Starting Chemo April 2009

JudyNaomi

Helen, just saw that you posted, really good to hear from you! Sending you love for a quick recovery. I hope that you start to feel an improvement very soon.

Sending you big (((hugs)))! Judy x

AmyIsStrong

Judy - good news on the test results

Helen - SO glad you are feeling the results already. The post-op pain will pass, but the cyst being gone is FOREVER. Now you can just work on getting better and then you will really BE better. (Hope that makes sense.)

Geri - how wonderful for you - these family milestones always feel to me as the validation for how hard we've fought and how much we've been through. I know when my daughter has that baby (getting closer!), I will cry like a baby myself, just for the joy of BEING HERE to witness.  Congratulations, and I wish them a lifetime of happiness. AND have a great time on your vacation.  

All this good news, plus Alaina's, of course.  
Yes, we share the challenges here on this thread, but because of that, how sweet to share the good stuff!

Love to all - Amy

ps Got the dog groomed yesterday. I felt I had to have it done before I have surgery. How funny is that?

JudyNaomi

Amy, what a beautiful post and so true in so many ways. Love the fact that the dog has been groomed for your surgery! Smiling....

Have a great weekend all, Hugs, Judy x

hrf

I spent the entire week before surgery doing things so I wouldn't have to think about doing them after. If I still,had a dog I would probably have taken her for grooming too. I'm still in hospital. They wouldn't let me go yesterday but am going home today for sure. Post op pain will last for a while but as long as it gets better very day it's manageable. I can now get out of bed by myself so I've made a lot of progress.

hrf

I'm home. A little shaky and weak but home.

AmyIsStrong

WELCOME HOME!  So glad this is behind you.

Had my little 'procedure' yesterday. It was supposed to be NOTHING...so I didn't give it a thought. Once I got there, it wasnt quite as 'nothing' as I expected. Procedure itself went fine though. Details to follow. But I would say that I planned to use it as a dry run for the surgery next Friday, and I would say I flunked. Sigh.

Going to work in the garden a bit. Will write details later.

Just glad Helen is home and can start recovering. A week from today, that will be me too.

hrf

Amy, I feel for you. Let's hold hands and help each other.

JudyNaomi

Welcome Home Helen! Hope each day is easier for you. Take your time and look after yourself. Sending you (((hugs))).

Amy, what happened? I hope you are ok. Good that the procedure went ok.

Sending everyone hugs, hope you are having a great Sunday!

Judy x

AmyIsStrong

So here's my story...As i said, the surgeon said this tiny little bump was 'nothing' but she wanted it off because it was on the scar line. No big deal, in the office, etc. So I didn't give it a thought. My husband asked if I wanted him to go with me, I said no with out a second thought.

So I got there, went to the reception, she said "Oh you're here to get your port out?" I said no....  Turns out I had to go all the way to the other side of the cancer center to a 'procedure room.'  Now that is in the older section of the building, which was the only part that existed back in 09 when we went thru everything. So as I walked over there, I had SO many memories (all bad); diagnosis, genetic testing, biopsy, radiation, lots of blood work....  by the time I got there I wasn't feeling so good.

So the next receptionist says "So you are here to get your port out?"  I said no.....  OK so I finally go back with the tech who does height/weight/bp/temp and says ..... "So you are getting your port out today?"  By this time, i am getting very upset.  I correct her. She takes me to a little exam room and puts a hospital bracelet on me. I almost FREAKED OUT. I said "WAIT - I am not having surgery, this is supposed to be NOTHING - why do I have to have a bracelet?"  She gets all nervous, starts stammering that it's just procedure, etc etc etc. I figured ok, she puts the bracelet on.

I wait in that room for about 1/2 hour. It is absolutely DEAD quiet -no one around. (They said that is b/c it was a Fri afternoon.)  So the nervous tech comes back a few times to offer coffee, tea, water. I knew she felt badly and knew I was really nervous. I am barely speaking to her at this point.

Finally the Nurse practioner who is going to do the procedure comes in. She comes around the corner, puts out her hand and says "Hi I am xxxxx. We're going to take your port out today, right?"  By this time I am furious. I just looked at her and said "no" and nothing else. I didn't offer anything, didn't say anything, just sat there. She looked confused and finally said she'd be right back. She was gone at least 10 min. When she came back, she said "OK let's try this again...Hi, I'm xxxx, We are removing a small lesion from your left breast, right?" and I laughed and said yes. It helped diffuse the tension.

