Welcome to my world

I am a wife, a mom, a daughter, a sister and a friend.
I've learned that who you have in your life matters more than what you have.
Thank you for stepping in to my world!

Wednesday, July 12, 2017

Kicking cancer's ass - day 1412

Vacation.... I'm using that term loosely tonight.  
What started out as a trip full of fun visits with friends & family, water parks, roller coasters and Jolly Cow ice cream has turned into a jumble of mishaps and medical issues.  

Before I get to the crap, let's share the good news.  My dad's lady friend is doing much better.  She came home from the hospital Monday night after getting good results on her CT scan and MRI.  She had a mini stroke (officially known as a Transient ischemic attack), but there shouldn't be any lasting negative effects.  She has to take it easy (instead of trying to be super woman.... a role she's been playing for three years) and get some help so she isn't doing 100% of everything.  My dad will not like that.... he acts like a temperamental toddler whenever anyone other than family comes over to help.  But he will just have to deal.

So after spending three days at their house on full time nursing duty spending time with my dad, cooking his meals, giving him his meds (he takes a LOT of pills!), checking his vitals, helping him up and down the stairs, getting him washed up and dressed, and dozing in the chair while he watched 12 hours of CNN, I came back to Mom's and woke up yesterday morning to this:

It started across my chest, and has since spread on my torso, down my left side and towards my back. 


I have not changed any of my bath or beauty products.  I have not been in a contaminated swimming pool or lake.  I am not wearing any new clothes.  The only thing new is my lymphedema, and I have to admit I'm a little freaked out because Dr. Google (and some of my breast cancer friends in the know) told me that cellulitis often goes hand in hand with lymphedema.  And is it an awful coincidence that the rash is mostly in the areas on my body where my lymphatic system is compromised?!?

I spent the afternoon at urgent care getting checked out.  The doctor said an infection like cellulitis doesn't usually present like this, that it looks more like a sensitivity or allergic reaction to something.  What that something is, we don't know.  The funny thing is, it doesn't itch.  It doesn't hurt.  Taking Benadryl doesn't help it, and cortisone cream doesn't either.  So what in the world is wrong with me?

Not only am I unnerved about having a mystery rash (no cancer patient wants a mystery anything when it comes to their health), but today I had to undress for a doctor unrelated to my cancer.  You would think after having two children, being examined by countless doctors over the last four years, having seven surgeries and undressing for 33 radiation treatments, it would be old hat.  It's not.  Even though I have admirable results from reconstruction, it's an illusion.  I'm scarred and have obviously reconstructed breasts.... my body is living proof of the wear and tear cancer and its treatment has on a person.  I've been seeing all of my cancer doctors for so long that I'm (sort of) comfortable with them, but someone new, not a cancer specialist, taking a look at my chest almost sent me into a panic attack.

Good thing they took my blood pressure before!

I have no idea what tomorrow will bring.  I started my first dose of prescribed steroids today, so maybe, just maybe, I will wake up and see some improvement.  If it continues to get worse, or other symptoms develop, then I have to be seen again.  I don't know what this rash is or what caused it, but I want it gone.

In the meantime, I will continue to enjoy spending time with my kids in my hometown, eating too much ice cream and finding fun things to do with my family.  We will be heading home next week, so I'm going to try and put away the worry and add the relaxation and joy back into my vacation.

Stupid cancer.

Saturday, July 8, 2017

Kicking cancer's ass - day 1408

I'm sad today.

I'm sad because it's my hubby's birthday and I am not with him.  He's a guy who deserves to be celebrated. 

I'm sad because my (for all intents and purposes) stepmom was taken by ambulance this morning.  She wasn't feeling quite right, and it's a good thing she went.  Doctor said she had a mini stroke and they are keeping her overnight.

I'm sad that life keeps getting more and more difficult for these two wonderful people.  My dad has always been the kindest, most patient, humble man.  Even though he was in his 70s, he worked full time - often overtime, he bowled, he played golf, he loved to fish.  A heart attack and stroke brought him down to walking with a walker and watching law and order reruns.  We see more and more of my old dad in him as time passes.... he's more pleasant, his memory is sharp, and his medical issues are stabilizing.  But he'll never have even close to the quality of life that he used to.

I'm sad that his lady friend is dealing with this.  I hate to use the term martyr, but she has dedicated her life the last three years to taking care of my dad.  It hasn't been easy.  He has been angry and hateful towards her, he requires constant care (his medication case scares me!), and she takes care of everything around the house from laundry to yard work to shoveling snow.  She is 70. She has been a Godsend for my dad and I don't know what he'd have done without her.  I don't know what effect this latest event will have on them.  How can she take care of him if she needs care herself?  And what can I do from 2000 miles away?  It's fortunate that this happened while I'm here to help,  but that's only temporary.

I'm sad that my BFF has stage IV cancer.  She's my partner in crime, the friend who has known me longer and better than anyone else.  The fact that she's facing the beast yet again, with an uncertain future,  scares the crap out of me and pisses me off.

