Lymphedema, part 2

Lymphedema is a discouraging outcome of surgery for breast cancer, especially if that surgery includes lymphedectomy, or  lymph node removal, of more than a few lymph nodes plus radiation of the lymph area.  It's debilitating, and depressing.  In some ways, worse than breast cancer.  It can occur almost immediately after surgery, or many years later.  Here is a reliable website giving the best current knowledge and pictures: 

http://www.nursingcenter.com/library/JournalArticle.asp?Article_ID=927625   You really need to look at this to understand what this posting is about.  

The article mentions checking one's arm daily for size, softness, and any injuries.  I do that.  Size remains the same - my left arm is about about 50% larger than the left, and that's not bad.  It is pithy, in that my fingerprints remain from moderate touch.  When I awake each morning, my left arm has a weird tangle of deep lines sketched by pillow case and sheet wrinkles as I dreamed.  I'm always relieved to see that when I elevate my arm, the pithy lines disappear and my arm, though red and somewhat swollen, is soft, the tissue is loose and flexible.  

If the lines do not disappear with elevation, if the muscle and tissue are hard, I'll go immediately to my doctor.  The danger here is cellulitis, infection, abcess.  To avoid this, I'm very careful of my arm and hand.  No injury or strain.  I wear a compression sleeve all day, and receive manual lymph drainage once or twice a week.  The lymphedema is also in my left chest wall and breast.  Although that area is included in the massage therapy, there's no compression girdle for it.

Although I'm not prone to self-pity, I was a bit taken aback by this.  However, I have discovered several wonderfully helpful things.  Water is one of them.  If I drink at least 2 litres a day, and this is hard for me - somehow I'm not a water drinker - but 2 litres daily is good for lessening the swelling.  The other help is exercise.  Although strain on the arm is bad - I can walk daily for 6000 - 10,000 steps, and move my arms with the motion of my steps, and it's all good.  The third thing is attitude.  I've simply stopped worrying about it.

It's a thing that's incurable. OK - I'm no longer dismayed that people gawk at my gloved, medically sleeved left arm.  I compensate without thinking, do what I have to do.  And life goes on.  It's a small thing, really.  Still, I hope to wake up one morning and discover both arms are the same once again, and my operated breast smaller than the other, as it should be. 

Guess we'd all like to wake up and find things as they should be.   

Lymphedema

I said I would do better with this blog; yet, it's been a month since my last entry. I think it's because I don't want to dwell on breast cancer. I want to move away from it. I don't want breast cancer to define me.

However, I started this blog to pass on what I'm learning and possibly help others. That is what does define me. I'm certain not many read this blog, but if it helps one single person, either directly or because a friend of relative saw it, then it's worth my effort.

After the surgery, after the chemo, after the radiation, there is something else that might occur in 14% of us. Lymphedema happens when many axillary lymph nodes are removed during surgery, and the remaining ones are destroyed in radiation. They removed 18 lymph nodes from my left arm-pit. One was found to have metastisized cancer cells. That meant I needed heavy radiation in the axillary and radiation concentration on the left clavicle.

The edema, or swelling, that occurs in some of us is because there are not enough lymph glands to carry lymph fluids away to the blood system in a specified area. It's the arm on the operated side that swells, also the breast and chest wall. This swelling may happen weeks after surgery, or not until several months later, or even several years. There are those who say lymphedema is worse than the cancer that precipitated it. The cancer is cut, poisoned, and burnt out. One can become free of it. Lymphedema is not curable. If it is not controlled, it becomes worse.

OK. So, that's what they say. We love such drama! I've Googled Images of lymphodema. Pretty scary.

My left breast, chest wall, and left arm were painfully swollen within one month of the end of radiation therapy, and lymphedema diagnosed.

When it happens, it needs to be controlled. Controlled - it will not get worse - and might eventually go away (evidence of this not proven, but I believe it). I'm taking active measures to make it go away. I wear a compression sleeve from finger-tips to shoulder from morning to evening every day. It's a bitch to get on, and such a great relief to take off in the evening that my "bed time" is rather early. I also have manual lymph-drainage massage once a week. (More about that later.) I take great, great care that I receive no needle stick, no blood pressure measurement, or any minor injury to my left arm hand fingers. No activity, such as heavy lifting, being bumped. It's surprising how alert I've become even shopping.