So we talked a bit and I told her how triggering the whole thing was to me, to be back there, etc. So she says "So have you considered therapy to help you with this?"  And I ALMOST really lost it and cussed her out. I thought of all of you on this board, how we work together to help support one another through all our fears, how TOTALLY NORMAL it is to feel this way after all we've been through. And I said "So you think cancer patients should just waltz in here without a care in the world?"  She said no, but that I seemed to be having a strong reaction. (Ya think? haha)

So finally we go into the operating room - she is wearing a head net, face mask, scrubs. I am thinking "This is NOTHING?????"  But the procedure really wasn't a big deal. Took about 15 min, didn't hurt. AS USUAL, the anticipation was worse than the actual event. I only have a little steri-strip over the spot, and it doesn't hurt at all.

And at the end, she said "Ok I need to see you in a week to discuss the results of your biopsy" and I was like OMG, biopsy, results - yikes! I said that I had surgery next Fri (the hysterectomy) and that it would have to be before then. So I am seeing her Thurs to get results and for her to check the wound.

And now I am thinking - IF they find something in the biopsy, do I cancel the hysterectomy? I mean GEEZ - too much going on at once. Are they going to just cut me on every part of me? But I am pretty confident that the biopsy will be fine - the surgeon said it would, but then, she's the one who said the procedure would be 'nothing.....'   

So I am taking it day by day. BUT if that was the dry run to surgery, I FLUNKED it totally. Got way more triggered & upset than I expected.  
I got a xanax RX for pre surgery and I am going to take it the night before (thurs night). I'm also going to ask for something in the drip ahead of time to relax me pre surgery. I usually HATE drugs, but this time, i just dont want to be so anxious. If I have to go through it, I want to get to the other side with minimal emotional upset, you know?

So there's my story. And NO I was not getting a port out!   I dont know why they thought that - I have somewhat of a fear of medical mistakes, and this did not help with that!

Nice weekend though.  And a super busy week getting everything done pre surgery, so I know it will fly by.

Thanks for reading along.

Helen, it's been a few days  now - how are YOU feeling?

hrf

Amy, I totally understand why you would be upset. It's too bad that some of these people who work in health care just don't get it.



So today I had to go to the ER. Turns out I have a uti. Probably got it from the catheter. Now I'm on antibiotic and hopefully it will clear up,the infection within a few days.



I know all of you will understand when I say that when it comes to our health, it never seems to go smoothly.

JudyNaomi

Amy, sounds like you had quite a day and a very emotional one at that! But I do feel that I need to say to you that you did not "flunk" at anything at all! You are completely entitled to get upset over things especially when it involves BC related trauma. The fact that the staff were not informed and made the same mistake over and over is unacceptable and again, does not mean you flunked anything at all. Take it day by day, try and take it easy this week and prepare for your surgery in your own time. Please let us know when you have the biopsy results.

Helen, sorry that things are not running as smoothly as they could be. I hope the infection clears up soon and you can continue on the road to recovery.

Sending hugs to you all, Judy x

AmyIsStrong

Judy - you are right. I didn't really 'flunk' of course. But I WISH I had the capacity to stay calm and unemotional in those types of situations.

I had my preconsult with anesthesia this morning. Went fine. 
I hope the rest of this weeks goes quickly.

And Helen, one good thing about UTI's - the antibiotic seems to work SUPER FAST - I am hoping you start to feel better by.....TODAY! Let us know.

AmyIsStrong

So....as if everything else isn't enough, today I got a call from the Genetic Counseling dept at the cancer center, who did my BRCA testing back in 09 (which was negative).
They wanted me to know that there is an add'l BRCA screening available (called large rearrangement analysis) which I did not get at the time b/c ins didn't pay for it, but now they do, so she wanted to offer it to me. And if it is positive, she said, then we can discuss getting my breasts removed.

I feel like they are chopping me to pieces.

Rationally, I KNOW that is totally premature. I don't even have to have the test, and if I do, it is only 1% chance of positive. And THEN I can decide what to do at that point. But still... in light of everything else, this is too much for me. I am not going to focus on it and decide until after this surgery. 
But still.................I can't believe they called today.

hrf

Amy, while the call today was only coincidental, what I find appalling is that those things are said over the phone in a matter of fact way as if it is just an easy thing to do. I am continually appalled at the lack of sensitivitely and, in fact, the total stupidity of people who work in health care and say such things. It makes me upset and angry. I absolutely feel that I have had bits and pieces of my body chopped away over the years. I am horrified at how mutilated I feel about myself and I hate that you have been made to feel badly too. Please, Amy, just focus on what you have to do this week and do your best to put all this other stuff out of your mind. Easier said than done I know. All of us who have been through bc react differently than other people. That's why it's good we have each other to remind us that we are indeed normal people.

