My Journey Begins

I'm home, at my daughter's now. Came through. This part of the journey is finally done.

Before the surgery, I was surprised to see what the surgeon marked for removal. I have the port in and am surprised. it's inside me! I thought it would be a tube hanging outside of me. I'll see how it works. Have two drain tubes. The nurse came out to the house today. They will be coming out twice a week. My grandkids are helping me all they can.

I woke up at the end of surgery  my doc said most people don't remember that! I still had the tube in my throat, no meds for pain yet, they were wrapping me up. was not very nice. glad they quickly gave me something to put me back out again. Still not eating too much, though dinner tonight was the best i've eaten so far. I slept a lot the past couple of days, that's why i'm only getting back to you now. I had to bug my daughter to let me, LOL She had to help me down stairs. It's not that many .... 6 stairs, I it's making me feel good to be on the computer chatting with you ladies.

I had a pump in the hsp for pain but didn't use it that much, it made me sick. Felt better when they took it out and just game me pain meds. Apple, you're right. The incision is not as bad as the drains and the port is rather sharp. It hurts a bit. I don't know how many lymphnodes he took out, but my armpit is rather hollow and sore. I find out that Monday. The doc said it just took them out - he is not sure just how many. I thought he would know.

So far I', triple negative er-pr-HER2- which gives less treatment options, but he said when they test the tissue from the middle, they might find something. If they don't call me by 2:30 or so,, I"m calling them.

Ok, i'm tired. I am glad to hear from all of you. God Bless. My thoughts are with you a lot.

Cheryl

Hi all, my nurse comes out again today. Glad, too. My drains are temperative. One is draining really well. The nurse who came out Sunday showed me how to "milk" them and I was able to clear a clot blugging one. Now there is a clot totally blocking one. It looks like it goes all the way through the drain. I've milked it over and over and can't get it to drain.

Any ideas until she gets here? I have No time when she will be here ... hope it's morning time.

Sponge bathes until they are out. Ready to shave my head now! I have to figure out a way to clean my head. I mentioned to the nurse bending over the sink. She said no, no bending over. ARGHHH. I know when I accidentally bend over just a little it hurts, so it's a good idea not to  I"ll let you know what sort of idea she comes up with.

Cheryl

Hi ladies,

The nurse came out yesterday and I learned more. She is worried about the one drain - since I see my ps today, they will clear it out in the office. She was concerened with infecting it doing it at home.

My son n law was there for the visit. Nice guy, he knows everything ... so he thought until he spoke with Jill. lol. heard a lot of 'o, i didnt know that' from him. I just smiled. Jill says with my having the immunoglobulins at the time of the chemo may make the visits up to 8 hours long ... ACK! what will be will be. have to do it. I look at my surgery side and keep telling myself they are remaking it. Gonna be a miracle. I took a pic. Thinking of taking a different one, my face would scare you more than the breast would  I wouldn't post that ... I want it for my history, to see the progress.

The nurse suggested ensure for me to eat since i have no appetite and to get my vitamins in. She aslo says to asks about meds that are taken before chemo is started to make is an easier process.

I see ps today, reglar surgeon fri, onc mon ... gonna move into the medical facility, save on gas.

hugs to all,

Been quite a while since I've been here. Too much going on. Finally made it home. Be it ever so humble, there is no place . . .

Will be four weeks this Thursday since my surgery. I still have the tubes in me. I have so much fluid building up, it's hard like a rock from my collar blade to the center of my chest, to under my arm pit it feels like a water balloon and is starting to circle around to my shoulder blade in the back. Last Thursday morning I woke up soaked, the lymph fluid was leaking from the tube holes in my body, nasty! my night shirt, sport bra, bed linens were all wet! I didn't know if I should call ems or what, so I called the nurse center that comes to my home. I was scheduled for one to come out on Thursday, so we decided to wait. She calls me in the morning, tells me to call my doc. Now, why they had me see this plastic surgeon, I don't know. His main office is 1 and 1/2 hour drive away and he is only is a local office one day a week in the afternoon and of course that was Wednesday. I talk to his nurse, she said I better call his other office and try to catch him. He says I need to get to his office in less than an hour I'm supposed to transport myself there? First off, I don't drive, I have a head injury, he knows this! and even if I did, no one could drive that fast! So he says, very rudely, I don't know what you want me to do!!!??? I tell him about the nurse coming out and he says she can unplug the drains. 

The nurse comes out, she works on them for over an hour, no luck. Says I need to go to the ER. My daughter gets off work and takes me. They decide to admit me to observe overnight and would more than likely do surgery in the a.m. to replace them b/c of so much fluid. ok, we sort of figured that but dayum, don't want surgery again but it is so uncomfortable. IN the meantime, they are calling my surgeons. The general surgeon is hands off the JP drains, says the ps is taking care of them. so they call him, and he says ... 'she's called my offce a coupld of times (which I didn't, unless he counts talking to his nurse as one and then him and the second!) and then tells the doc that he told me to come in and see him, but I wouldn't and I can just wait till I see him next week' (which is tomorrow) so when the doc is telling me this, they have this attitude like I am a drama queen and I just doing what I am being told. I so wish I could see a different plastic surgeon to finish the work. 

