The “guitar strings” are still there and may be for some time. There is so little known about lymphatic cording. In some women the cords last 2-3 months while in others they last a year. Pain levels are also individual, from very little in some to a great deal in others. As for me, I’m still strumming along, doing all I’ve been instructed to do. I have stretching exercises to do three times a day which has already helped tremendously with the movement of my right arm. A week ago I couldn’t raise it above shoulder level without a good deal of pain. Today I can already lift it straight up over my head with very little pain at all.
I also took it upon myself to use a recently learned skill. I told my doctor about it. She laughed but told me to carry on as it truly helps to lower the pain levels during the day all along the corded areas. “What is this recently learned skill?” you may be asking yourself. “Horse massage!” comes the answer. “Nay,” you my be thinking but alas it’s true. Now in the future I will know exactly how my horse patients are feeling. I just hope I don’t develop a craving for hay. While the equine massage technique is seriously helping during the day, the night time is uncomfortable. Sometimes the skin feels like a lit match is being held above it. This burning sensation comes and goes throughout the night and sleep is intermittent. However, even in this I feel a sense of adventure as I wonder, who will cross my path in the future who is dealing with lymphatic cording to whom I may say, “I know how you feel.” All I am going through now is simply boot camp. I have to smile and be glad as I think of soldiers in training, shouting their own encouragement with the words, “no pain, no gain.” I press on.
The incisions are almost completely healed now. There is still some swelling and bruising but very nearly back to normal. Therefore, I will probably be starting radiation therapy within the next two weeks. I’ll keep you informed and as always, thank you so much for keeping me in your hearts and prayers. Words can never fully express the encouragement you give me. Thank you so much.
The first two weeks after surgery was great. I could hardly believe there had been so little pain. I’m in my third week now post-op and things are looking strange…..really strange. A few days ago I felt a twinge of pain. Twinges happen after any operation so that’s no problem. However, with this twinge I instinctively touched my hand to the place that hurt which was on the right side of my abdomen. “Goodness gracious!” I say aloud to myself, “What is that?” I quickly get to a mirror and what to my astonished eyes do I see? Something that looks like a couple of guitar strings snaking its way downwards for about six inches. Upon further investigation, I see in actual fact, these guitar-like strings begin under the arm and proceed down toward the stomach area. How peculiar is all I keep thinking to myself over and over. The strings are tight and tender to the touch. For several days I had been feeling more sore than the first two weeks and now I am realizing these “strings” are the reason why.
I’ve been in touch with my Breast Cancer nurse who asked lots of relevant questions and confirmed I have something called Axillary Web Syndrome. That’s a new one to me; never heard of it. This phenomenon most often occurs under the arm and may proceed down the arm even to the fingers. In more rare instances it can begin in the armpit and proceed into the chest area or abdomen. So….I have to be rare with mine proceeding down the abdomen. Axillary Web Syndrome occurs when there has been a trauma, like surgery, to the lymph nodes. The lymph drainage system has sustained a shock to its system and responds by what is called a ‘lymphatic cording’. I thought my description of ‘guitar strings’ was rather picturesque but we’ll stick with the medical term used – ‘cording’.
The nurse has given me some stretching exercises to do for the next three days to keep the cords from tightening further. Tightening of the cords can greatly affect shoulder and arm movement. I’m not sure how it affects abdomen movement but I can say it’s a bit uncomfortable bending sideways. I’m to phone the nurse on Tuesday to say how I’m doing after these exercises and we’ll proceed from there.
Besides limited movement, this syndrome can lead to Lymphedema. This is something I would prefer not to have; hence another prayer request for you. Lymphedema happens, as does Axillary Web Syndrome, when there has been trauma, like surgery, to the lymph glands. This can cause the system to back up, sort of like a clogged drain, which in turn causes swelling. Again, in most women this would happen in the arm. I’m not sure what all happens when it’s in the abdominal area. At any rate, as I said, I would really prefer not to have this Axillary Web Syndrome to develop into Lymphedema. Although not life-threatening, Lymphedema is not curable and would therefore be a bit of a nuisance to deal with long-term. So, there we are with the latest news alert along this current journey.
