Kicking cancer's ass - day 1764

Today I spent some time in the Nuclear Medicine department at UT Southwestern.  My day started out with all sorts of fun by having to wake up at 3:15am.  That is an awful time to be awake for anything, let alone a three hour drive.  J and I hit the road at 4am and even with Dallas morning traffic we arrived 30 minutes early.   

I knew I was having some type of nuclear scan, and if it was like the one I'd had previously, they would put in an IV and give me an injection of nuclear stuff, and two hours later I would have a scan.

WRONG.

The tech that took me back to the imaging room asked if I had had lymphoscintigraphy before.  Nope.
Then she asked if I knew what it was.  Nope again.
Another tech entered the room and they proceeded to explain what was going to happen.

Let the fun begin.

I sat down on the little bed and they put a table cart in front of me.  I was instructed to put my hands flat on the table and stay as still as possible.  Like this:

(See the lovely difference lymphedema has made?  My normal right hand and the elephant hand on the left.... ugh)

Anyway.... I digress.
The two nice female techs explained that they were going to give me injections of the radioactive dye that would show the blood flow in my hands and arms for the scan. 
Oh, and those injections would be done at the same time... BETWEEN MY FINGERS!!!!!  😱😱

Let me tell you, that is as unpleasant as it sounds.  The prick of the needles wasn't that bad because those needles are tiny.... but that radioactive shit feels like FIRE going in.  (Pardon my language)

I kept my cool and didn't flinch or make a sound.  The techs were impressed. 
"Wow you are strong!  Not even a wince."

I've been through much worse.... but still.... Jesus, that hurt.

I then spent the next two hours with this machine:

I don't know if the dye wasn't behaving or my circulation was too slow (hello - it was freezing in there!), but they kept having to redo images (each one took 5 minutes), wait 5-10 minutes in between, and even had me get up and walk around, stretching my arms before they tried again. 

Finally they got all that was needed, and I waited another twenty minutes for the radiologist to confirm that before they let me go.  Getting up at 3:30am to spend six hours in the car and three hours in a waiting room earned my teenager lunch at Cheesecake Factory (and we even brought dessert for Hubby) before heading home.

Dr C will review my test results and then a decision will be made on what, if any, surgery I'll be able to have for my lymphedema.  I'm not really sure what he's looking for or what a "good" result is, but whatever it is, I'm praying for it.

I was asleep on the couch by 3pm.

Kicking cancer's ass - day 1762

Almost exactly one year ago I posted about the latest gift I'd received from having cancer:  lymphedema.

Kicking cancer's ass - Day 1392

That was on June 22, 2017.  Today, June 24, 2018, a year later I am still dealing with this.  I always will be dealing with this.  Lymphedema is a lifelong problem once it develops.  Fantastic, huh?

It has been very frustrating for me because nothing seems to help.  I have three different compression sleeves and gloves (different sizes and compression levels) and they don't help.  In fact, the custom sleeve and glove make my wrist skinny, but my hand and the rest of my arm blow up.  Obviously something isn't right.  I do have supplies to bandage (wrap) my arm.  But that's uncomfortable, time-consuming and did I mention uncomfortable?  And it doesn't really help.  I also have a pump that we are paying a bunch of money for that is a pain to put on and it takes an hour to run through the cycle.  Since my restless legs are worse than ever, it's difficult to keep my body still for an entire hour.

Basically lymphedema is a pain in the ass...or in my case, the arm.  It's painful and annoying, unresponsive to treatment, and all of those treatments are expensive.

There is a little bit of hope.  Last week I met with a plastic surgeon who specializes in microsurgery for lymphedema.  And when I say micro, I mean MICRO.  We are talking lymph vessels that are less than a millimeter in diameter, and stitches with thread smaller than a human hair.

There are two types of surgery offered, depending on the patient.

