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My Journey With Lymphoma Cancer
It all started with a lump in my left breast. It was the size of a pea, it was hard and it didn't hurt to touch, it just concerned me that it was there. I kept an eye on it and a few weeks later visited my physician and was told it was most likely hormonal and to take high doses of evening primrose oil.
I did this for the next few weeks and eventually after visiting a close friend was talked in to seeing her physician and was immediately rushed in for a mammogram and ultrasound.
All the tests came back clear... I was relieved.. No cancer... woo hoo
Or so I thought.
I kept an eye on the lump and noticed several more in the side of my neck a few months later. They were hard and felt like small marbles at first. Then the glands in my neck started to get quite large yet they weren't sore and I didn't have a cold.
I was feeling really tired all the time, exhausted almost and would be left feeling totally drained after walking up stairs.
I went to have my yearly pap smear and was told that the lumps in my neck were not normal, that it is very abnormal for those particular lymph nodes to become enlarged. I was immediately referred to a Lymphoma Cancer specialist at one of the states largest Cancer Hospitals.
I met with the surgeon and was told straight up that it would most likely be nothing and not to worry. That he saw dozens of women each day with lumps in their breasts etc and 9/10 have nothing to worry about.
I soon became the minority.
Within days blood tests were done, ultrasounds, and then fine needle biopsy.
Now, something they don't tell you about a fine needle biopsy, they can not NUMB the area prior to taking cell samples, reason being, they might accidentally contaminate the area.
So with no local anesthetic or pain relief I had a rather sharp needle jabbed in under my arm, right into the soft, tender armpit and also into the side of my neck. Not once but at least 10 jabs each area and then the needle is quickly moved up and down to puncture the cells of the lymph nodes and to collect a clean harvest.
I wont lie and say it didn't hurt. It really did.
A few days later I saw the specialist again and was told I needed to have my lymph nodes removed as soon as possible. The large one in my armpit and a few in my neck, as they were the 'marbles' that I could feel. They were 'Reactive' meaning, they were enlarged and reacting to something happening in my body. The lump I had felt in my breast a few months earlier was a reactive lymph node.
That is when I heard my name and the word cancer in the same sentence.
It was lymphoma and they needed to now cut me open and get some of the lymph nodes out to see if it was spreading.
Lymphoma is a type of cancer. Lymphoma is cancer of the lymph nodes and I had no idea what my lymph nodes really did or that they alone could get cancer.
I think I just sat there and tried to smile at my specialist and I didn't want to cry or get upset, because I was alone that day, I would have to remember all that he had said to me.
I was told that your lymphatic system is the body's very own signal corp. It sends out messages to the rest of the body when something isn't quite right or is under attack. In this case, my lymph nodes were under attack. So they were sending out the signals to the white blood cells who act like little soldiers and they come rushing to the scene to fight off the bad guys, (the infection) and in the process your lymph nodes swell.
I was then told that I would need lymph node removal surgery asap and I think I must of just smiled, so my specialist then explained what would happen.
Your Lymph nodes are like little train stations all sitting along a train line, the lymphatic system express.
Each lymph node is attached to the line and they would need to snip a few of the nodes off along the line and then biopsy them etc.
I left thinking I understood it all. Looking back I didn't have a clue. I left in a daze, scared and slightly angry.
I rang my husband who was working and that is when I broke down. I felt angry when I heard myself say lymph node cancer. I had seen the phsyician, I went as soon as I found the lump. I had a mammogram, so it wasn't fair, this shouldn't be the news I was getting. I came home and just cried, slept and then went online looking for as much information as I could find.
There is a lot of medical research and papers but unless you have a medical degree, it didn't make a lot of sense to me. I then spoke to a dear friend who is a nurse who calmed me down and explained that lymph node cancer or Lymphoma is one the best cancers your could get, if you got to choose a cancer.
It has the highest success rate and is the least aggressive of all the cancers. Of course, left unattended it will destroy you.
Within the blink of my eye I was in surgery and after not drinking for 17+ hrs I was finally on that hard, cold bed, looking up at masked surgeons, nurses, specialists and assistants. Listening to them discuss my procedure, their weekend plans, my weight for anesthetic and then I was asked why I was there today. Did I understand my surgery?
I remember saying yes, felt the jab of the cannula enter the back of my wrist and then heard someone say my name and told me to count backwards from ten. I then saw my surgeons face as he told me to relax, and to trust him and to drift off. I am guessing I wasn't going under as quickly as they expected.
I awoke a few hours later and was told I needed to say my name, my age, my reason for surgery today and did I want some pain relief.
I was given a juice box, a cheese sandwich and then left to feel beaten, bruised and dazed.
The next face I saw was my husbands, who was smiling and trying I think to look calm.
I was told I could go home as I wasn't charted to stay in hospital, something I objected to but as my surgeon had gone for the day, I was talking to walls only.
I walked out the ward, down the stairs and promptly threw up from the pain, the painkillers and the shock of it all.
It was a long drive home, trying to get my mind out of the anesthetic cloud and trying not to breathe due to the agony I felt in my neck and under arm.
We arrived home and I went straight to bed. I awoke during the night with terrible pain and a swollen arm, my whole body felt tingly and achingly numb.
I was in so much pain I was rushed back to the local hospital the next morning and given more pain relief.
What They Don't Tell You
I wasn't told prior to surgery the amount of nerves they are going to cut to remove nodes. I lost a lot of feeling/sensation under my arm and around my chest, underneath the whole arm and shoulder. The sensation in my neck wasn't as bad but I have lost feeling there also.
It's been four months since my first round of surgery and every day I deal with pain in my arm, and electric shocks, swelling and more. The shocks are courtesy of the nerves regrowing and 'talking' to each other and the swelling is something referred to as lymphedema.
One thing I wasn't told was you can never have your blood pressure taken on that side of the body ever again. You are not allowed to have blood taken from that side of your body and you will experience swelling which is result of the lymphatic fluid draining into your arm. After the node is snipped from the lymphatic system line, it sometimes drains into the body.
Most days my arm isn't swollen but it is always sore. I have to hang on and support it when I am in the car, to avoid it flying around when we hit a bump, as it constantly feels bruised.
When I asked my specialist why this is, I was told that the nerves get pretty mangled about when they go in to remove the nodes in your armpit.
I know I needed the lymph node surgery and I am extremely grateful for it and for all that the specialists do, it would of just been nice to have a note when you leave surgery to explain what you might feel/experience so that you know it is normal to lose feeling , to get the daily electric shocks and stabbing pains etc.
Not knowing is the frustrating thing. So where to next? What do you do after surgery.
For me my lymphoma is low grade, which means currently it isn't high enough to warrant chemotherapy. I have to watch my stress levels and what I eat and listen to my body and if I don't feel well, go straight back to my specialist. Which I did a month back. New lumps which aren't lymph nodes have appeared. It could be a secondary cancer or just my body reacting to the lymphoma.
Surgery is scheduled and this time I have lots of questions that need answers.
If you have any medical emergency, a serious illness or are injured ask as many questions that you can, even the ones you think are silly or are asked a million times a day. It's your body, listen to it.