I continue to be encouraged by the knowledge of your prayers and your many reminders of those prayers through emails and cards.
One other word….from here on I will always update my blog on Fridays unless there is something particular to report in the week. Thank you everyone. You bless me tremendously.
I have been recovering very well these past two weeks since the surgery took place. I have two incisions, both healing nicely. I’ve been doing my daily arm exercises and the surgeon was pleased that I can lift my arm straight over my head with no problem. I told her I can’t say I’ve had any real pain, just some soreness and discomfort at times. Tomorrow I may begin driving again but must still be careful not to lift heavy objects. I am feeling very well and must thank you all for your prayers for me. I have no doubt that your prayers have had a great deal to do with my easy recovery.
This morning I awoke feeling some of those “butterflies” of nervousness as I began to get ready for my appointment today. My mind was playing guessing games as to what the next steps might be. Now the guessing is over; the verdict is in. I’m happy to tell you that, in my case, chemotherapy is not necessary. I will have a three week course of radiation therapy and begin taking the drug, Tamoxifen, for the next five years. My doctor had told me on the day of surgery that she had to incise deeper than first expected. Today she explained the pathology reports showed the tumor was bigger than the mammograms or ultrasound had revealed, probably because it was so deep and could not be fully seen. She also explained the cell types were aggressive. I have been graded Stage II cancer. This is not bad news. The tumor was localized in one place and had not spread anywhere else; the surgery was a great success in removing the tumor and leaving clear margins around the excised area. I am feeling rather exhilarated. The incisions need to heal a bit more before they receive radiation. Therefore, the treatments will probably begin in 2-3 weeks. I’ll be keeping you informed.
In the meantime, I must tell you that my hopes for this current journey are beginning to be realized. I am meeting others who are going through various cancer treatments, each one with their own unique fears and feelings of what tomorrow may bring. It’s been interesting to note the immediate camaraderie between two people who have either had or currently have cancer. The women I am meeting do not know that sweet peace that comes from Father alone. I am praying that by the end of our journey together they will indeed know the One who gives such peace, who gives such promises as “I will never leave you or forsake you.” Heb.11:5 I love being involved in what I call “friendship evangelism”, just being who you are, with whoever you are with, letting Jesus love those around you through your own words and your own heart. I know you will be praying for me in these new friendships. I’m now recalling what Father put in my heart from the first moment of this journey…this is an opportunity to seize, not a curse to endure. Thank you for sharing in my joy everyone and for praying with me in these opportunities.
There was just one moment of disappointment when my doctor advised I do not travel to Central Asia for a minimum of six months after the radiation therapy has ended. She explained the side effects of the treatment. They vary with each person as far as skin burn and fatigue. Her concern is the extreme heat of Central Asia in summer (one must be careful in heat and sun after radiation treatments) and also concern of being in poorer conditions when it takes time for one’s immune system to fully restore and strength to be regained. I am longing to return; at the same time I know there is a purpose, designed by Father Himself, in my being here. I choose to trust Him in my disappointment. How thankful I am for a doctor that truly cares. I am blessed beyond measure….again!
March 8, 2012
I arrived at the hospital at 7:30am as instructed. There were several us there, all for some type of cancer surgery. The first of many nurses we would all see that day told our loved ones and friends with us that this was the time to leave us in their care. There were hugs and well-wishes in the room and then we were each led to our own, private, curtained-off cubicles. One by one, various medical personnel came to speak to us; anesthetist, surgeon, charge nurse, all with their forms and questions. I could hear a woman in the cubicle across from me softly crying. She was in for a mastectomy. She said through tears to the surgeon, ‘I don’t know if I can look when it’s over.’ I began to pray for this lady. I prayed if she knew Father, she would sense His nearness; I prayed if she didn’t know Him, that through this ordeal something would cause her to seek Him. Throughout the morning I was urged on to pray for the women around me. It was a lovely time of joining Father in His own desires to touch these women. I thanked Him that I know Him and His peace and courage. Thoughts came again to me as I talked things over with Father in my cubicle….’Show me how to use this experience. Help me to help others through this, perhaps to show them the way to You.’ That familiar joy quitely bubbled inside at the thought of opportunities that might come as a result of all this. What a mission field. I thanked Father again that no matter what happens to us on this earth, nothing at all is wasted with Him and indeed, He uses all the bad in our lives to show up His own goodness and then, blesses us in that goodness too. Only a true and living and amazing God can take the terrible and create wonderful.