For awhile I was depressed about this - but I have discovered new approaches, new thinking. I'll write about these, and give links, within the next few days.

I'm back and I'm gonna do better with this blog!

My posts have dwindled, but my health and good spirits have not. I'm more than a mere procrastinator - I'm World Class. But, I am going to keep up my blog this time.

My breast surgery was last July. I'm an American living and working in Germany, have American Foreign Service insurance. Therefore, I'm treated according to German medical practices. I had a tiny private room in the Frauenklinik in Heidelberg, and my stay for breast conserving surgery (called lumpectomy in the US) was six days. They would not release me, or any patient, until all drainage had stopped and drainage bags could be removed.

The nurses were friendly, compassionate, and surprisingly humorous, and though most spoke little English they sympathetically understood and encouraged my German "med-speak" language attempts. My doctors spoke English and I welcomed their visits each day.

A few days following surgery I was given a liver scan in an alien part of that enormous hospital, and so learned to find my way there and back on my own. Given an invitation to attend a question-answer session about breast cancer in the conference room - I found that pace, too. During the forum with German and French doctors, I asked about Hormone Replacement Therapy. Guiltily, I thought my breast cancer might have happened because I took HRT medication for 13 years, only quitting six years ago when I heard there might be a problem. The doctors assured me the breast cancer would have occurred while I was on HRT, not 6 years later.

I was asked to decide about chemotherapy. Radiation was not an option. I was given all the facts, all the understanding, about chemo at my age. I was told there was only 10% chance chemo would help me. My doctor asked me if I wanted to know what he would tell his own mother. Yes. "Mom," said he, "don't take the chemo." I was 76, had been taking chemo for a myeloproliferative disorder for five years. I was happy to decide to not take chemo for IDC, HR2 breast cancer as well. I am taking an aromatase inhibitor for five years.

Radiation, however, was not an option. Six weeks of daily sessions started out fine, but as time passed I became more fatigued. At the end of radiation therapy my left breast and axillary were raw, burned. I couldn't report to work because I couldn't wear clothing above the waist.

That passed, of course. I was given a bone scan, and they saw a problem at the seventh cervical vertibrae. Spinal metastisis was suggested. A CT scan showed this to be not a tumor but spinal degeneration. Never thought I'd be happy to hear my spine is degenerating!

The 6 months Discreet Exam by CT revealed no abnormalities in breasts, lungs, or liver. However, there was "something" in the liver they believed to be cysts. Suggested blood test for liver tumor markers. Taken - negative. In July I must have my first post surgery mammogram.

I can see this is going to be one test after another - could be a continuous fear. I won't let it be so. I'm back to walking ten thousand steps a day, have dusted off my good camera - thank God every morning, and love every minute of my life.

At the time of surgery they removed 18 lymph nodes. Cancer cells had metastisized to one node, therefore, radiation was concentrated in the axillary region and clavicle. The one complication I've had is lymphedema of the left breast, chest wall, and arm. I'm told it's incurable, but I'm doing all that can be done. I have manual lymph-drainage massage twice weekly, wear a compression sleeve from fingertips to shoulder. I take extraordinary care of my left arm and hand, guarding against injury: no blood test sticks, no BP. Otherwise, nothing left to be done. It's a small price to pay.

post Surgery

I was in no pain that day.  Blissfully, thoughtlessly comfortable.  My daughter visited. Happy to see her, I don't remember a word we said.  Toward evening I walked cautiously to the bathroom and gratefully returned to bed.  I had no curiosity about the compression bandage on my chest, did not want to know what the operated area looked like or how much breast was left.  That night there was no watching a DVD on my laptop as I slid from my high point walk to the bathroom directly into sleep.  I woke briefly several times during the night aware of a nurse, always the same woman, carefully checking my bandage, checking the tightness of the compression stockings, taking by blood pressure, adjusting my bed cover. Kind person.  I never saw her again.

The next morning, I was fully awake and glad to see a breakfast tray of coffee and brotchen, butter, jam, and cold meat cuts arriving.  