AmyIsStrong

Helen - a thousand thank-you's. Your post helped me more than you can imagine. How are you feeling today?
And thank you again and again and again for your words.

I feel like I've been holding my breath all day long and when i read your TOTALLY understanding words, i was able to exhale.

florbo

Helen!--Are you feeling stronger today?  I hope that your pain control is better now along with the UTI symptoms.

Amy--I'm so sorry about the lousy (for lack of a better word that is not foul) experience.  This really shows how much attention to details people lack.  I'm in the medical field and and it really makes me angry/disappointed with the way patients are treated.  What get me riled up even more sometimes is after they find out somehow that I'm a nurse, they change their demeanor.  I never tell then who I am because I want to be treated like anyone else.  OK, sorry I got off on a tangent.  But, you didn't flunk at all.  The others flunked.  Helen said it best.  Focus on yourself and how you can get better soon.

Geri--congrats on the wedding planning.  Enjoy your vacation!  I'm taking up your suggestion of counting down the days.  It makes it more bearable.

Judy--thinking of your husband.  May you have patience during his hard times.

I'm doing OK.  It was a nice break to have the weekend.  I saw the RO on Thursday, clinic day.  He said that I have one of the hardest cases he's ever seen. My case took him, the physicist, and the dosimetrist almost 2 weeks to get it done.  Everything that was against me--recurrence, mastectomy, reconstruction, left side, and the location of the tumors (between pec major and pec minor right above the heart) were what they had to work around.  I'm also getting the IMRT procedure which is the fanciest and newest treatment because the proximity to the heart.  Basically, they pulled out all the bells and whistles to zap me. 

hrf

Amy, over the years you have supported me and the others. Now it is our turn to be your support team. I'm glad my words resonated with you.

Judy, how are things going for your husband? 

Florbo, sounds like you have a great team who are going to take good care of you.

To put this surgery into perspective, the discomfort and pain are LESS than the pain I was experiencing over the winter when the situation was at its worst. I'm doing ok. Taking pain meds as I need them but trying not to do too much. Taking it easy --- just staying home and resting. Hopefully tomorrow if the weather cooperates, I'll try to get out for a 10 minute walk. My kids have been good about bringing dinner over and checking up on me. I even took a nap this afternoon. Staples will come out next Monday. Really just need time and walking to get my strength back. It won't happen quickly but it's ok. My son's wedding is middle of May and I'll be able to walk down the aisle.

JudyNaomi

Amy, the lack of sensitivity and tact in the world of health care is universal unfortunately. When I received the call about my surgery date change, they may as well have been moving a dentist appointment, I was furious about it. But this week, you do need to focus on Friday's surgery and getting past that. As hard as it may be, we need to take one step at a time. I know how it feels to be minus several body parts, it is not fun at all. Your reaction is totally understandable and we are all here to back you up on that.

Helen, hope you are feeling better today. Good to hear that you are managing a short walk and resting too.

Florbo, hope this week goes ok for you. Thinking about you.

My husband is still home, off work. He is feeling a little better, but still has the symptoms of the Bells Palsy, so is finding it difficult to eat, close his eye and focus or concentrate. Thank you all for your good wishes.

Back to work now, sending you all hugs, Judy x

hrf

Thinking about all of you. I feel stronger every day. I even went for a short walk by myself to enjoy the spring weather. Can't believe how much I have improved in just a few short days. The doctors and the Physio all said to walk, to move, and don't lie in bed. Even though it hurts at first, it makes a huge difference. Amy, as soon as they allow, get out of bed even though it will hurt like hell. They will hold you the first few times but you will recover much faster. I was told most patients don't want to get up and it becomes a battle. Take the pain meds, drink lots of water, and get up at the first opportunity.

JudyNaomi

Helen, thanks for coming by. I am so happy to read that you are feeling stronger every day.

One of the reasons I moved my surgery to October was because I wanted to be able to get out and walk and I was worried that it would be too hot in the summer to do that.

Amy, how are you doing with your pre surgery preparations?

Florbo, hope you are feeling ok today.

Sending you all hugs as always, Judy x

AmyIsStrong

I am hanging in there.  Tomorrow is my clear liquids only day. Then Friday I go in early.

