At the end of April, we were spending a weekend at the beach. I woke up one morning and was laying on my left side. Almost immediately, I realized my arm was sore and hurting. My initial thoughts were that I probably just slept on it wrong and it would work itself out. Later that day when I showered, it was still bothering me, and I noticed that it was difficult to raise my left arm when I was washing my hair. Once I got out of the shower, I was putting on my deodorant and my underarm was sore to the touch. Of course, a million thoughts start running through my mind……and I knew I needed to send my oncologist a message.
My doctor responded promptly and said it was probably lymphedema. She said that oftentimes, the first sign of lymphedema is aching of the arm. She said it was not likely that the aching was due to swollen lymph nodes, unless I was able to feel them. Then tend to be tender when they get large enough to feel. She recommended me taking some meds for a few days and if it was not better, to please let her know. would recommend trying some Tylenol and waiting a few days. If it does not get better, please let us know.
Three days later, even I was sure it was lymphedema. By this time, my left breast was also swollen. Another message to the doctor, and she sent me to see the lymphedema PT specialist and also prescribed me a compression sleeve and compression bra. Sounds like fun, huh?
The first of May, I was seeing the lymphedema PT. She measured my arm at different places to see how much it was swollen. She felt like I needed to get started on some PT right away and try to get the lymph fluid moving out of my arm and breast – thus began my frequent trips back and forth to Duke for PT. Eventually, I was measured and “fitted” for the compression bra and sleeve.
Meanwhile – the PAIN continued. It wasn’t unbearable ALL the time – but it was pretty constant. The pain was mostly isolated to the middle area of my bicep – which seemed really strange. My therapist gave me a make-shift compression sleeve to wear until my real one came in. That seemed to help some with the pain.
Week before last, I saw the physical therapist on Friday afternoon. He wrapped my arm that day with cotton and bandages and told me to wear it a day or so and then unwrap it. During this time, I started feeling more pain in my bicep area – but I just assumed it was because there was compression on that area. I took the wrapping off on Saturday night and all was well. I then put the make-shift compression sleeve back on to sleep in over night. When I woke up Sunday morning and took the sleeve off before I showered – my entire arm was red and inflamed and broken out in a rash. Ugh – not good. My husband felt like maybe it was a reaction to the make-shift sleeve – however, I reminded him that I had worn that sleeve multiple times and never had a problem. Fortunately, I had a PT appointment scheduled for Tuesday, so I knew we could address the rash then.
I knew pretty quickly when my PT guy looked at my arm that it wasn’t good. Because of the “rash” he wouldn’t do any therapy on my arm that day…..and he asked if it was okay for him to go grab my PA and have her take a look. Of course I didn’t mind. Well, my PA was not available, but he brought another PA in and she said that we definitely needed to have my medical oncologist come take a look…….and she came in and agreed that it was definitely infected, and she would need to call me in some antibiotics…..and said if it got any worse, to call her and I’d have to come in for IV antibiotics. Goodness…….I really don’t do anything half-ass!!!
Early the next morning, my oncologist called me to let me know what meds she had called in and she said she really wanted me to get them right away and get my first dose by lunch time so I could get in 2 doses that day. No problem. In talking with her I realized that my “infection” was, indeed, cellulitis. No bueno! And, of course, cellulitis can be very dangerous if not treated promptly. So…..THAT’S why my PT wouldn’t “massage” my arm the day before. He didn’t want to risk spreading the cellulitis throughout my body.
My sweet friend Paula said “now Sonja, how can this be…..you only had ONE lymph node removed…..you need to ask the doctor about this.” And I did. I’ve spoken with ladies who have had 14+ lymph nodes removed and never ever had any issues with lymphedema. Well – we learned way back in the beginning of this cancer mess that I am definitely in the 1%!! While I only had one stinking lymph node removed – I received 31 rounds of radiation. Several rounds of that radiation specifically targeted my lymph nodes. My team of doctors (med oncologist, rad oncologist and surgeon) agreed that IN MY CASE, it would be more effective to remove just the sentinel node and aggressively treat the surrounding lymph nodes with radiation since the cancer had invaded my lymph and vascular system. So yeah, I only had ONE STINKING lymph node removed……but they dosed me up pretty good all around my breast and under arm area…….which, unfortunately for me, has caused issues with my lymph nodes draining as they should.
