Cellulitis Does NOT Mean You're Fat

After a couple of therapy treatments and faithfully wrapping my arm, I noticed a spot on the inside of my forearm, just above my wrist, that was hard under the skin.  When I saw my therapist on Tuesday, she said that it could possibly be cellulitis due to the hardness and the warmth, and told me that she didn't want to do the massage because it could push the infection out into my body.  She sent me upstairs to see my oncologist.

It was 7:00 am, so the nurse was the only one there.  She looked at it, told me she'd contact my doctor and then call me.  I went to work and waited until about 11:00 before calling to check in.  "Oh yeah" she said.  *sigh*  She said that the doctor wanted to have me start a double strength bactrim right away.  She told me she'd call it in.

After work, I stopped at WalMart to get it and they said nothing had been called in.  I drove home mad (doctor's office was closed by now.)  After I got home, I called the on-call line and immediately got a call back.  My doctor was on-call!  Yay!  She didn't sound happy that the nurse had dropped the ball, and told me she would call it in right then.  Now it involved a 30 mile round trip, but I got my medication.

Wednesday morning, the area was nearly twice the size.  That afternoon, I called back in.  The nurse called the doctor and she said to give the bactrim a couple of days to work, and to lay off the LE massage until next week.  Fine.

This morning, I decided to keep my appointment with the therapist, just so someone would look at it.  I got there, she unwrapped me and the area was larger still, and she was concerned about how warm my arm was.  She thought I should go upstairs again.  Same nurse was there.  I showed it to her and she said that she agreed it was worse and that she would talk to the doctor when she got there.  I went to work.

15 minutes into my day, the phone rang.  The nurse told me to go to the ER for IV antibiotics.  She told me to be prepared for the chance that they might admit me.  I hurried to tie up some loose ends at work and headed back to where I'd just left.  Kevin met me there and we waited.  And waited.  Finally they took me back, drew some blood, and hung a bag of fluids and a bag of antibiotic.  It was four hours later before they had a room available, but they did admit me.

I don't know how long I'll be here.  The were pretty vague.  I assume they'll want to see how the arm reacts to the antibiotics.  I am to get them every 12 hours.  I don't feel horrible, the nurses are sweet, and the food is good.  Things could always be worse.  I also get some cute visitors.

The Beginning of LE Therapy

I had my first therapy session with the lymphedema specialist this morning at 7.  She explained a lot of things, and then did the massage.  She massages areas with all lymph nodes that she wants to get moving, and then my arm, trying to push the lymphatic fluids toward those working nodes.

After the 30 minutes of that (it will be 45 minutes during future appointments,) she started the process of wrapping my arm and showing me how to do it.  I have to do it alone, because Kevin is long gone to work before I wake up in the mornings.  Because of that, I unwrapped and re-wrapped it tonight, to make sure I could.  I made Monica take pictures for me so I could remember everything.  Wanna see?

First, I put on this sleeve.  It's a lot like what they put on you before wrapping you in an old-school cast: 

Then, I wrap this foam around me.  It's not tight, but it is beneficial in some way.  I don't remember how because that was 13 hours ago.  LOL

After that, I wrap my fingers in this thin gauze wrap.  She told me that it has to cross the back of my hand between each finger wrapping, and if it's done correctly, there will be nothing crossing on my palm.  I got it right!

After that, I take the first of three bandages and wrap my hand and wrist.  They look like ACE bandages, but they have different properties and push fluid out while keeping more fluid from building up.  I have to use tape to hold them in place, because the little clips that you use with an ACE could nick the skin, and that would be a problem.  For the rest of my life, I have to make sure that I don't get any injuries to that arm, because it will be prone to infection.

Finally, I use the other two (wider) bandages to go up my arm.  They have to be uncomfortably tight.  It doesn't hurt, but it's annoying as heck.  It's going to be 15 minutes added to my mornings, and it's going to be uncomfortable, and it's hard to type.  It's also not cancer.  I'm trying to get my attitude in check and stop whining.  

I can do this.  I did chemo, which made me crawl into bed at the end of each day (sometimes crying) and couldn't move until I left for work the next day.  I did radiation, which made my skin so raw that I had to wear special gel pads under my bra.  I had 3 surgeries in 3 months.  This is a wrapped arm.  Just a wrapped arm.  I've got this.