At the appointed time I was prepared for my turn in the operating room. I was given tight, white socks to aid with circulation…designer leggings I told my nurse. We laughed. She asked me what I do for my work, so as I was being rolled under large lights, I told them about life in Central Asia. There was lots of activity around me; heart monitor attached, oxygen, an IV line in my left hand. The anesthetist says, ‘this might feel cold.’ She was injecting a milky-looking fluid. I said, ‘Ive wondered if I’ll really go to sleep.’ ‘Oh, you’ll be asleep,’ she assured. The next words I heard were, ‘Vickie, wake up, it’s over.’ Amazing! An hour an a half had seemed a few seconds. It was over. The surgeon walks in then. She gives me a double thumbs up. ‘The sentinel node was negative for cancer cells,’ she tells me. The sentinel node is like the gateway from the lymph nodes under the arm which, if cancer cells had reached this point, could have carried the cancer cells to other parts of the body. She explains the tumor area was deeper than she had realized so she incised deeply but removed all the cancer affected area and cleared the margins. That tissue is now in the lab being scrutinized for types of cancer cells. I’ll go back in two weeks and then be told the Stage of cancer I’m in and the plan of treatment, meaning chemotherapy and radiation or radiation alone. Since there was no cancer found in the sentinel node it is very likely I may only have to have radiation therapy.
I’m with dear friends through the week-end (I didn’t have to stay in the hospital as no drains had needed to be inserted) and am being well looked after. I’m having dog therapy here too which is always helpful! 🙂 I’m not to drive for a couple or weeks or lift heavy objects. I’m feeling very well, very little pain, and sleeping well too. Thank you everyone. Each of you are appreciated more than my words can tell.
March 7, 2012
So there I am this morning, back at the hospital, ready to receive an injected dye that will highlight the sentinel node for the surgeon tomorrow morning. This is the radio-active dye which has made me wonder if I could actually glow in the dark.
The first thing that happens, of course, is the injection of the dye. I’ve read the info sheet which clearly states the only pain felt is “a slight prick and stinging as the needle is inserted straight into the…..” well, never mind. I will assure you, now from personal experience, that it is in no way “a slight prick and stinging” but more of a, let me see…..oh yes, I know…..more like an ice pick going into the center of….well, as I said before, never mind. The ordeal only lasts about 4 seconds but I will never forget those 4 seconds; that’s because it’s not a “stinging” but a searing. One doesn’t forget a searing.
The next instruction is to lay on my back onto a movable table that will ease me forward. Digital panels are on either side of me and at times tilted to get photographs all around. The point is to make certain the dye has indeed gone properly through to the sentinel node. I am told to position my right arm above my head and hold it there for the next 45 minutes. I’m also asked what music I would like and am given a selection from Classical, Jazz, or ‘Oldie Goldie’ Pop. I choose Pop. “Oh thank goodness,” says the technician. “I get tired and sleepy with the usual request for Classical.”
I wriggle my toes in time to The Monkees singing “Take The Last Train To Clarksville.” Then I close my eyes as the music makes me reminise my teeny bopper years. Davy Jones is now singing “It’s Nice To Be With You”. I recalled my plans to marry him when I grew up; either that or become a Brain Surgeon. After a while I realize I’m humming to Mickey Dolenz singing “Pleasant Valley Sunday”. I’m sure it’s not in tune but then I think to myself, it’s probably not too bad considering my humming comes so soon after the ice pick incident.
45 minutes later and it’s all over. The technician wishes me well for my surgery tomorrow. I thank her and I whisper a “thank you” to Father God too, for His presence and strength in the midst of storms and ice picks and for all tomorrow holds. It has always been comforting for me at various times in my life to remind myself….we might question, “What will tomorrow bring?” but when tomorrow arrives, we find God has been there waiting and planning for us all the time.
