August 2013 Surgeries

Aviva – that’s great news!!!  I’m dancing with you!!!!  

My therapy will be “dose dense”; will start with Adriamycin & Cytoxan every 2 weeks for 4 doses followed by Taxol every 2 weeks for 4 doses.  Since I only have 2 weeks between therapies, I need Neupogen to help my body build back up the white blood cells.  Not normally needed when therapy is 3 weeks apart because the body can build it back up on its own; but not in 2 weeks.  Problem with this?  I’m an hour from the clinic….Chemo for 4 hours (plus 2 hours drive time there and back) one day and then either driving down again the next day for the Neupogen OR I can be given the med w/syringe to give myself the shots in the belly – once each day for 4 days following chemo.  Sounds nice, huh?  I don’t think I can do it – I gave myself Enbrel injections for months and months but that was the spring loaded pen and was in my thigh once a week then once every 2 weeks.  But my belly?  Good Golly what’s a girl to do?

 Well, I asked my Insurance Care Manger to see if they can send the medication in the one shot formula to my family doctor who is only 20 minutes away.  I’d be perfectly fine going there and letting them do it (they did that with Methotrexate years ago – it had to be administered by a nurse and instead of making me travel 2 hours for an injection, they sent the med to family doc and I buzzed in there and only took 40 minutes out of my day.)  OK – gotta have another problem, right?  My family doctors clinic is losing their RN this week – you couldn’t make this stuff up!  Won’t have a replacement when I start chemo so – who knows?  Care Manager is going to see what she can come up with to keep me from having to do so much traveling.

And my day continued to get worse.  Chemo moved to Thurs the 26^th because need to PET Scan and EKG and they couldn’t get scheduled until the 24^th.  So next week Tuesday all day in appointments, Thursday 4-5 hours at chemo w/2 hours drive time, then a trip down on Friday for Neupogen if they can’t find me a better option.  There’s more – I got my flu shot today (my employer hires Home Health to come in and do a Flu Clinic for all employees trying to keep everybody healthy for the flu season) and I knew I needed it before starting chemo, but I’m overdue for Tetanus so I have to get that done this Friday.  There’s even more…..MO never called me back but I got a call from Anesthesiology to interview me for Friday’s surgery (which I’m not having but nobody seems to understand that!).  I thought my head was spinning yesterday.  Really, how the heck did everything spiral so far out of control in a matter of an 8 hour work day?  I’m a wreck (and I must be so overtired because I couldn’t sleep – can anyone say stress?)  

Tomorrow has to get better…… 

As always, my thoughts and prayers with all of you.  And again, Avita, I am so very happy for you!

Lisa

All I can say is wow!  Tomorrow MUST be better.  FYI I had the same chemo regiment so if you have any questions at any time just ask.

Update:



We did a 1km walk this afternoon. My boy was so happy to be out again with Mummy. It's about half the length of our usual walks we do everyday. The first half I can do on asphalt and the side of the road because they are side streets. The second half had to be done on sidewalk. Total time? Not quite 2.5hrs. Not bad, eh? Of course I don't think anyone has seen a power chair move that slowly! Lol



I only took one demerol with my pills last night and when I woke up in the middle of the night I decided to do my therapy while I was awake. It is so much better doing it lying down. Took about 30 minutes. I finally did fall asleep again and when I woke up I barely had the pain that I always wake up with. My demerol would have worn off long before.



Today, no Tylenol and just discomfort pain until the final 5 blocks. I came home and rested. Just took 2 demerol and am 3/4 crashing which is awesome.



I know I might need a down day tmw but that's alright - I actually experienced freedom today and it was wonderful. I loved watching my little guy walking beside me and it made it feel almost like the past 2 months didn't happen.



I won't overdo anything and I'll be sure to rest. I'm getting used to feeling these new boobs with the therapy and I'm glad that even though they are only going to be AA/A when everything is healed I'm glad I didn't get the implants (I just mean for me, for those ladies who have chosen implants or didn't have the option I had, you've made the right decision for you).



The oddest thing is I've yet to find wearing clothes that fit me before when I was a D comfy. They feel tight even though I look in the mirror and see they are too big. One step at a time to l learn this new physical image. I had the same problem when I lost 80lbs. A year later I'd look in my mirror and still see huge. Now I see small but feel huge.