• Vascularized lymph node transfer surgery: Surgeons transfer working lymph nodes from another part of the body, typically the upper groin or lower abdomen, to the damaged site.
• Lymphaticovenular bypass surgery: Surgeons perform this surgery by shunting, or moving, fluid from several dilated lymphatics in the affected limb to adjacent venules (tiny veins) to reduce pressure.

Dr. C believes I'm a good candidate for the second surgery.  He will make several small incisions from my hand to my upper arm and in those areas he will connect my lymphatic system to tiny veins to re-route the fluid that has nowhere to go.  

It's not a cure-all.  There is no cure for lymphedema.  But if this surgery is successful, it can reduce my swelling, hopefully significantly.  First things first...

I am having lymphoscintigraphy (https://www.radiologyinfo.org/en/info.cfm?pg=lympho) on Tuesday. Basically it's a nuclear scan to evaluate the flow of the lymph system in my bad arm. It's the first step in hopefully getting me some relief.  Once the surgeon reviews this scan he will determine which surgery, if any, I will benefit from.

I'm not thrilled with yet another surgery, but I'm even less thrilled with living the rest of my life with this uncomfortable and unsightly condition.  My arm aches constantly, hurts sometimes and makes me self-conscious all of the time.  I know it could be worse.  Believe me, I know there are worse things I could be dealing with.  But everyone deserves a little pity party now and then, and if I can educate people in the process, I'll step right up on my soapbox.  

Cancer truly is the gift that keeps on giving. 
But like the shirt I'm wearing today says, life is good! 

Kicking cancer's ass - day 1746

After what seems like months and months of nothing really to talk about, I have news!

First.... I had my six month check ups with my oncologist and my surgeon.  All is good, come back in another six months.  Yay!

Second....I had a follow-up CT scan to recheck some lung nodules that were on my scan in September.  Nothing new on this one and everything is stable!  Yay!

Third...I met a new doctor today.  I took the first step towards doing something about my lymphedema.  I'm OVER it.  It's ugly.  It's uncomfortable.  It's not responding to anything I do for it.  Sometimes it hurts.  It puts me at a greater risk of an infection, and developing serious complications from an infection.  So... enough is enough.

Fourth...Today I had an MRI of my abdomen to screen for pancreatic cancer.  I'm supposed to have this every year, and as long as nothing shows up, I don't have to see that particular doctor.  I won't know results until next week, but it feels good to have that done.

Hubby and I met with a plastic surgeon who specializes in microsurgery for lymphedema.  And when I say micro, I mean MICRO!  We're talking performing surgery on lymph vessels less than half a millimeter wide and using stitches thinner than a strand of hair.  Better him than me!

Anyway, after measuring both arms, the nurse quipped, "Well, in case you couldn't tell, your arms are two different sizes."  ha   No kidding.

First up will be a test to see where the lymph pathways in my hands and arms lead.... if anywhere.  This is called radionuclide imaging of the lymphatic system.  Basically I'll be injected with radioactive dye and then scanned to see where it goes and highlighting blockages.  

After that, I'll meet with Dr C again to discuss a plan.  He thinks I'll be a candidate for "lymphaticovenular bypass surgery".... during which he'd redirect my lymph fluid from the blocked areas to open vessels (veins).  It would be a 5-6 hour surgery, overnight stay, and then a month of babying my arm (basically keeping it elevated and not using it at all).

So.... more tests.  Probably more surgery.  Definitely more trips to Dallas.

Not a fan of any of those.  BUT.... I have hope.  I spoke with a friend of a friend who had this done, and she said it has been LIFE CHANGING for her.  

I have to stay realistic.  It's not a cure.  There is no cure.  And the results vary.... from zero improvement to about a 30% reduction.  I'll take it.  

This surgeon is in the same office as Dr T who did all of my reconstruction and remains one of my favorite doctors.  I have ultimate confidence in the team at UT Southwestern, so I'm going to go forward with this and see what kind of plan we can come up with.  

The following is a post from last June when I first went down the road of treating lymphedema.  Not much has changed.... except I am not settling for suffering with this any longer if I can help it.  

Fingers crossed!

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.  😄