When I saw him last, I told him about the horrible burning pain I was having. Felt like a huge open wound, ripped open. He blamed it on the cold weather. Even my son n law chuckled at that as I was not in the weather and he knew how bad it hurt me. The night it was worst, I could get no sleep and the drainage was so dark bloody it was almost black! the next couple of days it finally started to turn to the yellow color and when it finally changed color, the burning stopped, so there was a connection there. 

I need a doctor who will listen to me. 

Yesterday I had my first chemo treatment. So anxious. my bp was 148/84 when I arrived. They started me on just the saline, then piggy backed it with benedryl, pepcid and a steroid. after that was done, he added a piggy back of the taxol. lucky me, he said most people only get 100 units, I get 300, so I have to get my hair cut this week or i won't be able to donate it. after a couple of hours, my bp was back to normal 114/70.  I got scripts for anti nausea meds and pain meds, taking the nausea now as a preventative,was up at 2:30 this morning feeling it already, and made sure I took it so I didn't get worse and the muscles are aching flue like already.

My son just came by to change the litter box. My oc doesn't want me to do anything with it, even with the face mask, because of my immune system. So I stayed in my bedroom until he was done as the powder floats in the air when it's changed, but he took the whole box outside to empty it so it wasn't too bad. He will come by a few days a week to take care of it. I am thinking of getting a littermaid so it's scooped each time she uses it and then he just empties it and changes the litter when needed. We'll see.

Tomorrow should be in the 40's, so hoping to get a walk in, hopes it helps relieve some aches. I know next week will be my down week and am preparing for it. 

Hugs to all, will be here more often, just having been feeling too well lately.

Cheryl

I saw my ps on Wednesday and I told him just what I thought, he sat there grinning while I vented. He claimed that was not what he said to the ER doc ... I said then why would they have said that? Any way ... we got things sorted out. He listened to me, for the first time since all this began. The tubes were still left in as they are still draining - 4 weeks yesterday since the surgery, and yesterday one of the stitches came out and one drain fell out, freaked me out, then I started to drain lymph fluid from the hold again, YUK He said the final exchange is planned for 3 months from now. I should get my first fill next week, then every two weeks after that. He said 100 cc's each time ... that sound about right? At the time of the surgery, he put in 300 cc's. He said he will fill to 750 for the exchange.

I had to call my dgf in Kentucky today. She is always one to get my mind off things. I love her so much, I miss her. Haven't seen her in years. She is a talented story teller and is great to keep my mind on other things.

I am really starting to feel the Taxol from Monday. And when I was at the councelor's office today, I noticed my hair is shedding ... it has to stay until next Tuesday, when I get it cut! I ran into my gp, he seems to think it should be okay.

I blow my nose and it bleeds! Is it because of sores starting already? It feels like they are starting in my mouth, too. A lady friend of mine, when she went through chemo, took barley pills and she got me some, said they helped he avoid the mouth sores. I am taking them, so I sure hope it helps.

It's so tender to move, to walk. And my oc thought it wouldn't start until next week. ooooo bouy,

My son is coming over tomorrow to help clean house and do laundry for me. I already walk with a cane so it will be a challenge going through chemo. Chin up, right?

Ok, enough, joints are achey, gonna lay backand watch tv, chat later, you are all in my thoughts,

Cheryl

Leesa, my drain fluid is now a clear yellowish color ... finally! Sometimes there is still a pink color to it. But it eventually goes back to the yellow. My ps is keeping me on antibiotics during all of this to make sure I don't get an infection. I am only doing one breast, leaving the right one alone, hopefully for always . That one never gave me any grief, the left one has had several biopsies then this one that was bad.

I pray going through the tx while the recon is at the same time is doable.

xoxoxox back at cha,

Cheryl

Hi, Just spent a beautiful day with my son. I am so glad he came over. He has struggled this past year recovering from addiction and he is succeeding! He is BACK! When using, he was taken over by a monster that I didn't know, I didn't even like. I could shed tears I am so happy to have him back, getting stronger and healthier. He even cleaned my bathroom, scrubbed the kitchen floor (the walls were getting furry from the fan, so he took care of that, too) and vacummed the carpets for me. I could go on and on 'bout him, I'm just happy to have him whole again

The expander is already in, the ps put it in when the mast was done. They filled it with some fluid then. Reading your post, Leesa, I wonder if putting in more fluid would force the rest of the stuff out of me, push it out? Makes sense to me. 

