Clergygirl Itches, Fights Temporary Insanity

Thanks all who were praying today. I’m doing well. Digger indentation is gone and overall I can see a positive difference. The only hang-up I’ve had is itching. Once again I had an allergic reaction to the anesthesia and as I came out of my groggy slumber it became uncontrollable. The nurse and doctor tried to do as much as they could and were very patient and good to me. I don’t know if you’ve ever experienced itching to that extent….all over your body…but let me tell you….the word insanity comes to mind. I become a very different person….a crazed person. I told Jeremy….when it is at it’s worst….I feel like yelling like a crazy lady and grabbing my nurse and begging her to help me. It really is not fun. It has now happened to me three times. After my mastectomies, then reconstruction, and now today. This time it came on quicker and was probably the worst I’ve experienced. I wanted to rip the bandages off and itch everywhere like crazy. I would have invited anyone in the area to itch with me…..lol. What a funny picture that would be.  Everyone picking a spot and itching. But it would be downright gross. But Jeremy will scratch for me. What a good hubby he is! So the Benadryl only helped slightly so they got some hydrocortisone cream and we caked it all over. Finally, some relief. They decided then that I should stay the night. Much of the itching is gone thankfully. I’m on some sort of prescription and we rotate the prescription meds with the Benadryl every few hours and it keeps the itching under control, so now I can rest some.

On a good note. Before I went in to surgery Dr. D used his marker to plan out his strategy. On the sides where it pooches a bit under my armpit he suggested lipo’ing the area and asked if it was ok. Is it ok?  Is it ok?  He could do lipo on me anytime, anywhere! I would never not say yes to lipo anywhere but my breasts….lol! So he lipo’d my back fat and the sides of my hips a bit and after a tough cancer journey he gives me perks like this. He is genuinely a very kind man and a great surgeon. I am so grateful to have a surgeon who I really trust and who is helping me feel better about my disfigured body.

And if I sound super chatty and happy in this post, I am….lol.  Thanks to a little magic pill called norco I am feel’in real good….lol!  I’m just hoping I don’t come back and read this and realize how loopy I was.  Because then I get embarrassed by my misspelled words and sentences that don’t make sense….lol!  I have a good excuse:)

The world of lymphedema (by Sarah)

I have been welcomed to the world of  lymphedema. After I was diagnosed and had surgery my surgeon briefly talked to me about it but said that none of her patients got lymphedema. I thought I was safe, thinking I would not have a problem with it. I was wrong, I have been suffering from it for some months now and did not realize it. I am suffering from mostly truncal lymphedema. Like Stella my symptoms are mostly pain with a bit of swelling. I have made lots of trips to my oncologist complaining about my pain and was worried that my cancer had come back. Little did I know that lymphedema is very painful. Something I was not told before. I have been to a therapist 4 times now and it seems to be working for me. I am educating my self on how to move my lymphatic fluid that builds up under my arm and in my back. I have been fitted for a sleeve and a vest as well. I will be interested to see how the vest works, I will be wearing it at night and am hoping that I will sleep more comfortably.

The signs of lymphedema may include:

• swelling in the breast, chest, shoulder, arm, or hand
• area feels full or heavy
• skin changes texture, feels tight or hard, or looks red
• new aching or discomfort in the area
• less movement or flexibility in nearby joints, such as your shoulder, hand, or wrist
• trouble fitting your arm into jacket or shirt sleeves
• bra doesn’t fit the same
• ring, watch, and/or bracelet feels tight but you have not gained weight

Early on, the lymphedema may be relieved by raising the affected limb and the skin usually stays soft. But over time, the swollen area may become hot and red and the skin hard and stiff.

Here is a link with more information that is very helpful. My advise is to educate yourself, know the signs of  lymphedema and know your body. Talk to your doctor and be persistent. My doctor told me I did not have a problem but the lymphedema doctor saw my problem right away.

Message, the right kind of message is the key, I was not educated and was not doing my message correctly. If you do have signs of lymphedema get to a good certified lymphedema therapist right away. Your doctor should have a list of good therapists in your area. I feel more relaxed now and know why I have this pain. The pain isn’t fun but I am comforted by the fact that I know what is causing it and am getting the tools to deal with it.

Truncal Lymphedema

Do any of you ladies suffer from truncal lymphedema?  It frequently occurs after reconstruction or lung surgery.  Symptoms can range from very minor swelling or discomfort to severe pain and swelling that may encompass up to the entire chest, back and shoulders. 

I have a bit of truncal lymphedema in my right underarm.  Thankfully, it is very mild.  For about a year after my reconstruction I felt like my underarm was bulgy and very uncommfortable.  When I took off my bra at the end of the day I felt like I was still wearing it all evening.  Yet when my oncologist compared my underarms she said she couldn’t see any swelling.  Huh.  That just means that even the most minute edema is painful and uncomfortable.

Unfortunately, my mom has not been so lucky.  She is suffering from fairly severe truncal lymphedema.  At first it was just the underarms like mine.  Over the last year or more, however, it has spread across her unreconstructed chest wall, around her ribcage and is beginning to spread across her back.  According to her, it’s so bad as to look like her old breasts have relocated to her sides under her arms.  Great.  This is what truncal lymphedema looks like.

She routinely does self massage and physical therapy with a lymphedema masseuse.  She has to or she looks like she never had her mastectomy.  The trouble she’s recently been having is that the lymph build up across her chest has stretched her skin much like expanders do prior to receiving breast implants.  Again, yeah!

My mom recently (this morning) consulted with a plastic surgeon about removing all the extra skin.  Her appointment was something less than satisfactory. 

She was told that while he could remove the skin the swelling may just return and stretch it out all over again.  Ok.  We both kind of figured that.  But the surgeon also told her that it was not lymphedema.  What is it, then?  Excess fat. 

