August 2013 Surgeries

in life it's who you know that counts!!! When the hospital said they needed to call in a gastro dr I told them I had one and he's on staff here. My husbands best friend just came on staff last year. So he came to see me today about an hour after the test. He examined me and left to "read my chart". He really didn't do that. He knows me well and understands how anxious/crazy I can get. So, he went down to the lab and made them read my pet scan. The preliminary reading shows nothing to worry about. I will need an MRI of the pancreas since the duct is enlarged. But, it's not cancer and I can breath again. I do love this man. Throughout my journey he has been amazing to me and has always gotten me the best care I am sooooo relieved. Now this infection needs to end so I can go home. Maybe tomorrow??

Thank you all my sisters for always being there. Having this website is such a godsend!!!' Were lucky to have each other to keep us strong and as sane as we can be in this process

Thank you all!!!!!

Thinking and praying for all of you going through so much right now. KBee so glad you are now home. Babs we are all pulling for you. Hope your pet scan results come soon! Wrenn with your history how do you stay so patient? I would be going crazy.

Babs - That is such a relief!  Our prayers are answered; now let's just get you well and get you back home where you belong!  You are one lucky lady to have such a dear friend as a doc at the hospital you're at.  Try to get some restful sleep tonight, Babs.  You've had a stressful few day!

KBeee - well......DH did keep the home running in your absence......gotta love our men!!!!  I bet it feels good to be home - but don't overdue it!!!  The cleaning can wait; you need to take care of yourself so you don't run yourself down when your body is working so hard to get back up and functioning!  You had a scare there and I'd hate to see anything happen to you again.

Coffeelatte - you are very sweet in your kind words!  It's so nice to hear from you when you are able to get a connection to post!

Babs  - I've been home feeling terrible since last Thurs chemo.  I just jumped on to see where you are at......are you still in the hospital or have you been released?

And regarding that infection, any word on if the TE will stay or if it has to come out?

Babs - so sorry your being kept hostage for another couple days (lol!).  Sure hoping things resolve soon so you can get back home.

Since you're kind of stuck there....can you tell me how different Taxol chemo is from A/C.  The A/C is really kicking my bum; I had really hoped I wouldn't have a replay of my first treatment but this one seems even worse.  I'm very weak, fatigued, and feel like my legs will just give out on me after 5 minutes of being up and about.  My counts were all very good before this last chemo, other than I actually had low sodium, so I know I went into this last chemo well.  I was told to expect fatigue...and I am in spades!

You had commented in the past that Taxol is easy compared to A/C and I'm looking for some reassurance here.  I can't deny I've had the terrible thought of "I  can't do this" many times over the last several days.  But that's just my discomfort talking, I know.  I'm doing this; I have 2 A/C done and 2 to go and will not quit now.  But want to know what you meant about Taxol being easier.

Hoping you can reassure me.....it's been a really rough week.  Obviously not as bad as yours or KBeee's - but I think you know what I mean.

I will have my first Taxol next Tuesday. Every week!

I cannot even imagine it being worse than the 4 dose dense A&C & Neulasta shots. UGH. Here's hoping! All the infusion nurses say that while it isn't a walk in the park it isn't as bad as the A&C.

Still in the hospital-maybe I'll be going home tomorrow or Sunday. The PS wants the red on my arm gone before he discharges me.

BORED!!!!!!

Poodlemum-wierd is right!

No kidding Babs.

I'm in as much pain as I am during hell week - so I'm not looking forward to next week (more than usual) if I'm starting at this level of pain.

The brush cut is helping with the sores on my head. It's not completely a brush cut, where the sores are, it's more of bald spots :-( For those of you who have lost your hair, how are you managing with the cold weather? I bought some nice caps (on eBay, I just looked in the Hijab category and found some really nice fancy caps that cover everything and tie at the back). Outside with the winds I've got a toque over top of the cap and then the hood of my coat. I'm glad I finally went and did the brush cut, I didn't realise how many sores were on my head until I did. The sores are from not being able to wash my hair very often (I can't use the dry shampoo because I'm allergic to one of the ingredients) plus one of my meds apparently has caused some of the problems.

Wrenn - weren't you supposed to be meeting with your BS or Oncologist (I can't remember - chemo is really making my memory so foggy I feel like an idiot most of the time!) on Thursday?  To discuss your progress and to look at the new issue that developed about a week ago.  What was the outcome of that visit?  Is everything OK?  Did you develop an infection again?

I've been away from posting a bit this past week due to extreme fatigue but I've tried to keep up on the new posts (and to check the progress of both KBeee and Babs hospital admissions) but I don't think I saw a post of how your appointment went.

Are you doing OK and are you still going to go ahead with chemo, again - forgive my memory but I think I recall you said end of this month, as planned?

You, too, have had such a long recovery with so many different complications thrown in the mix, that I worry how you are coping.

It's kind of crazy. I'm still in the hospital but am really feeling fine. Just my arm is red. While I feel good you are all experiencing issues-so sorry to hear that!! Since I always look for the silver lining mine is that because I'm in the hospital in the city my daughter comes every day! I would never be seeing her as often if I were home. She leaves for 2 weeks in europe later today (biz trip) so it's time for me to get out of here!!!! I'm so very bored!!!