So tomorrow I see the nurse prac for the biopsy results from that little thing I had removed last week, and a few client stops to take care of last minute things. VERY full day (my husband will come along with me) and then home to pack my bag and go to bed early.

I am actually looking forward to getting this thing going already. The waiting around is the worst!

Helen - I am glad you are moving around.  I will take your advice and do so also. I am not the type of person to lay around, so even if it hurts, I will push. My challenge will be resting ENOUGH, as that does not come naturally to me. My one daughter comes on Sat and the other on Sun. I told them that their assignment is TO DOTE on me. They agreed. So that will be nice.

hrf

Wishing you all the best, Amy. Hopefully by this time next week we'll both be able to say it's behind us.

JudyNaomi

Amy, hope today runs smoothly for you and wishing you all the best for Friday. We will all be there with you, holding your hand. How long will you be in the hospital? Let us know how you are doing when you can. Sending (((hugs))).

Helen, how are you feeling today?

Hope everyone is doing ok, hugs to you all, Judy x

hrf

Amy, thoughts are with you.



I'm doing fine.

AmyIsStrong

Thank you all so much. Made it through today fairly well.  Got a call from the surgery scheduler and they put me on hold and i almost panicked thinking they were going to reschedule or delay it. It made me realize how much I want to just GET IT DONE already! But no delays, they just had a few details to review. So I will be there 6am tomorrow for surgery at 8.

I am going to put that seasickness patch on shortly, need to wear overnight to get the benefit after I wake from the anesthesia. Very curious to see how much it helps. I HATE that nauseous feeling, so if it reduces it, that is a huge blessing.

Will put up a post when this is over. But if there is nothing till Sat, don't worry. I just might need a little time.

OH - also, the biopsy they did on that cyst they removed last Fri was normal (no surprise there, but still...YAY!). And when I was in there today, I asked more about the genetic testing and got some useful info from the nurse practitioner. More on that later, as I am not going to make any decisions until after this surgery is over.

Love to you all. 

JudyNaomi

Amy, good news on the biopsy! YAY indeed!

Sending you good vibes for today from all the way across the ocean .

Helen, hope you are feeling ok today.

I am looking forward to a rest this weekend, dinner tonight at friends and the rest of the weekend should be quiet.

Wishing you all a great weekend! Hugs as always, Judy x

hrf

Amy, even though expected, still good to get that final report. Will be looking for you over the next few days.



I'm good. Staples come out on Monday.

AmyIsStrong

I did it!!!!! Much less difficult than expected. Went in at 6am, was out by 5pm. Absolutely no dizziness, nausea, or pain upon waking. That was a huge relief!



Frozen section biopsy of the uterus was all benign, so no nodes had to be removed.



Definitely sore this morning but manageable. I can't believe it's over. I am SO relieved.

Let the healing begin. Helen I will get up and move around today, as per your direction.

Lying in bed is fine, and standing is fine,, it is moving between the two that hurts!



More later. Just wanted to let out know. Thank you so much for the love and support!

Amy

hrf

Amy, so good to hear from you and to know everything is good. I know exactly what you mean about the moving but you must do a little. Don't overdo. Just a little at a time a few times a day. Have someone with you until you feel steady enough on your own. Take the pain meds.

JudyNaomi

Amy, so happy that it is behind you! You sound upbeat and positive which is a huge relief. Good news on the biopsy too. Take it slowly when you walk, and take care. Look forward to hearing from you again soon.

Helen, hope you are feeling better each day.

Florbo, wishing you a manageable week ahead.

Had a very difficult weekend with my husband. On Friday afternoon he went to watch our son play basketball and it was very noisy with all the cheering and drumming etc. Anyway, it hurt his ears so badly that he nearly passed out. I was out of town and came back to take him home. His head was exploding...he went to bed at around 3pm on Friday and got up again at about 11am on Saturday. It was very worrying, I wanted to take him to the ER but he insisted that he just needed to rest. He took some painkillers to dull the pain and just slept. I went out with the kids to our friends, but didn't stay too long, I was worried that he was home alone.

He is a little better today but still not at work. He saw the doctor this morning and she said that this is one of the symptoms of Bells Palsy and he just needs to stay away from noise for the time being; he is a school teacher so that makes going to work difficult for him. He is so frustrated, but he needs to let it heal and it may take some time. So, a bit of a traumatic weekend for all of us, but thankfully/hopefully, it is behind us.

Will come by again soon, Hugs to you all, Judy.