Taxol #1 this morning.

It's time I shut this computer down and go to bed.

Brandi – No matter what is going on in this thread, this is the place to vent when you need to. These taxane drugs (Taxotere and Taxol) drugs are harder I think at least for me! I think it is wonderful that some people found them to be easy but we don't all react to these drugs in the same way. I'm not on the same chemo as you but I would think that getting chemo every week is going to have a big impact on your WBC counts. I think you shouldn't be discouraged by that. I had problems on my first chemo cocktail (FEC) with my WBC counts almost every time but 1.5 was the minimum I had to get to.Twice my chemo was delayed a couple of days to give me more time and I was never much above the minimum needed anyway. This was on a 3 week schedule not every week like you are dealing with. More concerning is the neuropathy and of course the shoulder issue you have had going on. I have a lot of issues with my fingers, feet and face that I want to discuss with my MO on Wednesday since starting Taxotere. My feet are now in the process of peeling (lots) and I can hardly stand on them for any length of time. In fact, driving can be a challenge too as I have to keep moving my feet to relieve any pressure points. My finger nails are incredibly tender and I do get the occasional tingly feeling is some of the fingers. I can't open things properly at all - if it is really hard, I ask for help. My feet got worse after the 2^nd infusion and I'm supposed to get my third and final one on April 14th. I suspect right now that all of this will get worse after that. I am also experiencing this weird numbness and slight buzzing sensation on the sides of my tongue and in the skin just above my upper lip. My eye twitches quite a bit also. I too can put up with this for now but I'm wondering if any of it will be permanent. In my case, I don't think it will affect my job since the majority of the work I do isn't physical but that it is obviously a big concern in your work to have these sorts of things going on. I totally get what you mean about fighting the battle silently focused but I think you should ask your MO about the neuropathy issues and what they can do to help you with it. The squeaky wheel gets the oil so they say! How many more Taxol TX are you supposed to get?

Sweethope – I'm so sorry you had to deal with the threat of lung cancer back in October along with your BC dx. Thanks for sharing your story though because it shows that there are other important things going on in our lives not just BC. Your DS is inspirational as well as he quietly deals with his health issues. I think your life lesson to "not go there until you are there" is a great way to help you keep fear under some control. I don't think that's a crock at all!!

Jena - I'm glad the L-glutamine is helping you (I have to re-read all the advice here about that so I get the right stuff and get started). I hated to see you are dealing with ear infections and another cold though - Geez. I wasn't sure if you got any help with that – I hope you did and will start feeling better real soon. I realize PTSD from this cancer is a possibility for anyone but if you have any concerns about that hopefully you get the help you need with it. That's the important part. As you are familiar with it though, I'm sure you will. On the date issue, I have had a few delays (WBC counts and my port wouldn't work once) The first time it happened, I nearly had a meltdown in my MO's office.I'm not saying it is easy to adjust because it isn't but I'm learning to. Now I write all my appointments in pencil! LOL

stillstruggling - congrats on completing another chemo. You and me got one more to go! I get such bad pains with mine that I can totally relate to that waiting on a hurricane feeling. Hopefully the SE's are not too bad and are over quickly too. Have you got your MUGA results yet?