The mind sure likes to play tricks.



Sorry for the long-winded post. I've read everyone's posts today and you are all in my prayers as always.

I have an update - apparently I got my point across and I do NOT have to have a port and the Friday surgery has been cancelled (good thing because I had no intention of showing up!).  Hurray!!!!!!  I called the MO office during a break at work this morning and they said she has a message in the computer that the surgery is to be cancelled - I have to say it would have been nice if someone had informed me.

Reason my sides felt like they were burning - well, changed the dressing and the right side hurt the worst and sure enough, there was pus on the dressing.  I get infections so easy yet held off any major infection for 6 weeks w/the dang drains!  It just looks like a surface infection and we're keeping neosporin on them to keep drawing out any icky stuff - and kept to a sponge bath yesterday and today so as not to get anything in these holes until they are closed up.  I feel soooo sorry for you Wrenn - that you are still having to keep to sponge baths for so long - just having to resort to that for a couple days has been a pain I cannot imagine the month you've had to do this.

OK - I gotta get some work done this afternoon but wanted to let everyone know the news on the port. 

I'll check in with everyone later on tonight.

Lisa

Wrenn -  what is ativan?

You gave me a good laugh about smelling funky!  It was only a week ago that I was able to start wearing deoderant.  You might want to look into Tom deoderant (I believe Aviva mentioned she got that - it's natural and a spray - hopefully she'll see this posting and be able to tell you how well it worked and I think she got it at a large grocery store).  I had to go thru the hottest humid weather here in WI w/o the benefit of deoderant and not being able to shave so.....yeah, I know what you are saying!

I do hope they give you some idea of why that drain is still showing the bright red color - I think you're the only one here that has had that so I hope it doesn't mean anything is wrong.  Please let us know what you find out!  Nobbody here needs any more setbacks - it's time we all move forward and let these darn problems be something in the past we can laugh about one day!

Good luck at the surgeon!

Lili...I hear you about the port. I have one and am glad that I do.  If you get the drug adramycin wihout a port, it can harden/scar your veins forever so they cannot be used to do any procedures as needed.  If you need to receive Herceptin assuming you are HER2 positive, you will be using that port for up to one year.  If you have to be hospitalized, the port is easily accessed by medical staff and you will not have to suffer the pain of having your hands or veins used.  The surgery to implant one is about a half hour.  I know that you are in pain from your surgery and drains, so I do understand that you have enough pain to suffer through.  

The port is the most comfortable method for having your drugs infused, that is to say pain-free.  My scar is ugly from the port surgery, but I need to use Vitamin E oil on the scar tissue.

Like you, I have the tight area on my chest and under my arm .  I saw a physical therapist yesterday and she told me to gently rub my chest area as well as my arm on the back side. Our nerves have been disturbed by our surgery and are kind of behaving erratically according to her and that is why gentle massage is good.  I constantly rub my chest and put Aquaphor cream on it and I am noticing a marked improvement.  I am sure you still have some areas of numbness as well.  Since I had no recontruction I don't have to use pain meds but I still cannot sleep in my bed but instead in my power recliner.  I am still too raw from the surgery to be comfortable lying down.

Hope my experience with my port will be of some comfort to you.  The majority of the patients where I received my infusions had ports.

Wren - congrats on being drain free. Great news about the color being ok. Hoping now they will heal up fast.

Kbee - looking forward to hearing about shaving party.



PoodleMum - happy to hear you had some freedom today.

I too have been experiencing that extreme tightness and drawing in feeling at the incision area. Someone here said it feels like tape across the chest and that is spot on. I was referred to a physical therapist by my BS who specializes in lymphedema. Even though I only had one node removed I have had cording and some lymphedema in that cancer side. I told her about the tightness and she said that even though I can't see it there is swelling that accumulates around the incisions and that too can be a cause of that very tight feeling. And just like Honeybair said, she showed me how to gently massage in little circles all around the incisions and under the arms to move the lymph. Also rub across the collarbone area. It is a light massage, no muscle involved, only enough to move the skin. It really does help. I tend to do it more late afternoon and evening because that is when the tightness bugs me most. It gives me relief better than medication; it also helps the burning feeling in my arm and pain where the drains use to be. Those post drain areas tend to hold swelling in my case. The rubbing gets that all moving too. Hope this helps someone else because I was panicky over the tight feeling.