I’ll write again after I’m home from the hospital. Thank you everyone and blessings of peace and joy be yours.
March 6, 2012
Thank you everyone, as always, for your prayers for me today. Knowing you were bringing me before Father has been a tremendous encouragement to me throughout this journey. I left for the hospital this morning with the following words of one particular email sent to me….
“your reference to the sudden appearance of the swirling and twirling waves will have reminded us all of the storm on the Sea of Galilee where also it came unexpectedly: yet, it was Jesus who had initiated the journey and was present right through”
The thought that Jesus had initiated the journey filled me with a great joy; a wonderful reminder that when we are surprised; Jesus is not. Thank you, John, for sharing what Father put in your heart for me. The words you wrote have not left me.
I had all the pre-op blood tests, etc. today and then met again with the surgeon. As on Friday, she was so kind and as happy as me in my inner peace, with no offers of a cup of tea needed this time. She explained once more the procedure and the reasons for her recommendation. She also said she had been reviewing my notes again from Alabama and from the last ultrasound given here in the UK by the first surgeon. She had seen “a shadow” and wanted to do another ultrasound just to check and also to locate the ‘marker’ that had been placed in Alabama to mark the tumor location.
I was taken to ultrasound and the procedure began. The doctor performing the ultrasound murmured, “I just don’t see it.” My surgeon was then called to see for herself. I had assumed the marker was difficult to locate. My surgeon came, looked herself for several moments and then said to me, “Vickie, the shadow I was looking for isn’t there and at this time I see no sign of a tumor.” You can imagine how I felt. I said, “Well, that’s good news.” She responded with, “Yes, it is. It could be that most of it was actually removed in biopsy.” She further explained that she will continue with the lumpectomy and also check the sentinel node plus four additional nodes to micorscopically check for cancer cells. She expects to find nothing in the nodes. I also have a hunch she will find nothing in the nodes. Should this be the case it is very likely I won’t have to undergo chemotherapy but would take radiation therapy as a precaution to kill any unseen cancer cells that may be lurking undetected.
I had walked into the surgeon’s office with that “peace that passes understanding” and I left with an added elation of great joy. Father arranged the swirling of my boat on Friday to put it on the course of His choosing for today. I have wonderfully been reminded that no matter the rage of the waves on the outside, Jesus is peacefully standing in the midst. He is master of the sea and the boat. How thankful I am for the ride.
March 2, 2012
I suppose like anyone I like surprises, but not shocks; not unexpected waves appearing out of a sea of calm. I like it when the boat is on course, the sun is shining and it looks as if we’ll be coming into dock as planned. Yesterday, my boat got blown off course, clouds covered the sun and we will not be docking in the manner previously decided.
The hospital phoned to say my “new” surgeon would like to speak with me before the operation next week. I was surprised by the phrase, “new” surgeon. What happened to the original one whom I had already seen and agreed to the recommended surgery? I still don’t know the answer to that question. I only know I’ve been assigned to a new surgeon and a new hospital and to top it all off this new surgeon has a new plan. She said she had to meet me as she had only received my medical notes from the original surgeon the previous day and put simply and in her words she was “aghast” at why and what was proposed, a double mastectomy. She said she felt the cancer was small enough to completely remove with a lumpectomy followed by radiation therapy to kill off any cancer cells that may be lurking in the area unawares. She said an actual BRCA, genetics testing, hadn’t even been done yet, so it was premature to assume I was at a more genetic risk than anyone else. She said we would talk chemotherapy treatment after the operation when the tumor and surrounding area had been more fully looked at in the pathology lab.
I’m being very honest with all of you when I say….it’s things like this that bring upon me feelings of bewilderment. When the doctor finished explaining her opinion she asked, “How do you feel about this?” I opened my mouth to speak when my words were softly choked back by tears for the first time. The doctor was extremely kind, took my hand, squeezed it between both her hands and in lovely British fashion, whenever there is a crises, asked me kindly, “Would you like a cup of tea?” This actually made me smile and the tears faded away. I told her how confused I now felt. I explained how I’ve felt complete peace from the moment of diagnosis, had immediately come to terms with the thought of a double mastectomy and now, another completely different proposal had just then, in a matter of several minutes, sent my boat swirling and twirling in the storm.