Lymphedema

Yup.  I have it.  I saw the LE therapist this afternoon, and start with her tomorrow morning at 7:00 am.  I'll see her on Tuesday and Thursday mornings for up to four weeks, depending upon how my body responds.  I found out that I am NOT guaranteed to wear a compression sleeve for life, but I'm also not guaranteed NOT to wear one.  That made me feel better, because I assumed that I would have to.

Each session will involve her doing a very gentle massage that moves the lymph fluid out of my arm and toward the remaining lymph nodes.  Some toward the opposite side and some down, toward my stomach/groin nodes.  It won't hurt and some people fall asleep.  Cool.  Then, I get wrapped.

There is a thin layer of foam that will be wrapped around my arm, and then a wrap that looks like an ACE, but works completely differently.  Instead of being immobilized, I am to use my arm as normal.  The wrap will help push the fluid out of my arm, and prevent fluid from building back up.  She warned me that it is hot, uncomfortable, and annoying.  She also said to remember that it is temporary.

If the best case scenario comes to pass, my body will respond favorably and the swelling will go down.  Then, I will get a compression sleeve.  How much I wear it, and how long I wear it, will be determined later.  I truly do feel better than I did before this appointment.

Oh, and I told Kevin that there was no need for him to go to this appointment.  I didn't need him there.  He met me there anyway, and it made a world of difference.  I was able to tell all the details of the past year and talk in depth about things without tearing up a single time.  Yup.  I need him there.  I have to stop arguing with him about that.

Labor Day Weekend

Labor day weekend was fun for some of us, and meant two full days of Kevin lying under a car in the heat.  Monica had brake issues and nothing went as planned when it came to fixing it.  When you don't live near an auto parts store, you realize how seldom you get everything you need in one trip.  We drove to Buckner four times.  *sigh*

Today, I took Natalie, Monica, and Monica's friend Cori to the mall.  Cori fits in so well with our clan.  We laughed and listened to music too loudly and made inappropriate jokes.  I was able to finally get Natalie some things for her birthday.  It seems she always has to wait.  August is often a difficult month for us for various reasons.  Broken down cars, for instance.

My arm swelled last Thursday and Friday.  It swelled alarmingly fast and wouldn't go down.  I called my oncologist who told me to call my plastic surgeon who told me to call my breast surgeon.  I made call after call as the hours ticked away toward a long weekend.  I finally got a plan from a nurse at 3:00 on Friday.  Go home, stay in the air, and go see Dr. Shook on Tuesday afternoon.  If it swelled more, I was to go to the ER.

I measured often and it has stayed the same all weekend.  It is one inch larger than my right arm in all three places that I measure.  It could be from being in a sling for so long (which is what we hope,) it could be cellulitis (dangerous but controllable by antibiotics,) or it could be lymphedema (Lordy I hope it's not lymphedema.)  I certainly am tired of new complications.

Tomorrow, we launch into super busy days of busy season.  It's been increasingly busy for the past couple of weeks, so the time is here.   No more long weekends or vacations for a while.  Unless you call medical leave a vacation, because I should be having surgery sometime in mid-October.  Somehow, I don't think that counts.  :)

Moving Forward with my Best Friend

Because of my inability to go to a doctor's appointment lately without crying, Kevin has decided to go to every appointment with me from now on.  I thought that was sweet, but silly.  What's the need?  He went to the PS with me yesterday and it was so much easier on me.  It's amazing what a difference it made.  He was right.

In six weeks, we'll go talk to Dr. Dillow again and get the ball rolling for the TRAM flap surgery.  It should happen in mid-late October.  Having a target time helps a lot, too.  I was floundering around wondering what would happen and when, and I feel better knowing that it's coming soon.  Soon?  Well, after the 18 months I've just gotten through, mid October is soon.

I've gotten so many cards, letters, texts, messages, comments, and calls of support.  I am astounded.  I have people thinking of me and praying for me all across the country.  How could anything else go wrong with that kind of support?  :)  It won't.  I'm 2 months away from having Dr. Dillow make my body whole again.  That will be an amazing day.

I'm climbing out of my funk, and I'm sorry for being Debby Downer.  I had NO idea, when I got married, how much I'd need Kevin, and how much he'd step up and take care of me.  He has been amazing.  He's my rock.  He's my best friend.  I love him.