Sooooo because of all of this, my PT recommended that I get a lymphedema pump. What is that, you say? Well, yes – it IS a thing. A most unusual thing at that. It is a pneumatic compression device used to stimulate the lymphatic system. So basically – it’s this really strange contraption that I wear on my thighs/abdomen/chest/arm and lay down for an hour and the machine “massages” my lymphatic system. I won’t dare try to explain it all – it’s way over my head – but here’s an excerpt from the company’s website that says what I can’t…..
The system features a programmable controller unit with numerous program options to meet individual patient needs. When activated, the air chambers sequentially inflate and deflate, creating a wave-like motion that directs lymph fluid from areas of impaired lymphatic function toward healthy regions of the body where it can be absorbed and processed naturally. Inflation lasts just a few seconds per chamber. Only one chamber is fully inflated at any one point in time, providing a treatment sequence and duration similar to manual therapy.
So this “pump” finally arrived on Saturday, however, I was unable to start using it until the cellulitis cleared up. Today I finished up my antibiotics, and there was NO REDNESS and NO PAIN in my arm – Praise the Lord! So today, I was able to use the lymphedema pump for the first time. And ya’ll – it was like the hot mess express over here.
Hunter, bless his heart, had to help me get velcro’d into the suit – which is no easy task. I’m hoping it’s going to get a little easier as we go – but we struggled a little bit today! This pump is hooked up to a control box that has been pre-programmed for my specific needs……and a “session” lasts a full 60 minutes. Right now, they want me to do this 2xs a day. It wasn’t as bad as I thought. It was actually quite relaxing.
However, I am proud to say that I was able to complete two 1-hour sessions today. So I am hopeful that this crazy looking contraption will help keep the lymphedema away! At minimum, it will allow me to do this at home and not spend so much time on the road and in the doctors office. Granted – I love my folks at the Duke Cancer Center……but I prefer my visits to be few and far between these days!
It’s been a long month for sure……lots of doctors visits and tests and PT and more PT…..but I can see the light at the end of the tunnel.
So now you probably know more about lymphedema than you ever cared to. Trust me – I wish I didn’t know about it……but it’s a small price to pay for being here and being otherwise healthy.
Thanks for all your calls and texts and prayers and cards. They mean so much.
Our world needs our prayers more than ever right now. So much hate and dissension. People of ALL colors are hurting and only ONE person can heal those hurts……and that’s Jesus. My heart is burdened for so much and so many right now……friends and family and church members – so many are hurting and I pray that they are leaning on God during these difficult times.
One of my favorite quotes is this:
Kindness matters ya’ll. And I love that this quote is done in many different colors……just like the many different colors of God’s children. And no matter who we are or where we are – if we all just tried to spread kindness – just a little bit each day…….can you imagine what our world and our lives would be like? It’s not that difficult……and doesn’t cost a thing.
Did you know that kindness releases “feel good” hormones? Who doesn’t like to feel good? Here’s some ways I’d like to challenge you to show kindness to others you encounter…….
- share a smile 🙂
- hold the door for someone
- compliment someone
- text someone who has been on your heart
- genuinely THANK the cashier at the grocery store
- leave a note for the mail carrier thanking them for their extra effort
- run errands for a sick neighbor/friend
- give someone a ride
- invite a friend over for dinner
- say hello to strangers in the elevator
You get the picture!! Being kind is not that difficult!
How are you going to show kindness to someone tomorrow? Make it a priority! You will bless someone else – and yourself as well!
Micah 6:8 NASB
He has told you, O man, what is good;
And what does the Lord require of you
But to do justice, to love kindness,
And to walk humbly with your God?