Yes.  You heard me right.  Excess. Fat.

Forget that two oncologists, a general practitioner and a lymphedema physical therapist all agree it is truncal lymphedema.  Disregard obvious and predictable positive response to manual lymph drainage.  Discount completely the possibility that a patient who has undergone chemotherapy, surgery and radiation just might know her body a bit more than a plastic surgeon who is looking at it for the very first time; call it instead, excess fat. 

Needless to say, my mother will not be seeing that plastic surgeon again. 

I found that once I stopped wearing a bra entirely my underarm issues went away.  But it took a while.  I had actually forgotten I had had the problem until a few weeks ago when I attended an all-day photography lecture.  I wore a tight elastic cami under a peasant blouse.  It had a built in shelf bra.  By noon I found myself pulling uncomfortably on the underarm of my peasant blouse.  At the mid-afternoon break my right fingers were puffy and the cami was cutting into my underarm like a tourniquet.  I rushed to my car at the conclusion of the lecture and squirmed out of the cami immediately.  It took nearly 4 days before my underarm felt normal again. 

I had to shield my eyes from the blinding glare of the lightbulb over my head. 

I know that the most common treatment of lympedema is compression.  Compression sleeves, compression camisoles, etc.  I can’t help but wonder, though, if wearing nothing in conjunction with the lymphatic massage might be a better solution for my mother. 

I don’t mean to put this out there as a tried-and-true solution by any means.  I am hoping to access the great knowledge of the internet.  Please let me know what your experience has been.  What has worked for you.  Do you do massage?  How does it work for you? 

For those looking into Manual Lymphatic Drainage Massage there is a video on YouTube. 

My cross to bear (by Stella)

Dr. Wendy Harpham of On Healthy Survivorship poses a great question to cancer survivors last week.  She wants to know which stage of cancer was the most challenging?  Diagnosis?  Beginning treatment?  Ending treatment?  Some time in the middle? 

For Dr. Harpham it was those limbo days between initial diagnosis and treatment beginning.  I know what she means.  For me, it seemed an exceptionally long time.  I was diagnosed on December 22, 2005 – the Thursday just before Christmas.  Most every healthcare professional was heading out of town.  Certainly no one wanted to take on a new patient over the holidays.  Consequently, I didn’t meet with my new Oncologist until January 3, 2006 and began chemo the next day. 

Those 13 days were beyond horrible.  There was a cancer inside me thriving at my expense.  It seemed to grow bigger every day!  I could feel it.  I swear, I could hear it whisper dark promises of an early death and motherless children.

What bittersweet Holidays that year.  Daddy-O and I had agreed not to tell anyone about my diagnosis until after New Year’s.  Why ruin everyone’s Christmas?  The end result, however, was a great burden on our hearts that we couldn’t share with our friends and family.  Each seasonal tradition was painful beyond belief.  Who would search with loving dedication for just the right gift from Santa?  Who would listen to their babbling, aimless words and sift from them their heart’s desire?  Would I ever read The Night Before Christmas to my little boys again?  Would I ever see their eyes alight with the wonder that is Christmas morning ever again? 

The day I began chemotherapy was the. best. day. of the next 10 months.  No more being hostage to fate!  No more victim!  At last I was fighting back! 

Still, I don’t think that was the most trying time for me…  My toughest day was the day I truly started losing my hair and made the decision to shave the rest off.  Until that day I had not really felt ill despite my first round of chemo.  Until that day cancer had seemed vague and ephemeral; death had been theoretical. 

Roughly two weeks after my first chemotherapy treatment my hair began coming loose from my scalp.  Initially, it was funny.  It’s really the strangest thing.  It doesn’t fall out all over the place.  I didn’t wake up with a scalp on my pillow.  All the hairs still look firmly attached but they’re not.  It’s like they’re all held on with Post-It glue.  One little tug and it comes away in your fingers without so much as a “pip” to indicate the separation.  It’s kind of amusing in a hey-look-at-my-cool-new-party-trick sort of way.  A couple of mornings later and it’s not so funny anymore.  I won’t bore you with the details again. 

Losing my hair took me out of the closet.  I became a walking Poster Girl for chemotherapy.  Every time I looked in the mirror I was confronted with my mortality.  The baldness literally stripped me bare.  I couldn’t walk through the store without drawing stares.  My son would beg me to take off my hat to show his friends my bald head. 

With my hair went my vanity, my anonimity and my delusion that I would live forever.  Looking back I feel very, very blessed.

 Cross-posted to I Can’t Complain Any More Than Usual.

Frankenlefty has left the building.

crossposted from ThrowsLikeAGirl

Or will have by 8 am tomorrow.  Same problem as last time.  Infected skin, no bacterial growth in cultures.  They took about 200 ml of fluid out of frankenlefty this morning.  Brought it down in size from a freakish stripper boob to a normal stripper boob.  Can’t tell you how much better that feels.  It had actually started to migrate to the right so I truly would have been uniboobed.  PS says I still have options.  I have to wait another 3 to 6 months to stabilize and we can work up a new plan.  Maybe one that doesn’t involve implants, depending on how frankenlefty looks without the expander.  That’s fine by me.

I have to admit there is just a tiny part of me that is glad to see it gone.  It’s been ridiculous, as I’ve mentioned before. I have to actually haul the thing up and out the window to reach things in a drive thru.  Definitely not going to miss that.  I will also be able to sleep on my left (once the drains are out.  Again.) without feeling uncomfortable.

Oh and I’ll have drains for Halloween.  I figure I can go as a Breast Cancer Awareness Borg.

I am 1 of 8.

Get your mammograms.

Resistance is futile.