A Very Difficult Easy Appointment

I know it's been a while (again,) but I refuse to do whiny post after whiny post.  I know that it's my "right" or "normal" to feel like this sometimes, but nobody wants to read that crap all the time, so I'm not posting often until I get out of this funk, but I'll try to update from time to time.

I had an appointment with my medical oncologist today.  (I have so many doctors these days, and will put a legend at the bottom of this to help you understand if you've never dealt with cancer care.)  It was a simple appointment where she checked on me and made sure I had no side effects from my medication and that my vitals were good and then to send me on my way to not see her for six months.

During this simple visit, she asked how everything was going.  I had to tell about it all.  About my reconstructive surgery and how it failed.  About how he tried again and it failed again. About how we're back at square one and I can't even consider another procedure for a couple of months, minimum.  I had to tell her all of this, and it made this simple appointment more difficult that I'd ever imagined.  I returned to work emotionally drained.

I hated having to tell these details.  I hated it more than you can even believe.  I cried all the way back to work.  Emotionally, I'm handling this worse than I handled the weeks after diagnosis.  From the time I was diagnosed with breast cancer, everything has been onward and upward.  "We're doing this to get cancer out of your body."  "We're doing this to keep cancer from spreading to other parts of your body."  "We're doing this to keep cancer from returning to your body."

Now that all of this is handled, it's time for the cosmetic part.  Should be no biggie.  But it keeps failing and now I have to wait and I just want to put it all behind me and MOVE ON.  Before you tell me that it could be worse, I know that.  I have a few friends with stage 4 breast cancer.  They are facing a long road of continuing treatment.  This is just aesthetics.  I'll get by, and I'll try not to whine too much about it.

I have an amazing family taking care of me, and I'm not wearing that damn sling anymore.  Those are two things to be very thankful for.  And believe me, I'm thankful for them.

Edited to add the legend and it's too late to claim chemo brain:

Breast Surgeon (BS) - Performs mastectomy or lumpectomy or whatever is deemed necessary to remove tumors from the breast.

Medical Oncologist (MO) - Administers medications to fight cancer.  Responsible for chemotherapy and any medication after the fact.

Radiology Oncologist (RO) - Administers radiation and follows up with skin issues afterward.

Plastic Surgeon (PS) - Does reconstruction after lumpectomy or mastectomy  Also does work on the unaffected side if only one breast is removed.

Physical Therapist (PT) - Tries to get our body to work like it did before all of the above doctors do their thing.

Primary Care Physician (PCP) - The guy who gets tons of reports sent over and wonders what the HECK has happened to you when you actually only see him for the occasional cough.  Poor fella.

I'd Give My Left Arm to Get Rid of That Sling

The sling is gone.  I was in it for one day short of 10 weeks.  My arm feels like a noodle hanging off the side of my body.  It's kind of funny.  They made it clear that I am NOT to start therapy yet, and should still restrict lifting and major movement, but still, the sling is gone and I can sleep in my bed!  I slept so well last night, it was unbelievable.  If you ever want to appreciate your bed, sleep in a recliner for 10 weeks.

They also removed the drain.  That is good, but I'm finding that I start hurting around 1:00 or so in the afternoon.  I think it's because I am a desk jockey, so I've been taking a pain pill and then walking around the customer service area and it helps.  I don't have great posture, so I'm thinking that is causing it.  They did yank a drain out of my side yesterday.  I'm hoping that it's a short-lived problem.

I also finally got a medic alert bracelet.  I'd been avoiding it because they were either ugly, expensive, or just not what I wanted.  I don't wear jewelry, so it was weird to try to pick one out.  Because of the mastectomy, I cannot have needle sticks or blood pressure cuffs on my left arm, so it's important that I wear it.  It's Italian charms, so I can slowly add charms to replace the blank silver ones.

I'm currently bound in an ACE bandage for 2 weeks, after which I'll go back to see the plastic surgeon.  We won't plan for the next surgery for a couple of months, most likely.  I have to just heal and wait.  *sigh*  A year ago, I really imagined that I'd be done by now.  It was good that I had something to look forward to, but it sure is a disappointment to reach the light at the end of the tunnel and find a gorilla with a flashlight, waiting to knock you down.

I'll be OK.  The pity party has ended and I'm just doing my thing.  I go to work, I come home, and I sleep in my own damn bed.  And that bed feels pretty good, if I do say so myself.