Knee. Love it! I'm sure it made what can be a difficult day much better!

Aviva

So glad the fill was relatively easy I get mine next week and was a little nervous. FYI they took 26 of my nodes last year and told me I would most probably get lymphadema and would not get back full range of motion. Well I have full range and never got lymphedema. Do your arm exercises religiously it really does help!



Having a sad sad day today. My 46 year old sister in law lost her battle with a rare renal cancer that ended up in her lungs. She was much younger than I am. So everyone live each day to its fullest. Love your family and friends!

Babs

Babs, I am so very sorry for your loss.  My thoughts and prayers are with you.

Wrenn – I am so happy for you!!!!  I believe our little group is now ALL completely free of tubes and drains – HURRAY!!!!

Ah – anti-anxiety med.  Got it.  I had to take something for anxiety for the stereotactic biopsies as well as the sentinal lymph node injections and mappings.  Helped very well – I actually was put on a low dose between hearing “you have cancer” and the surgery.  Can’t say it really did anything, but perhaps it did.  I felt as though I completely fell apart during those 2 weeks but maybe it would have been worse had I not been on the medication. 

Glad you’re dressing didn’t soak thru.  Hopefully it keeps up that way and good to know it was nothing to worry about (hey). (that “hey” is from your southern neighbor – we are often mistaken as Canadians here in Wisconsin). 

Honeybair – I understand the whole benefit thing w/a chemo port.  But I also believe that it’s easier for THEM – not necessarily for the patient.  I will not be getting Herceptin (I’m Triple Negative) – I could if I wanted to participate in a current study but I just can’t do that (it would require weekly chemo for the 2^nd round AND weekly round trips to the Cancer Center for a year).  The study is to see if they can get sub-groupings in the Triple Negative cancer patients and there is some idea that Herceptin may be able to assist in trying to do that).  They can use my veins – they are healthy and if something happens that makes them unhealthy, we’ll cross that bridge if/when the time comes.  I respect each person’s opinion but I’m doing what’s right for me.

That chest thing I kept talking about…..well, it’s pretty much gone.  How, you might ask?  I believe it was the tubes!  When they removed them earlier this week, I hardly felt anything in my sides.  But I said to the nurse “I felt that pulling in my chest”.  She replied “Yeah, I actually could see it unwinding in your chest as I was pulling it out”.  Yeah, that was weird.  Stranger yet, that tape across the chest feeling is practically gone!  I didn’t realize it for a couple days but then I got a message from my family doctor asking how I was feeling and it dawned on me, my chest wasn’t bothering me anymore.  So – seems it was the tubes causing that terrible feeling.

I feel terrible you are not able to sleep in bed yet!  I took to my bed a couple of weeks ago but was not comfortable until the removed the tubes.  I know that “raw” feeling, though.  But I have back problems so the recliner was getting to be too uncomfortable I had no choice but to try the bed so I could try to stretch out a little – and it has helped.  But you’re at about the same time post surgery that I was when I went back to sleeping in the bed – perhaps you can try it but keep several pillows behind you to prop you up.  And a pillow wasn’t good enough to keep my knees propped up so I took some flannel sheets and folded them as a “bolster” and they stayed “put” so I wouldn’t slide down during the night.  I hope you get back to your bed soon!!!

Coffeelatte – thanks for your info on that tight tape feeling.  I’ve been complaining about it but it appears to have been the tubes that were in for 6 weeks.  The feeling is almost gone now that the tubes were removed – I will hope it stays that way.  If not, I thank you for your input and will keep it in mind if things start feeling “tight and painful” again. 

KBeee – thanks for responding to my PM – I’m not on facebook but will certainly consider joining just to see the photos!  I’m thinking of you today and praying your chemo goes well!!  I’ll be joining you in the Sept 2013 Chemo thread but I don’t want to go there until after my first chemo.  I’m sure there are experiences there I don’t want to read about beforehand……  but I’ll be seeing you there (I too will not leave this thread – I feel I’ve found some very dear friends in sharing our experiences and want to keep updated with how everyone is doing in their journeys).