Over the years I’ve been through many crises times in my life and in the lives of those I work with in Central Asia. In each instance I have been steadfast that I absolutely, positively, no doubt about it, will not make any decision whatsoever without that “peace that passes understanding” that can only come from Father God Himself. I must make a decision by Tuesday as to what course of surgical action I will submit myself. I am confident that by Tuesday Father will have placed His own peace in my heart, that peace that does pass all human understanding, as He has done so many times before. At this moment, I have made no decision. The peace I am waiting for isn’t there. Between now and Tuesday I am concentrating on the loveliness with Father that comes when we choose to “Be still and know…” I have chosen many times in life to wait, be still, know. God’s formula has never failed before; I don’t expect it to now.
I have gone away for the week-end to stay with some wonderful friends (who also have two wonderful dogs – that always helps) so that I may spend time alone with Father, away from the normal hustle and bustle.
Stay tuned everyone. I’ll let you know on Tuesday what type of surgery I’ll be having on Thursday. As always, thank you for your prayers on my behalf.
I’ve had a call from the hospital. The surgery date has been brought forward to March 8th, one week today! Next week will be a busy time.
Tuesday, March 6th I go to have ‘pre-assessments’ done; EKG, EchoCardio gram, kidney function tests, blood tests, etc. This determines readiness for surgery.
Wednesday, March 7th I have a new experience….a radioactive dye will be injected into the right breast. (Here’s hoping I don’t glow in the dark) This will guide the surgeon to the sentinel node which is the first draining node from the breast. The surgeon examines the sentinel node and surrounding lymph nodes in order to detect if further cancer cells have entered this area and possibly then gone to other areas of the body. Depending on what is found here will help the oncologist better determine what type of chemotherapy is needed post-op.
Thursday, March 8th is surgery day. It’s a morning surgery. For those in the USA it will be taking place between the hours of 3:00am – 5:00am Central Standard Time. For those in Central Asia, the hours are 3:00pm – 5:00pm. For those in Australia, the hours are 5:00pm – 7:00pm. I am told I will be in the hospital only 2-3 days.
Something specific for prayer. I’m still feeling completely peaceful in my heart about the fact of being diagnosed with breast cancer but as the surgery day approaches, I find I’m starting to be a bit nervous about the operation itself. The only time I’ve ever been hospitalized for surgery was when I was 11 and had my appendix removed. That was a long time ago in the days when ether was used. (Please, no remarks on how loooooog ago that must have been..:) ) Anyway, for the last two nights I’ve awoken from disturbing dreams. In one I was having surgery when there was a blackout in the city and the generators didn’t work. In the second dream I was being intubated like a dog but not anesthetized yet; I’m being tied wrists and ankles to the table (again like a dog) and can’t let anyone know I’m still conscious. I awoke from both, very happy it was only a dream.
Thanks everyone for your many encouraging words, cards received, emails and blog comments. You bless me tremendously. You remind me of the words in I Corinthians 12:25-27 where Paul talks about us as the body of Christ, “…all the members care for each other equally. If one part suffers, all the parts suffer with it, and if one part is honored, all the parts are glad. All of you together are Christ’s body, and each one of you is a separate and neccessary part of it.”
Here is a quick summary of events which began five weeks ago:
January 16, 2012
I arrive at the Women’s Center of the Southeast Alabama Medical Center at 8:00am. The staff are extremely kind, compassionate, and helpful as always. I receive a core-needle biopsy to the right breast. Two mammograms received the previous week suggest a “suspicious area”. There are no thoughts in my mind of cancer as I have a history of cysts. One was surgically removed; several others were drained by fine needle aspiration. Although I had never had a biopsy, it still remained in the “just routine” category of my thinking.
