We Have a Plan...and I AM Getting on With My Life

Three weeks ago I had surgery.  Each day is better.  I have my down days, but it has been almost a week since I was feeling not well physically and that translates to emotionally.  I had to take a half of one of my "happy" pills, as R calls them so that I could get the sleep I need.

Since I last posted, I have had a followup w/Dr. Rasmussen, my surgeon, and got the thumbs up.  Don't need to see him again until after chemo.

I also had a followup with Dr. Ferguson, the plastic surgeon, well actually his PA Travis, who removed the last drain Friday.  Yeah.  Feels so much better...MAJOR BETTER, but Travis only removed it if I stayed absolutely still for a few days.  Um, I only work at a computer, so it's not like I'm outside chopping wood.  Shaking his head, no working, so had to beg off and truly have tried to be still UNTIL NOW, Monday night.  I was borderline on fluid output to get it pulled and being active increases fluid, so with the drain removed there is the chance of seroma development, hence the "chill out" order. 

I also got another fill job.

Oh, and we spent three hours at the oncologist's office...check in and wait, see patient advocate and wait, see nurse and wait, see PA and get a physical and go over the packet that I filled out and brought with me and wait, see doctor and get scheduled.  Done...three hours. 

So, I start my chemo on Friday, March 30, six sessions three weeks separated, plus I get a chemo drug called Herceptin which needs 11 sessions beyond the initial six, so I will have an infusion every three weeks for a year.  That's 17 IV placements and since my right arm cannot be used from here on out for needles, then doc wants a port-a-cath placed, which is venous access in my upper chest just under the clavicle.  Sounds yucky to me, but will ease the burden on the small veins in my arm.  I arrive 6:30 a.m., yup gotta get up early, at the hospital and am scheduled for four hours to get this procedure done under conscious sedation by radiology, then go over for my first chemo infusion which I have been told being first will take a little longer, 3-1/2 hours, so I'll be at the hospital all day. 

tomorrow night I have a chemo class, required by doctor, where I will get all my questions answered, taught by the oncology staff.

Doc also requires that I get a baseline echo prior to first chemo, which I will have done this Friday. 

Lots of appointments.

I'm doing well, went to all three hours of church Sunday and did very well, didn't cry.  It was a lift for me, lots of encouragement.  I needed that church boost yesterday and am looking forward to all three hours of church this Sunday. 

My RS president just sent me an email (her sister-in-law just had her 2nd chemo session) and mentioned to me that her sister-in-law went to see her grandbaby get blessed and then ended up catching someone's bug and had a 10-day hospital stay, so when she wants to go to her church there is a buffer zone discreetly placed in front and behind her bench, meaning couples who are well with no children.  She's so sweet and has offered to arrange that for me.  Something to think about, but shouldn't be a problem, seeing as we sit 2nd bench (isn't it funny how we all have "our" bench) left front, and usually the bench in front is empty and frequently the bench behind is a family w/o little children, but definitely something to think about, as I do want to go to sacrament meeting as able. 

I know that I will be receiving a Neulasta shot after each chemo session which helps to build up the white cells that are destroyed.  The shot itself costs $6000, but oncology office is preapproved to administer because insurance has found that it's better to pay $6000 rather than allow claimant to get sick due to crashed immune system and end up in hospital. 

Got a call from a family member today, actually call not really for me, but I was the one who was home and answered phone.  I was chipper and positive, but kind of bothered when I heard "well, I hope that this doesn't take you and that you can get on with your life."  I thanked caller, but was thinking "I am getting on w/my life.  This is my life.  I am still here and trying to have normality as possible.  My life continues and has not stopped." 

Actually, I shouldn't sound annoyed because I am truly blessed.  So many good people checking up on me, buoying me up.  My life is good, just a few bumps in the road right now, but overall good.

Lazy Sunday Afternoon

Sundays used to be busy, but not any more.  I think I would rather have the busy-ness.

Just woke up from a nap and I'm so tired that I think I could go back to sleep sitting here at the computer. 

Friday I got my second fill job (where the tissue expander under my flaps gets an infusion of saline).  My first was during surgery.  I didn't know that I was going to have that done, so that was kind of freaky.  Sure am glad that R was there to hold my hand.  Remember...I'm not a fan of needles.  Once the port of the tissue expander was detected, which is done via a magnet, then the saline was injected.  I don't know how many fill jobs it's going to take for me to have symmetry with my good side, but I'll just have to buck up.  I think that I'm scheduled for another fill job this Friday??  I do have an appointment this Friday for removal of the other drain, but then the PA said that we might be returning Wednesday for removal depending on the fluid drainage, so not totally clear?

I did get one of my drains removed ("deep breath in, deep breath out, deep breath in, deep breath out"--and the drain was removed, got a new dressing which kept me out of the shower for a couple days, so I have to say my highlight this weekend was this morning when I was able to get in the shower...ahhhhhhh, heaven.  I only sport one tube and one drain, but still had to be selective in my choice of Sunday clothing so that I could adequately cover my medical tubing and drain so as to be able to go to church...went to a farewell at another ward, one of V's best friends w/whom he had a big role in getting this guy ready and out into the field. 