I had a tiny private room - just big enough for the hospital bed and its paraphernalia, and one visitor's chair.  Built into the wall within arm's reach as I sat in bed, was a wee refrigerator, and a cupboard. I had my own bathroom. I was a private patient because of my American insurance.   What I loved about my very very small room in this old building was the floor to ceiling window.  The first floor window overlooked a tree-shaded path on the campus.  I was aware of medical students with backpacks biking, walking, scurrying to this hospital in the morning.  Later, I actually saw one or two of them on this station in their short white coats.  As a high school teacher, I loved seeing these students, now beyond secondary school, which is where we want them to be going. 

The day after surgery I was sent a physical therapist who showed me how to exercise my left arm while still in bed.  But I did not remain in bed long.  That day I walked the station, a short walk.  The second day after surgery I walked the entire wing, discovered an  interesting route back when I got lost. 

In the meantime, dressings were changed and I discovered what I still had for a left breast. The nipple was gone, and most below it.  The scar was harsh.  Eighteen lymph nodes had been removed. I had two drainage bags, one from the breast, one from the the left axillary.  Both bags  were pinned to my t-shirt.  In order to  shower, I had to stand outside the shower and stick my head in to shampoo my hair, then stick in my arms, legs - keeping my chest etc absolutely dry.  A challenge.  On my surgeon's rounds that day I said to him, " I washed my hair in the shower this morning, all by myself."  Said he, "Wow! So did I!"   I looked at this athletic healthy man's short hair, and loved his humor!  Bless him.

Surgery

 I was not given much of a choice about surgery. I don't think. There might have been a language problem. I could have been more assertive. The surgeon told me he would be doing "breast conserving surgery." I asked why not remove the entire breast. "In your case," he said, "this is the best plan." And that seemed to be that.

From my viewpoint, in Germany, Medicine decides and Insurance pays whatever's decided, which is the way it should be, of course. Breast conserving surgery requires a week's stay in hospital, and that was paid 100% by my insurance.  All of the other bills - surgeon's fees, anestheologist's, pathologist's fees, out-patient medications, examinations, tests, doctor's fees, were billed to me directly, which I paid, and I'm hoping to recoup from my insurance.

The day before surgery, my dear daughter arrived at my house in the morning, in spite of living over 100 kilometers away, in spite of her three children to ready for school,  she insisted she take me to the hospital. I was grateful. Required to check in the morning of the day before surgery, once through the paper work, we were directed to a Ward, or Station, in the enormous sprawling Frauenklinik. I was shown my bed, and my cupboard of drawers to unpack my stuff. I was relieved to see, above the bed, a place where I could plug in my iPod charger, cell phone charger, and laptop. So - this was to be my home for a week.  My daughter left, to return the next day - and I was now a cancer patient in a German hospital awaiting surgery.  

I was sent to various areas thoroughout the hospital for tests, XRay of lungs, CT scan of liver, and a photograph of my breasts (chest, no face, ID# only). And eventaully, I settled in for the night. They gave me no dinner, no water. I was not especially worried. All had been explained to me. It was what it was. It was manageable. I watched some of the second season of "Closers" on my laptop, and prayed a rosary after I turned off my lights and laptop.  Was I afraid?  Yes. But it was manageable.

Early the next morning, I was woken by a nurse giving me gauze panties and white compression stockings, and telling me to take a shower, and then put the panties and stockings on, and get back in bed.  Little did I realize that was the last completely normal, satisfying shower I would have in many months! I donned the required compression stockings and strange gauze panties and slid back into bed under the white hospital quilt. I was rolled in my bed to surgery. What a strange sensation, being rolled along flat on one's back. Interesting perspective, not wished to ever be repeated.

Once in the Operating Room, I was told to shift myself from bed to the operating table along side. At some point (no pun intended) I was given a shot. So smooth. They were so good. They gave me a shower cap and said, "Please put this on." I don't remember putting the cap on. The next thing I remembered, I was in a room with many people moving about wearing blue gowns. I had no idea where I was,  or who they were.  I had absolutely no idea who I was.   

But a young man began pushing my bed and said - "It's OK. I'm taking you back to your room. You will see, we're going back to your room." And, as we arrived on my station I began to recognize it, and I told him - "Oh, this is familiar." "Of course," he said.