That night I go to bed and reach for my Bible. I like to read through a book at a time, had just finished one particular book, and was ready to begin another. First Peter came strongly to mind. I’ve read First and Second Peter many times in my life but as I turned to the book I was giving no thought as to what Peter was about. I began with verse one. When I read verse six, it felt as if it had been written there, all those years ago, just for me, just for now. “So be truly glad! There is wonderful joy ahead, even though it is necessary for you to endure many trials for awhile.” (NLT) I could feel my heart beating hard as I read the words again and then continued with verse seven. “These trials are only to test your faith, to show that it is strong and pure. It is being tested as fire tests and purifies gold – and your faith is far more precious to God than mere gold…” (NLT) It was at that precise moment, with heart pounding, and an overwhelming sense of God’s presence, I thought to myself, “I’ve got cancer.” The second thought, “It’s okay.” The third thought was an awareness of Father speaking right into my heart the words, “This is an opportunity to seize; not a curse to endure.” At this point I was aware of my mouth. It was turned into a smile. It wouldn’t go away. There was too much inexpressible and unexplainable joy, a quiet and peaceful joy, filling me up. I talked with Father for awhile telling Him He has never given me a reason not to trust Him and I wouldn’t start now. I remember thanking Him for trusting me with this opportunity. I immediately began to think of all the people I might now meet who wouldn’t otherwise cross my path. Then I closed my eyes and slept deeply and peacefully.
January 18, 2012
The hospital phones with the biopsy results. Of course I’m not surprised as God Himself has already told me it’s cancer. Therefore, the news for me is not difficult to hear but when I hang up the phone, I pray for help as I go to tell the news to my parents. For me, this was the worst part of it all. They’ve just come through so much in previous weeks. My Dad’s two heart surgeries, my Mom’s fall resulting in splints on both arms while having the most horrible cold at the same time. Dad is still recovering. I see Mom is so tired and I have to give them this news on top of it all.
I walk into the room where they are waiting. “Mom and Dad, I’m so sorry to have to tell you this,” I begin. “You’ve been through so much.” I pause and add, “I’m sorry. It’s cancer.” I remember my Mom saying, “Oh no,” and covering her mouth with her hands as she stands to come and hug me. Dad stands too and I see two single tears trickle down each cheek. Seeing them makes me cry too and I feel their love and hurt and grief as the three of us hug in a triangle. Then Dad begins to pray and a calm settles. After a while we step back and we all know we will get through this. How could we not? God Himself is in the midst.
January 27, 2012
I arrive in England. I’ve had a permanent residency in the UK for 13 years which wonderfully allows me the blessing of free medical care under the UK National Health System. I have tried in past years to get medical insurance in the USA. On each occasion my application was denied as the insurance companies considered I worked in a high-risk area of Central Asia. Therefore, medical coverage was denied, but as we see, God had plans fo my care.
February 9, 2012
I have my first appointment with the surgeon. He studies my radiographs and path lab reports from the US. He performs an additional ultrasound which reveals multiple cycts in both breasts. He informs me his team will meet, discuss the week’s cases, of which I am one, and will see me the following week to discuss a plan together.
February 17, 2012
The surgeon and I have agreed upon a plan and I am completely peaceful and calm throughout. On March 13th I am schedulded for a double mastectomy. The surgeon, his two nurses, and I are even laughing together over various things and I get to tell them some Kyrgyzstan stories. All is peaceful and even joyful. As I leave the hospital I am so exhilirated, I can’t even go straight home so I drive along the seafront. Father’s words repeat over and over, “This is an opportunity to seize; not a curse to endure.” My imagination grows in anticipation of how Father is going to use this. I find myself telling Him I so want to be able to encourage others in their own “fiery trials” that life brings to us all. Life is not always easy…but it never has to be absolutely bad. I have watched Father in so many people’s lives, going through hard times, especially over the years in Central Asia, and I have watched God Himself be courage and peace and joy and strength in the most difficult of circumstances. Watching people in Central Asia stand strong in their own faith has always been such a tremendous encouaragement to me in my own walk with God. Now I find myself in a situation unexpected, and, of course, never desired….but there nonetheless and so far…..this uninvited journey is proving to be one filled with calm and surprising joy in the presence of a storm.