What is bugging me is that I'm having an area of underarm pain.  It has always been there, but is more noticeable (CONSTANT) now that I don't take any pain meds or even NSAIDs.  It's what I believe is medically called hyperesthesia, or a hypersensitivity as one of the PAs said Friday.  I just got out my 3-inch patient education manual and read about symptoms that may occur, and for me the symptom of change of sensation has occurred due to having my lymph glands removed.  "This happens because the nerves running through the armpit often have to be disturbed to reach the lymph nodes that lie behind them.  This causes trauma to the nerve, which can lead to a variety of symptoms such as...." and my symptom is sensitivity to touch or pressure with burning sensations.  It feels kind of like a bad sunburn, although the skin looks just fine.  The manual says that the symptoms are "usually temporary and improve about three months after surgery."  Ee-gads, three months of this!!  Okay, I'm having a bit of a pity party, I know. 

Overall, I'm making progress.

I was told Friday that I'm not babying my arm sufficiently.  What?  R and I both remember being told not to lift above the shoulder level and not to carry anything heavier than a newborn (not that I've been carrying any newborns for any time lately).  However, as my surgical site has healed I've had plenty of lateral movement and so cleaned off the counters, tables, drawers, even had J set up the ironing board and get out the basket for me, as ironing shirts didn't seem out of the equation (did the ironing in spurts throughout the day), but evidently that's all a no-no, so I've totally given in to being waited on, which has its ups and downs.  Again, my guys have been really good to me. 

Okay, funny part here...R has twice had to place some hot rollers in my hair in the last couple days so that I am presentable to leave my house.  Can you just picture me sitting on a chair in the bathroom and him placing rollers?  I went the hot roller route as that is much easier than trying to teach him how to use the curling iron.  He's a good sport, and I just have to be patient and grateful for the end result...but wish I could do it myself.  By the time I get the go-ahead to raise my arm, I'll probably be bald.

Buttoned, Baggy Shirts

For the past week I've been mostly in my PJs (like I'm going anywhere, right?), but occasionally I've been getting dressed which means a buttoned shirt, as I can't lift my arm above the level of my shoulder (to protect the healing process), and loose shirt, to cover my two hand grenade-sized plastic drains that attach to plastic tubing that exit from the underarm, slightly toward my back area.  Once the fluid reaches minimal output in a 24-hour period (can't remember if it's 1 cc or 10 cc), then the drain can be removed, which neither one has reached yet.  Maybe one will be ready for removal at this Friday's followup?

Each day I get stronger.  I have complete lateral movement of my arm, hence no problem sitting at the computer to type. 

I've been stir crazy, so it has been nice to have some visits.  Debbie L. and Kathleen L. have been by to bring me lunch, plus RS dropped by dinner tonight (it's the monthly RS meeting and there was dinner, so they brought over dinner, so nice).  The notes that arrive in the mail have been big lifts. 

I was told that I would want to cocoon and isolate during this healing period, physical and emotional, but I'm finding that I'm actually doing quite well with the sociality of visits.

I've been learning to rest, a hard lesson learned.  Last Friday I didn't take a nap, was up all day, cleaned out the sock drawer, R took me for a drive, which was good, but I had a back ache the whole time, even whole body achy that night, so I must have overdone.  Saturday I didn't feel so well, took two long naps, was emotional and blue, but by Sunday I was on the upswing again. 

Okay, this journey has been more emotional than I had anticipated.  The first time I got to take a shower (three days post surgery), I could not look at the works of medical hands--was glad to have my glasses off.  I cried, but R buoyed me up.  He had to climb in the shower to help.  I have to pin the drains to a lanyard around my neck, but we have the process down.  The second time I took a shower, I took a good look at the incision sites.  Just envision a deflated balloon with a suture line across the middle...that would be my breast, but at the same time am grateful that it is clean, no infection, and it's my road back to health.  I even could look at the tubes that exit my body...okay looked, but still had a little crying jag. 

Yesterday night I progressed to the point where I could take the shower by myself. 

Dr. Rasmussen has called since my previous post to say that the pathology was back and my case was presented at last week's tumor board.  Dr. R. told me that six tumors were removed from the breast (so again reassured me that there was no other alternative but a complete mastectomy), the largest 5 cm and the rest between 0.5 cm and 1.6 cm.  However, the good news is that only the sentinel node tested postive for cancer, so that's actually good news.  Dr. R. gave me the names of the oncologist that his office refers to, and I made my appointment, a week from this Friday.  Dr. R. also told me that the recommendation of the tumor board is full treatment, meaning chemo, radiation and hormonal. 

I'm yawning, so perhaps it's time for me to get ready for bed.  Last night was the first time that I didn't have a pain pill on board for the night (though weaned myself off pain pills during the day many days ago) or even the Xanax prescribed pre surgery, and so did not sleep as well.  I woke up with hot flashes several times, one so severe that I had to sit in front of the fan for a while, even walked into the kitchen and open the freezer door, plus I have a little insomnia going on, so I read until exhaustion takes me back to sleep, but now I've finished that book.