August 2013 Surgeries

Thanks poodlemum, you re so right. Even if I get hooked on them I can wean. I need to get more rational with this and you guys tend to keep me sane(r). Hope you are having an ok day.

Ativan is actually one of the most addictive benzodiazepines but I'll drive off that bridge when I get to it. The doctor knows I won't abuse them so I have a 3 month supply and even if I did get addicted I believe (as do you) that they are really necessary now. Because nothing has been happening the last couple of days I haven't needed them but will take them for sure to get through the chemo and the rest of this week if the anxiety gets too much.

I come from a long line of addicts (cigarettes and alcohol)....my drug of choice is sugar...so I am hyper vigilant about it. My sister who smokes and drinks got mad when I said I was afraid to take them in case I get addicted and said "so what if you have to take them the rest of your life?" Never thought of that.

It is good to hear that they are effective for nausea. whew.

You're right Lisa. I actually took one today because I got a last minute dentist appointment for a cleaning. I felt much more relaxed and even walked home instead of rushing. My dentist gave me some samples for mouth dryness too so that was nice. She gave me biotene mouth wash, gel and tooth paste and some other kind of gel. I am starting to accept that chemo will happen. My wound is down to one and a half centimeters and although it won't be closed it will be close.

good luck to all those starting and those heading back to the bar. xo

Wrenn - that's great news on your wound.  So when is your first chemo?

I got the call to be there Monday for 10:45 I see the oncologist on Friday at 9am. I go for blood work at 8am so I assume he will have the results at 9. I am feeling more energetic so I guess my levels will be ok. I am making lists and checking them thrice to be sure I have everything in order.

I feel like you women have propped me up and I am really grateful. I am sure I would have given up on it all by now for sure. How can I back down when you are all so strong? xoxo

I'm back at work f/t-just feeling a bit tired! Now, I have more Drs appts-infectious disease, GI, BS and PS-oh well!

Wrenn-you will do just fine-just keep moving forward!!!!

Babs

Good morning everyone. My biggest problem today was that my new Keurig machine didn't work. I was thinking how nice it was to have a first world problem for a change. I actually got pretty worked up about it thinking I couldn't have my morning ritual coffee but then remembered I had a Keurig single cup put away for my daughter's fiance and I took that out to get my coffee fix.

I really have been obsessing about chemo but thanks to you women am not feeling that scared now. I hope I don't drive y'all nuts with "is this normal" next week once I start. I intend to use lots of anti anxiety meds so maybe that won't happen.

I hope everyone continues to be 'ok'. I worry when someone isn't here for a few days that they are having a rough time but everyone seems to come back and it is so good to see that we do survive it.

Just thought I'd drop a line with an update.  My regular appt was Tuesday as usual.  Things have been wonky the past week as you guys know with opening and closing and the grey colour. 

He did his usual cleaning of the wounds and then decided to try something else to try to get them to scab. I was so hopeful and everything looked good.  By last night I was in a lot of pain but didn't really think much of it because that's the norm for "hell week". Then I put my hand up my shirt and my hand was soaked.  Went into the bathroom to take a look and both were open and pouring drainage. Obviously there's still a lot of drainage - just don't understand why they opened and closed three times over the past week and a half.  I didn't change the dressings today but tipped the bandage a bit to take a peek.  Pouring out like it was a month ago. The areas around the wounds still feel like giant bruises.  

So I mark my 3 months today - the 22nd.  I'll change the dressings tomorrow.  Keep me in your prayers that they will have improved a lot by the 10th. No word on my schedule for the holidays.  I guess I find out next time.  

He's getting discouraged but he forgets my disability.  I worry that if I do need that second surgery in the new year that he will refuse because I'm obviously a slow healer.  I like him and don't want to have to start all over with another surgeon.  I've spent 4 months now with him and despite his language limitations some days I'm comfortable with him and I like my nurse.  

I've got three bald spots from the sores but the sores are healing up so maybe my hair will start to grow in those spots once they are gone. 

