A recipe for living with cancer.

Posts tagged ‘Lymphedema’

Hurry Up and Wait!

I love the expression, hurry up and wait.  This has been what I have done for the last two years dealing with Cancer and it’s consequences.  When I first saw my PCP that fateful day in May 2011 and she immediately got on the phone to get me a mammogram, that was the hurry part, then came the WAIT.  The mammogram was done and then there was the wait…someone had to look at it…then I had to wait until the next day until someone else had to look at it and confirm what the first person saw. Then the regular biopsy, MRI biopsy, CT scan, surgeries, hurry, wait, hurry, wait, hurry, wait.  It’s amazing we stay sane at all with all of these ups and downs and worries.

The whole experience has been like this — the first visit to the surgeon…we need to do surgery…but you can go to Japan first because it’s probably taken 5-10 years for the cancer to get to this point so surgery can wait.  Then when I refused to have my lymph nodes removed the surgeon said, well now you have to wait for surgery and do chemo first.  I would hurry to my chemo appointments and have to sit and wait.  See the oncologist…sit and wait.  The nurses giving me chemo never made me wait, they knew, they understood, let’s get this going and over with.

Now I want to hurry, I want to hurry and start PT, I want to hurry and get a sleeve on my arm, I want to hurry before it gets worse and my sub-clinical turns into clinical lymphedema. But I have to wait for the appointments and the measurements and the therapist to call the sleeve maker and then I can get the sleeve.  I don’t want to wish time away, but there is an urgency to all of this, the urgency of being without the tumor, the urgency of getting through chemo, radiation, the urgency of getting the surgeries over with and recovering, the urgency of being healthy again, the urgency of wanting to be done and move on, the urgency of never knowing what tomorrow will bring but wanting to spend it the best way possible.  Whatever that means. Like everything else in life, I just need to wait.

My grandson keeps asking his Mom, when will it be my birthday I can’t wait…she tells him when the trees all have green leaves on them, the flowers are in bloom and the weather gets really warm (July). He can’t wait for his birthday, he wants it to hurry up, for the present, the party, the cake?  Why should he have to wait?  I have had to wait for the painful, the uncomfortable, the disgusting, the depressing, the unnerving, why should he have to wait for the fun and the happy?

Maybe I should just make him a cake and give him a present now because who knows what tomorrow brings while we hurry up and wait.

 

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But I Look Fantastic!

Cancer is the gift that keeps on giving, daily.  I was hoping to place Cancer into my memory files and only think/worry about it during annual exams or checkups for minor issues; this has been far from the truth.  I never liked the term survivor, never believed in the term cured and certainly don’t feel like a role model or hero, and Cancer haunts me everyday.  Every morning I obediently take my aromatase inhibitor pill to prevent any estrogen left in this body from growing and reeking havoc.  It is a teeny tiny pill, but one that is uncoated.  Therefore it has a terrible bitter taste when it hits your tongue and I try every which way to get it down without getting that small burst of yuck.  A simple reminder, but still a reminder, but I was otherwise getting into a better place with my Cancer.  And no matter who I run into, they all say I look fantastic!

Then 8 weeks ago my right hand and arm swelled.  I called the Dr.s office in full panic mode wanting to get an LDex immediately.  This is a revolutionary little machine that measures the fluid in both arms and can diagnose Lymphedema at a subclinical level, which is where you want to catch it if you are to get it. They wouldn’t see me until I went to my PCP and she could rule out a blood clot and/or an infection and if I had neither of those then I could come in for a measurement.  This test (totally non invasive and takes 2 minutes) costs $200 each time and most insurance companies do not cover the cost, luckily UPMC insurance does.  I have had 6 of these measurements with a baseline from before any surgery or therapy to after surgeries and today.  Most women, the 35-45% who get lymphedema, may not even know about this test, can’t afford it if insurance doesn’t cover it and will end up with clinical lymphedema, which is painful and requires more treatments than subclinical.

I digress, my PCP found no clot evidence or infection in my right arm and sent me for a “just to be sure” Doppler to show no clot.  Long story short, my right arm was fine but when they did the Doppler on the left for comparison, lo and behold I had a clot in my jugular- probably provoked by my 11 hour reconstruction surgery.  No pain, no symptoms, it is what is called an incidental finding.  What followed — appointments, phone calls with my PCP, Hematologists (yes plural) and arguments with Tom on what course of action to take — he wanted me to take a baby aspirin a day and forget about it.   Final answer:  anticoagulation therapy for three months to be safe… Lovenox shots twice a day (shots of heparin which I had to give myself in the stomach) for three and a half weeks, plus Coumadin daily dosing until I got to the INR number they wanted and, this is the really fun part, blood tests every other day during four weeks until they get my dosage right. I am down to 2 blood tests a week. When I am done, then I get to go on baby aspirin for the rest of my life.  I’ve gotten to know the ladies really well at the blood bank…nice women, Mom would be happy, I’ve brought them homemade cookies!