I'm sad that another friend is miserable and in pain and can't find any answers.

I'm sad that the three year "anniversary" of Allyson's passing is almost upon us.  I miss her guidance, her wit, her wisdom and her caring.

I'm sad that the lymphedema in my arm is not getting any better.  Its frustrating and annoying to wrap it every night and wear compression all day and it's STILL puffy. I'm sad that cancer gave me this surprise gift 3.5 years later. 

Life is never easy.  It's a blessing, but not always a smooth journey.
And tonight I'm just sad.

Thursday, June 22, 2017

Kicking cancer's ass - day 1392

Do you know what lymphedema is?
Before cancer invaded my world, I had no clue.

Let me educate you.

Lymphedema is swelling in an arm or leg caused by a lymphatic system blockage.
The condition is caused by a blockage in the lymphatic system, part of the immune and circulatory systems. Lymphedema is most commonly caused by lymph node removal or damage due to cancer treatment.

The main symptom is swelling in an arm or leg that may be accompanied by pain or discomfort.

Since I had tons of lymph nodes removed during my initial surgery, my lymphatic system on that side is compromised.  With no lymph nodes, the lymph fluid has nowhere to go, and it can build up.

I've tried to be diligent about preventing it to the best of my ability.  I wear my compression sleeve when exercising or out in the heat, on an airplane or if I feel the tiniest bit of swelling.  I make sure to always get my blood pressure taken on my right arm, and avoid needles (shots or iv) on the left side.  In three and a half years I haven't really had any issues.

Cancer really is the gift that keeps on giving.  Aside from the fear that every ache and pain, cough or rash could be cancer, there is also the possibility of a surprise lymphedema diagnosis years later!
I saw a lymphedema specialist Monday and she taped my arm until the wrapping supplies came in.  Well...... they came in and I saw her again today.  Lucky me.

I have five, count them, FIVE layers of stocking, padding and bandages on my arm.  And I get to do this every night for the foreseeable future.  BLAH.  I'm lucky that my therapist took pity on me.  Normally a patient would wear this 23 hours a day.  Since my lymphedema isn't extreme and is mostly localized in my forearm and hand, I can get away with wrapping at night and wearing my sleeve during the day.

It's a very good thing that I've never broken a bone.  I would NOT be a good patient if I had to wear a cast.  My son had to unclasp my necklace tonight because my arm wouldn't bend far enough to reach it.  I had to stretch a rubber glove over my hand to cook dinner.  I have an ITCH in the crook of my elbow.... that I can't get to!  Oh, and I live in Texas and it's SUMMER.

We are leaving tomorrow for a road trip including a softball tournament, visits to two different friends in two different states, and ending up in New York to see my parents.  I will be traveling with my little bag of wrapping supplies and hope between me and my son we can figure out how to duplicate this crazy contraption on my arm.... every night.

I know there are much worse things I could be dealing with.  It's uncomfortable and restrictive and annoying..... but not life threatening.  I'm not sick, I'm just swollen and achy and pissed off that this happened.  

Just goes to show you you're never really "in the clear" from anything cancer-related.

I guess I get to add another color awareness ribbon to my profile.  I should go jewelry shopping.  😄

Wednesday, June 14, 2017

Kicking cancer's ass - day 1384

Cancer really is the gift that keeps on giving.

One of the complications that can arise from cancer treatment and surgeries is lymphedema.  I had over 25 lymph nodes removed during my mastectomy (that's a lot)..... basically all of the lymph nodes under my arm are gone.  That means my lymphatic system on that side is compromised, and the lymph fluid that keeps everything flushed out can build up.

I've been lucky.... in the three and a half years since that surgery, I've only had some minor incidents of swelling in my left arm.

My luck ran out.

Apparently working long hours in 100 degree heat for three days straight at the softball fields was too much for my poor compromised left arm to handle.  Even though I wore my sleeve, my forearm, wrist and hand have been swollen worse than ever.  I had to take my wedding rings off because they were cutting off the circulation on my finger.  Being unable to wear my rings makes me sad (just ask Hubby.... I almost cried when I had to take them off for surgery).

I now have elephant man hand.

Maybe I'm being a little dramatic, because looking at that picture, it's obvious but not horrible, right?  However, once you have small signs of lymphedema, you can easily fall down the slippery slope into more extreme cases.

"Hand lymphedema is more difficult to control than arm lymphedema. The hand’s irregular shape, its critical role in daily activities and the difficulty inherent in precisely fitting a gauntlet/glove all contribute to this problem. It is vital that early signs of hand lymphedema be taken seriously and that appropriate modifications are made to a patient’s lymphedema maintenance program."

I have an appointment on Monday with a lymphedema specialist and I hope he/she can help.  I was treated by a wonderful occupational therapist right after my surgeries, but she's in Dallas.  Since therapy often involves multiple sessions, I really needed someone local.  Fingers crossed.