Still can't eat much but I try.  The constant nausea is gone for the most part,  but does come back from time to time throughout the day.  I'm used to it now though. 

Anywho that's my update. 

Hope you ladies are doing okay. 

Wrenn - I got a good chuckle about the coffee.

Chin up ladies and you're all in my prayers.  

Wrenn - Please feel free to use us for any and all questions or concerns you have.  Many of us are either in chemo now or have completed chemo in the past so we are more than willing to have you shoot us anything that comes to your mind.

We've all been together for nearly 5 months and I thing we all have a good understanding of each individual here.  I can say I certainly feel more comfortable posting questions, concerns, and my ups and downs here where women know me much better than at the chemo thread (those threads get so incredibly huge that there is little chance of really getting to know anyone there, that's just my opinion). 

Hope your chemo went well - again, let us know when you feel up to it!

Wrenn  quick thing to ask about Blood Builder.....it has Vitamin C in it which my MO commented on.  She said it was fine to use as the amount of Vitamin C did not exceed the limitations she has for that or antioxidants being orally taken during chemo.

Let you MO know it has Vitamin C - my bottle shows 60mg.

We are all glad to help you any way we can, Wrenn.  You have had a very long journey to where you are at, we know you are nervous but always remember we are here for you and will be looking in often to see if you have any questions or concerns posted.  You are FAR from alone in this!!!!!!!  We got your back, the best we can and it sounds like you have a good medical team in place now so we will all work together to get you thru this as easily and painlessly as possible!

Keep a smile on your face.  Try to keep that positive attitude and don't let your nerves get the best of you!

Do you know what time chemo will be on Monday morning?

Wrenn - you have been tremendous support to all of us!!!

Regarding the ginger your MO spoke about....as I stated after my last chemo, I had horrible, terrible, lengthy fatigue (4 full days longer than the first chemo - which is why I had not posted much (and then once feeling well enough to get to work, I was so busy I was completely wiped out when I would get home!).  Anyway....yesterday before chemo I talked to my MO about the horrible fatigue.  She suggested that I take the Dexamethasone 1x a day on days 4-6 post chemo.  Apparently what I felt is known to happen....from the studden stoppage of the Dexomethsone!  I never would have thought that, but it makes sense.  So I will take 2x/day for the 3 days following chemo and 1x/day for 2-3 days.  In addition - Ginger.  But not just any Ginger.  She pulled up a study that shows 2000mg/day of AMERICAN Ginger has shown great success in helping with Chemo Related Fatigue. 

So, I stopped at Walgreens on the way home and they sell no Ginger (that's weird, I thought).  So, yes, you guessed it, I ordered it from Amazon.com.  I should have it tomorrow so I will begin taking in on Monday or Tuesday (when the fatigue really starts to set in).

Your chemo bag....you know, you really don't need much. In fact, I brought so much based on what I had read at the chemo threads on my first visit and felt really foolish!  All I bring with me now is:  small pillow for behind my neck so I can rest comfortably; my Kindle; a travel mug full of crushed ice to suck on during the A/C push; a pair of hospital socks (w/vinyl treads so I don't slip when running to the rest room) because I'm just not comfy sitting there for 2-3 hours w/my shoes on; and usually a granola bar or protein bar.  My wonderful husband always leaves once they get the IV's going and comes back with either muffins or bagels and cream cheese - and I usually eat one while the Cytoxin is running (since that seems to take the longest).  The infusion centers have blankets - mine actually has heated recliners as well so I don't even need a blanket.  That's it, Wrenn.  You don't need anything else.  If you don't have a Kindle or a book you want to read, perhaps you can pick up a Crossword Puzzle Book - something to make the time pass.  At the infusion center I go to, they have DVD players w/DVD's to help patients or their guests pass the time.

I actually prefer my husband run out and do whatever he wants during my chemo.  Why?  I want to relax; which means reading or doing a crossword puzzle.  I simply do not feel like visiting - although I do with my chemo nurse when she is doing the A/C push mostly.  She had at least 4 of us she was responsible for yesterday so she had little time to visit which was fine....I wanted to rest or sleep if possible.