So while enmeshed in this incidental finding I put off the Lymphedema issue…until today when I went to see the Lymphedema specialist.  The previous 5 LDex tests I have been 100% normal, no fluid, the numbers and I looked fantastic.  My arm has been bothering me, aches, a bit sore and stiff, but I am getting old and these things happen.  Going in this morning that little voice in my head whispered…you don’t have Lymphedema you are just nuts and besides you look fantastic! That same little voice told me I had breast cancer when I found the lump and it also told me I was making a huge mistake doing the reconstruction surgery.  Confusing huh, I am through with that little voice.

So you guessed it I now have been diagnosed with subclinical Lymphedema.  This is where you want to be if you get it…but now the chance of filing Cancer away and not thinking about it every single day is pretty much impossible.  Look, I am still blessed, I am still alive, I still look FANTASTIC, and I probably still have Cancer in some cell hiding out somewhere in my body.  Will this change what I can and cannot do…unfortunately in some areas dramatically.  I now have to do PT, learn to massage my arm, (so does Tom to help) go through some very easy – painless- laser treatments on a scar to try and release the pressure it is putting on my lymph nodes (3 weeks every other day- 8 weeks off- then three more weeks) and wear a compression sleeve  (and possibly gauntlet/glove) every day for the rest of my life.  I cannot: pick up anything over 10lbs. (groceries I don’t care about but my grandkids…), shovel snow, suggested I wear gloves when I do everything, be really mindful when I cook and bake, if I get a cut and it gets red I must immediately call the doc and go on antibiotics and try to raise my arm every hour or so to help drainage, and try not to make myself crazy worrying about it.  This is all to keep it at the subclinical level.

I laughed after the appointment, because that is exactly how it went…10 minutes of what I need to do, what I can’t do and then she said, “but don’t make yourself crazy.”  Really???

Then I got a tad depressed and wanted to eat a bacon cheeseburger, which I am going to do for dinner.  As I have aged and gone through this, I have begun to better understand life and death. I can now understand why my Mom wanted to die after my Dad did.  Why my saying, “but don’t you want to live for your kids and grandkids and great grandkids?” made little difference to her.  She’d been married and dependent on my Dad for 60 years and when he died a large part of her died as well.  I can better understand why my friend Linda gave up living because the illnesses and treatments just got to be too much, to hard, to painful and to limiting.

I am positive and ready to conquer whatever is put in front of me 95% of the time, but today I waivered, I came out of the office charged with being proactive, obedient, and diligent, body aware, new rules of what I can and cannot do  and all those other things for the rest of my life.  You know what I mean, some nights I just want to go to bed and not: exercise (90% of the time I don’t) wash my face, floss, brush, put on hand cream, take my pills and let the dog out.  Now I’ll need to add massage my nodes.

I guess I am complaining, feeling a bit sorry for myself knowing it could be way worse, not wanting to have lymphedema as bad as my Mom and as luck would have it Tom flew out of town so I am having my own private pity party.  It seems every time he goes out of town something else medical comes up for me.  I’ll be fine, it’s just another bump in the road and there are two companies that make outrageous compression sleeves, wild colors and patterns.  I will continue to look fantastic!

Lympedema-a percentage here, a percentage there

I am participating in a program which carefully monitors breast cancer patients for lymphedema. The idea is to identify any symptoms even the smallest early on and treat it before it becomes even obvious to the naked eye and prevent it from becoming uncontrollably awful. There is a numerical scale and if you move 10 points or more you need to address things immediately. What this means is going from not wearing a compression sleeve to wearing a compression sleeve.

In my continuous search for information on cancer, mastectomies, chemo therapy I have now added lymphedema to the list. The internet has been amazing with the quick availability of information but especially lectures from doctors, specilists in field like reconstructive surgery, cancer therapy, lymphedema research, are among the tens of thosands of lectures out there now avaialble to us. For those of us that can remember, think about the hours researching in a library through the Dewey decimal system, books, papers and microfish, remember those crazy machines…I digress.

I found a lecture from Stanford Universitthaty which was tremendously helpful in my understanding and decision making for surgery. And found an equally good series on lymphedema also from Stanford which was helpful in understanding it and towards the end disturbing for the changes lymphedema can cause. I don’t have lymphedema, but want to be prepared just in case.

I had a baseline test done in November and today I had my second test, I went up six points. In discussion with the nurse there are so many variables; was the first value correct and is todays number correct? You cannot have any metal on or in your body as this will change the value and the skin expanders have a bit of metal. I will have another test before radiation therapy starts and will have regular measurements thereafter. Only 20% of breast cancer patients get lymphedema, so once again I am faced with chance and percentages.

When my lumps were first seen, the radiologist was a 98% sure it was cancer. When my chemo therapy was over, the tumors had shrunk 50% and 33%. The oncologist said I have a 90% chance of being cured. Since my tumors didn’t disappear with chemo I need radiation, the radiologist said women in my category who don’t get radiation have a 20% chance of recurrence, with radiation, it goes to down under 5%. Lymphedema, there is a 20% chance I will have it and 80% chance I will not. And the thing about lymphedema as of the 2010 lecture, they don’t know what the risk factors are in getting it.

I am 100% sure of one thing a percentage here a percentage there…this is nuts!

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