When I saw my counselor on Friday, she said how much better my chest looked (the swelling was to the middle of the chest and to the collar bone, so one could see it with a tank top on) and she said the yellowness was gone. I didn't even know my skin was yellow from so much fluid being in it until she mentioned it. My home care nurse suggested using a heating pad on it. My daughter has one of the long ones and dropped it off, been using it. What a difference it makes! Relief and keeping the stuff draining dn the swelling going down.

While waiting for my bus to take me home Friday, my gp was on his way out to his car. He came and sat with me and we chatted a bit. He asked how I was doing, etc. My sugar is up. morning readings are as high as in the 170's. He asked if they are giving me steroids with the chemo tx's. yeppers. So, I need to make an appt to see him and will have to go back on glucophage while in tx. dayum - and I was eating so well, too . I love my onc and gp docs.

My daughter took her four little ones to the dollar show. We had a nice laugh as we remembered my doing the same when my kids were all little. I asked her if she hit the penny store (I would go to the drug store to stock up my purse to avoid paying the high prices the cinema charges for treats). She said they were only getting popcorn and then they would all go out to eat afterwards. What fun for her and them today. I owe the kids a trip to the pizza parlor, the one that has all those games ... will have to plan it for two weeks from now, according to the graph from my doc, that should be one of my "good" weekends.

Love and hugs to my sisters,

Cheryl

Went for my weekly blood work at my onc's office today. Gary, my onc nurse, let me know that instead of every four weeks, my chemo will be three weeks apart. My first thought was omg, aches will be closer together, then I thought less bald time, done with it sooner. I'll be done by July, that will be my last tx instead of September.

I am aching today, all my joints, my muscles. Still having blood when I blow my nose and the throat and mouth has tender spots - Gary says it's just the sores starting, means the chemo is doing its work. I am bear this. I have pain meds I take only when and if I absolutely have to. In between, I take ibuprophen. Knowing what to expect makes it more bearable for me. Surprises I'm not good with.

I'm just relaxing today. Watching tv shows and movies I taped.

here's another piece of art work i've done. it's a drawing I call precious memories and each one is special ordered to what the child's favorites are. The photo turned out darker than the drawing actually is.It's done in berol prisma color pencils and pastels.

Well, I finally did it. My hair is cut ... short!

I look in the mirror and do not recognize the woman looking back at me anymore. Lopsided chest, puffy face (from the steriods) and now this short hair to learn how the heck to make it look like she did - tho not all that much to work with. I call it a pixie shag. Everyone said it's cute. S'pose it is, but with never ever ever having had worn it short, LOL, woo boy, will take some time to get used to it and by the time I do, it will be gone. At least, I will gradually get to the bald stage so I am hoping it won't be too much of a shock. And this way, when the hair finally does molt, it won't be so messy with hair 15 inches long falling out.

I was able to have my friend cut it at the comestic school she is attending. The last time, last week when we attempted it, she was in classes, not working on the floor so we had to wait if I wanted her to do it.

They put my hair in four pony tails to get as much of it as possible to donate, then, asked if I was ready. "No", I said. "But go ahead, I'll never be ready", I added with a shaky laugh. First one pony tail came off. Tears started falling.We took a break to get our acts together, then her teacher took over and cut off the remaining pony tails.

It's so much more than just the hair. It's making it more real. Here I am, minus one breast, had one chemo tx and it's still so surreal. Now, the hair is coming off. When will my brain allow me to take all this in???? Suzie, my friend, her mom died from cancer when she was only 18, she cried right along with me. She loves me and doesn't want me to be going through this, she is scared for me. I keep telling her I'm too stubborn, I will beat this. She's a real sweetie. My daughter was taking pictures step by step, and we had about 1/2 dozen ladies sharing in the process, sharing the laughing and tears as we did it.

Several students, not knowing what was actually going on, kept asking, Why are you cutting all that off???? We simply told them I was donating it to make wigs for children, no more. (I'm sure the word spread quickly as humans tend to do so).

I told Suzie that once the hair goes, I will come back and she can practice facials on me and include my scalp in the massage. Good laugh.

Thank God for a sense of humor.

xoxoxo

Cheryl

Tara, yes, I am keeping my thoughts up. And my sense of humor. If not for my family, friends and support friends, it would be really difficult.

I know it had to have been hard to see your stepdad go through all that he did. It's a puzzle, not eating, yet the scale goes up. They say it's the steroids. Go figure, finally not eating and not losing weight

My hair today is really falling out. I have a feeling that when I see my grandbabies they will be shocked. I so wish my daughter would just tell them what the heck is going on. Would make it easier. Kids are more adaptable than we give them credit for. And I believe if we don't tell them, when they do find out they will be sooo mad for us not telling them.

Thanks, Tara,

xoxoxo,

Cheryl