You'll find what makes you most comfortable.  I might suggest that you not look at the bags of meds hanging or even to look at the IV in your arm.  Keep you mind elsewhere (i.e. Kindle or Crossword Puzzle Book) and don't pay any attention to what is actually happening.  Unless, of course, something doesn't feel right, then speak up immediately.  I've not had any issues - well, not during chemo anyway.  This last time I had a lot of anxiety the night before and day of chemo.  I couldn't eat because my stomach was doing flip-flops - not because chemo was making me nervous....it's what I know about how I will feel several days after chemo.  But I feel better now that my MO knows how poorly I was feeling and we have a plan in place to take care of it, hopefully.

And I want to remind you of what my MO told me right before my first chemo:  "if you even have a thought in your head that is saying "should I call my MO?" then that means you should be on the phone calling your MO!  They are staffed 24 hours a day, 7 days a week.  They have a HUGE bag of tricks to help us through whatever problems we might be having.  So please remember that advise, Wrenn.  To me, she could not have made me feel more comforted and cared for by saying anything else.  It has made/does make a world of difference to know they are simply a phone call away, anytime I might need them and WANTING  to help.

Any questions, here is your chance, Wrenn.  Others have been thru more than I here and I'm sure everyone is willing to answer any questions you might have so let them fly.....

Wrenn - I'm going to assume it has something to do with the differences in our chemo, but I take NO dexamethasone before I show up for chemo.  The first drug in, 3 4mg tablets of dexamethasone.  Then the anti-nausea meds, then the chemo drugs (with saline running the entire time).  But I take no pills before chemo day.

I wouldn't worry about the dexamethasone causing a need for your Ativan - if you find you need it, then take it.  But the worse thing about the dex is the inability to sleep (which is why I think it weird he has you taking 2 at night - Good Golly, I don't know how you will sleep with taking steroids right before bed!).  Unless Ativan makes you really, really tired....

Dexamethasone helps with inflammation - I don't know your medical history but Taxotere (I believe - I know this is true with Taxol) causes muscle/nerve pain and that may be why your MO has you taking more that the teaching nurse said you would be taking.  Remember, the MO is highly trained and is taking your entire health issues into account when deciding the dosage of chemo and all medications related to offsetting the side effects.

I'm glad you are "excited" and not overly nervous.  There is no need to be nervous....it is what it is, and you know what it does and what side effects COULD happen.  Again, most won't affect you.  And you don't know which ones will until you get started - so why worry?  You're going in with a good attitude and w/much less anxiety than I expected.  The Ativan must really be helping and if so, I'm glad you decided to start taking it a few days back.

Let any of know if you have questions!

Great News, Babs!!!!!!!!!!!!!!!!!!!!!!!

Thank you guys, I finally have the dexamethasone schedule right. I will ask when I get there about more drugs for nausea. Lisa, thanks for the tip on taking too much stuff. I always do that when I travel and was about to do the same. I had a huge tote bag ready to pack with stuff but now I think I will just need my backpack.

Honeybair, i have posted in the November group but I prefer this one. :-) Guess I should get to know the gals there but I am comfortable with you people here. I realize you might not be posting soon because your lives will all be back to normal. :-) Will we ever know "normal" again?

Poodlemum, I feel so bad that you heal so slowly. You sure are patient with it all. I hope it starts to move along a little quicker for you. hugs to you.....and to all of you brave soldiers.

i know what you mean. We all started out here not knowing what was happening. I am at an advantage being delayed because i can see how you have all coped. It really kept me from giving up. I am so grateful. My 4 sisters wanted me to get chemo but it was you women who inspired me to keep going forward instead of giving up.

I have trouble remembering who everyone is on the other forum....chemo brain came early

I hope everyone has on ok weekend.

I might get my head shaved after neulasta shot on tuesday in case i feel too tired to go out later in treatment. Nervous about starting steroids tomorrow but will remind myself that it is all temporary