Aviva – That cartoon syringe – funny!  It would have scared the crap out of me had I not known it was simply filled with saline.  My biggest fear was pain of the needle going into the port.  I, too, found it very easy and painless but it is a bit intimidating when you see it all laid out on the tray…..  I have to wait another 2 weeks since my PS wants 2 weeks between tube removal and next expansion.  I think my chemo schedule is going to push my next expansion back another week – I swear it will take forever just to get the “baby boobs” I’ve heard others have.  Oh well, I always was a late bloomer! 

Babs – My deepest sympathy on your loss.  It is so sad when bad things happen and there are no words that can truly express my sympathies so I use the only words I can.  You are so right – we need to live each day to the fullest and we often lose sight of that until reminded, usually by a death.  I hope your sister in law passed peacefully and it’s important to remember she is in peace and is now pain-free.  May her memory live on in those she left behind……

As for me – I’m all set.  My Care Manager contacted me yesterday and the Genetic Counseling has been approved so we move forward with that.  I need to run and get my Tetanus booster today.  Tuesday is the PET Scan and EKG. Thursday is chemo.  Friday – oh, my insurance company was able to get a plan in place so I can get my Neupogena injections at my family doctors office (hurray!) – so Friday I get my injection.  Also have an appt at UW to get fitted for a wig (yeah, I’ll try one just in case when I’m finally “hair challenged” I feel I need the look of hair).  So I have a very busy week ahead. 

Finally slept!  It required a little help from a couple of pills, but hey, after 6 weeks of only sleeping 4 hours a night I didn’t care.  Asked my doctor for some Ambien – it didn’t help at all the first night but nights 2 and 3 – it finally kicked in and I’ve slept 8-9 hours each of those nights.  Amazing what sleep can do to make a person feel better!  I didn’t bother asking for this help when I still had the drains – they were that uncomfortable I knew sleeping pills wouldn’t even help so why bother.  But it feels good to finally have gotten decent rest.

 Again, good luck in chemo today, KBeee.  Wrenn – I hope your chemo training went well and helped calm some of your fears! 

Hoping everyone has a great and healthy day.  My thoughts and prayers are with you all!  If I forgot anyone I apologize.  I've been busy with work and sleeping so I've not been able to keep as up to date here as I had been previously.

Lili, I am so happy for you that the drains are gone and you are feeling so much better.  Hope chemo goes well for you and that your side effects are minimal.

When I received Neulasta shots the day after chemo, I was told to take Alleve and Claritin together beforehand so that I would get no aches and pains.  They really worked and thought I would share that with you and anyone else about to undergo chemo in case your oncology office did not tell you that.

Today is my birthday and I am just happy to be alive to celebrate it.  I get a Herceptin infusion this afternoon.  Also grateful for being able to take this drug with no side effects so far.

Have a good week-end, everyone.

Babs - so sorry to hear about your sister-in-laws death. It's such a difficult time.

Kbeee - hope everything goes well with your 1st chemo today!  May the SE be few!

Honeybair - Happy Birthday!!  and wishes for many, many, many more!!

My chemo is scheduled to start October 9th. Everyone thinks it's awful because it's the week of my birthday but if what I've been reading about feeling better the second week comes true for me then I have a good chance at enjoying Thankgiving and Christmas. It's way easier to move a birthday dinner than it is to move Christmas!

I was excited to find out there were no other signs of cancer in my CT Scan.  My MO said he wasn't concerned about the area in my ovary that the Radiologist was concerned about so I've let go of some of that anxiety too but will get rid of the rest of it after I hear the results of the pelvic ultrasound.  That was a huge relief. 

There were a few other things that showed up on the CTScan not related to the cancer (ie a small kidney stone, disc and spine issues, etc) and typically they might be things to be concerned about but in light of breast cancer it seems like no big deal. Just things to keep an eye on - I'm not going to look for trouble. It's amazing how BC can change your perspective.

BS thought everything looked good, officially released me for chemo, sent a referral to PT and I won't see her again until I get my port out in the spring.

wrenn it might help trying to side sleep- and go inches at a time for awhile, by holding a pillow to your chest, or small pillow sort of between your boobage, keeps things from sliding. I can sort of do it now, but find myself moving back to my back after awhile, guess Ive slowly been getting used to back sleeping after all these weeks.

I read on the anastrazole / arimidex board that Claritin does help with pain se, so will see if that starts happening...