I wish everyone an easy weekend with little or no SE's

Babs

Babs, love that you found a silver lining. Now that your daughter is leaving I hope they spring you soon. I like KBeee's idea of online Christmas shopping. It has to be so frustrating to be stuck there when you are feeling ok.

Poodlemum, what a nightmare for you. I am so glad you have this forum to come and talk. I know it helps me and I really hope things improve for you soon.

Lisa, sorry to hear about the fatigue. I like the way you describe it because I too was thinking "ok, I'll be a bit more tired. No big deal". But now I see what people mean by "fatigue". Ugh And I can understand you having to rest in the mall Pam. You seem to adapt well so I hope you got some shopping done in spite of it.

I saw the surgeon on Thursday and he said the pocket open is about the size of the tip of his thumb but thought it would be better to get going on chemo because a non healing wound is less dangerous than avoiding chemo.

The wound had started to bleed a bit and although the home care nurse said it was fine because it meant the wound was getting more oxygen (?) she did worry me when she said to call right away if it bled lots. I am still so paranoid of gushing blood since it happened before that she ruined my day. :-) I am seeing the nurse (probably a different one which means each day brings a new perspective) and hope the bleeding is minimal. I don't look at the wound and the dressing doesn't show the drainage.

I think much of my problem is related to anxiety. I have a sensation of heat under my arm (wound side) that drives me crazy and every little twitch and sensation makes me worry that it is bleeding. I know there will be sensations with nerves regenerating but because of my couple of bleeds they make me nuts. The surgeon said he thinks the heat might just be regeneration but he is not sure. He says he can't say for sure whether the hematoma has cleared up but that he can't feel any pockets of fluid or any lumps so he thinks everything is ok. He did say "I am usually wrong" which I thought was cute.

I am also tired of being uncomfortable and I don't think it is related to the wound but just normal healing after BMX. I still feel very tight across my chest and I think it is normal to feel anxious with any tightness in the chest area. I am also lumpy under my arms.....might have motivated me to not get so fat if I'd known this would affect surgery outcome.

I am getting more anxious as chemo day approaches so I am so glad to be able to come here to see how you guys are doing. I just hope I can be as brave. I may have to start taking anti anxiety meds soon. I was holding off until chemo but haven't been sleeping well.

I think I am lucky to avoid the A drug. It sounds like it is a bit rougher to manage.

I hope everyone continues to soldier through this and it looks like you all are. Thank you again for the support and generous sharing of experiences. Hoping for a good weekend for all of you. xo

sorry this is soooooo long

yay for being sprung and what great timing. I can imagine you made things easier for your daughter. Glad you came to your senses about the wedding. . Rest rest rest. Have a good evening. I have ativan and may join you relaxing tonight. Take care

Babs - so glad you got sprung and you were able to spend that time with your daughter. 

Lisa - here is where I got some of my coverings - they are so beautiful and make me feel better just putting them on and knowing I look nice fancy tie back headcovering - I don't like the grey ones for my own preference so I got 4 different styles of the black ones and one of the wine ones - the ones with the sparkles. Do you have the url for the fleece ones you mentioned?  I was talking with my Mum and she said it might be a good idea to see about getting a couple. Were they expensive? 

Babs - HURRAYYY!!!!!  That had to be so nice to hear "we're letting you go home".  I know from past experience how terrible it is to be stuck in a hospital for a week so I really felt for you.  That was wonderful, too, that you were able to run over to see your daughter before she had to leave.  And, I agree with everyone else, good call on NOT going to the wedding and you should be proud of yourself for making that smart call.

Wrenn - I think you should start taking the anxiety meds you were given.  If your feeling the anxiety now and not sleeping, it likely is only going to worsen the closer chemo day comes, so start your meds, and get sleep so you are in the best possible shape for your chemo.  That's just my advise.....

That heat feeling you have; if the BS said he's not worried, perhaps you can try to put it out of your mind?  For maybe a week.....and then see if the heat feeling is still there.  I guess what I'm saying is that the mind can sometimes play tricks on us making us believe we continue to feel more pain in an area that is actually "remembered" pain and not the actual pain level you are feeling (I hope I explained that so you can understand).  I'ts how our brains work sometimes (I know this from so many meetings with doctors about my headaches).  You do suffer from anxiety so I think your mind is always going to every little pain you feel (VERY NORMAL given your cirucumstances)...so perhaps once you start your anxiety meds the feeling might lessen.  That tightness feeling I agree w/KBeee.....that's a normal feeling from all I've read due to the mastectomy.  OR it could be Post Mastectomy Pain Syndrome.  My doctor diagnosed me with that due to all the pains I had across the chest and down the arms - simple remedy.  I take Lyrica at bedtime and the pain is almost now non-existent.  The syndrome has to do with all the nerves that were cut during the surgery.

Poodle-Mum - here is the link to the caps I got.  They are actually very inexpensive!  Only $3.25 each and they are worth so much more!  Mine are warmer that the ones the military provides my husband for work; and that's saying something.  Hope you like them if you get them. 

http://www.amazon.com/gp/product/B0053ALO66/ref=oh_details_o02_s01_i03?ie=UTF8&psc=1