Waiting for Surgery

Cancer cells are present in our bodies in increasing numbers as we grow older. But our immune systems usually zap them and there is no problem.  We count on that, we figure we will be among the greater percentage who are cancer-free.  If it doesn't work that way, we might believe our bodies have betrayed us, or we had lived incorrectly and caused our cancer. Bad mixture, betrayal and guilt. For awhile, waiting my for my surgery date, I was in that place - feeling guilty for what I might have done to cause it, yet feeling betrayed by my body for no justifiable reason.  

 

I had two weeks to prepare for hospitalization and surgery.  I cancelled my plane tickets, hotel reservations, workshops, plans to visit with friends and relatives.  I would not be leaving Germany for the States this summer.  I tried to organize my home, but didn't manage.  I appointed a medical power of attorney, and a general power of attorney. I made a Will. (As DOD civilians living overseas - we know we have to do these things.)  I watched MASH from the beginning to the end.  Eleven years of Comfort TV, watching from my good bed every night until I fell asleep. 

 

July 15, I checked into the Frauenklinik. I was beginning a journey that, strangely, did not frighten me as much as I expected it would. 

 

Discovery

True, the older we become,  the less surprised we are by life's sudden turns.  But still, seven months after a normal mamogram, I was totally unprepared for the discovery that changed my life. I'm a teacher. It was late May.  The school term was ending.  Nights were warmer and I bought a pair of lime green shorts-and-skimpy-top pajamas for the summer, to take to Cape Cod, after my week in Washington, DC: two workshops, which is part of what teachers do in the summer.

I tried the pajamas on, and posed in front of my mirror although Heaven knows why, I never expected anyone to actually see me in my new short pajamas.  The bottoms fit fine.  The top didn't, it flattened me.  And I saw in the mirror a lump in my left breast below the nipple. What in Hell was that?  I had not seen it or felt it before. The moment I touched it, I knew.  I knew. Hello - you're finally here, aren't you? I've been afraid of you all my life - and, now you're here.  

There was no sleep that night.  I did not touch the place again - it had already given me its information. The next day I called my Internal Medicine doctor for an appointment - as soon as possible, I needed to know what I already felt I knew. I'm an American working in Germany. The health care system here is different - and you're going to be seeing those many differences.   

I was told to come in to see the doctor that same morning. He sonogrammed my breast, saw the lump, and also saw a lump in the left axillary. He said, "It's amazing how clearly I can see both lumps on the sonogram."  Ominous words. He referred me to the University of Heidelberg Brust Zentrum (Breast Center) at the Frauenklinik (Women's Hospital).   The haste I was passed on to specialists, confirmed my understanding of what was happening to me.  It also calmed me.  Already I had begun to make a transition from heathy independence to trusting patient. 

Though it was a long waiting-room time to see my assigned doctor at the Brust Zentrum, once I entered his office, things happened quickly.  He was calm, but funny; soothing, but realistic.  He spoke to me in English.  He examined my breast, and the other, and the swollen lymph node. He sent me downstairs for an immediate digital mamogram.  There was no wait.  When I returned to his office , my mamogram was already on his computer screen.  I have never seen a clearer, more detailed mamogram.  I told him even I could see the lump. He looked me straight in my eyes and nodded his head slowly up and down, twice.  He didn't say a word. He didn't need to.

He laid me out on his table and did a core biopsy.  First, of course, a local anesthetic was injected. I was surprised at the large bore size of the biopsy instrument. He pressed it against my breast in two locations. It sounded like a heavy duty stapler, or a lightweight nail gun. Pop, pop!  It didn't hurt.  He told me what to expect in bruising as after effects.  I would get the results in a return appointment the following week.  Then he said, "Prepare yourself. I believe this is a malignant tumor. If it is, as I suspect, it is small and we know exactly how to take care of it. Not to worry." 

His words freed me from fantacizing worst case scenarios. Worst Case was now sitting on my doorstep, and it wasn't that terrible. Small, he said.  Still, this doctor specialist who does breast examinations for cancer in the major medical University of Germany - could be wrong.  Nevertheless, I slept very well the following nights.  Thank you, Doctors.

I didn't wait as long for my appointment the following week. When I entered the doctor's office he and his nurse were sitting casually in chairs to the side of his desk, and I was offered a place between them.   I almost laughed.  I was told with the utmost kindness, that my breast tumor was invasive ductal carcinoma, and it appeared there was lymph node involvement.  I was sent to talk to an anesthetist, and to schedule surgery and hospital admission.  (more to come)