My Breast Cancer Journey
I am a 45 year old breast cancer survivor, with a 60% chance of living to 47. Any poker player would tell you not to play those odds. But I’m all in.
So I got into the “Cancer Warrior” mindset, and started my path to beating cancer at all cost. Surgeries? Yes! Radiation? Yes, please! Super aggressive, dose-dense chemo? Bring it on! A life-long regiment of hormone therapy pills? Sign. Me. Up. If it didn’t knock me over dead on the spot, I’d do it, again and again, until I was free of cancer.
Yet I could feel myself getting weaker and sicker with every treatment.
Some signs were acute and obvious, like the burning stream of blisters that ran up my arm as the first dose of a new chemo entered my veins. Others were painfully debilitating, chronic, and all were compounding.
Weeks became months… became years. In absolute stillness. Breathing… thinking… doing nothing more than watching my family’s lives progress without me. This observation brought a zen-like understanding, an enlightenment.
The path I was on was breaking me down. I needed to do things to strengthen myself and protect myself, preventing cancer’s return — without killing myself in the process. This became my new mindset, my new path.
And throughout everything, every sick, dark, painful experience has been countered with the most love I’ve ever witnessed, the best people I’ve ever known, and new appreciation for every single moment that is my life.
This is my cancer zen.
Below are some entries from my personal diary of this journey
This is me. I just found out I have cancer.
Stage 3B. Invasive Ductal Carcinoma. Breast Cancer.
I’m 36 years old, a mother of three. I’m in generally good health. A vegetarian since I was 11, I eat mostly healthy, “real” foods. I exercise regularly, at least a few times a week, and I recently ran my first and only 5k, where I (proudly!) did not come in last!
Thanksgiving was closing in, and we made plans to visit my parents in southwestern Virginia. It was especially important for me to spend the holiday with my father, as he had recently been diagnosed with lung cancer and was beginning to show signs of losing his battle.
As I was packing, I noticed an odd sensation, as if there was a string somehow attached to the skin on the inside of my breast, and it was being pulling inward from the inside. Interesting. We kept our quick pace, got the children and dog packed and into the car and headed to the mountains.
About two weeks later, back at home, I was changing my shirt and felt that same sensation. I looked in the mirror, and noticed a dimple. It looked as if there actually WAS a string being pulled inward, from the inside. Without a thought, my fingers made their way to my breast, where I felt behind the dimple a lump, the size of a marble, and every bit as hard and solid.
As soon as my finger made contact, I felt a shift in the universe. Sound and sight and consciousness swirled around me. I was dizzy. I was nauseous. I was stunned, shocked. Time stood still as I stared blankly into my eyes in the mirror. I blinked. I knew immediately. I just knew. I had breast cancer.
I went to Urgent Care in Nags Head first thing in the morning and was told to have a diagnostic mammogram and an ultrasound, both were scheduled for that Tuesday.
At the Outer Banks Hospital the mammogram and ultrasound both looked “suspicious”. I was scheduled to meet with a surgeon that Thursday.
I am thankful that the small town where I live has so few people that I can be fit right into the schedules and not have to wait a more unbearable amount of time between appointments.
I met with Dr. Joe Jenkins of Carolina Surgical, at Regional Medical Center in Kitty Hawk, NC. From the first moment I was very comfortable with him and his team. His nurse Susie was a firecracker and both of them were my fast friends.
He read the mammogram and ultrasound reports and said he’d like to get a core biopsy sample, right then and there in the office. I don’t know why I didn’t expect it, but it was seeming so sudden.
He used what I refer to as “the nail gun”, which shot a hollow needle into my breast and retrieved tissue from the breast in the core of the needle. Like in geology, where a core sample of earth tells you what’s in the ground below. As is always a risk in a “blind” biopsy (where the doctor is not guided by live digital imagery) he hit a nerve and a blood vessel, which made what should have been a minor procedure incredibly painful and messy.
The strip of barrier islands we live on is a really remote area. Dr. Jenkins works primarily out of an office in neighboring Elizabeth City, and only came to our area on Thursdays. So, we made a follow-up appointment for the following Thursday, but he agreed that he would call me with the core biopsy pathology results as soon as he got them.
At 4:50 pm, meeting with a client in my office, I received the call letting me know that, indeed, I had active, invasive breast cancer. I hung up the phone and completed the meeting w/ my client.
After he left, we shut down the office and the house and tried to let it sink in. It might never sink in. Scott sat with me for a long, long time. Then we talked to the kids, put them to bed, and called family and let them know.
My father had been battling lung cancer for a couple of years, and because of that the call to my mom was the hardest thing I’d ever have to do. “Mom, I have cancer, too.”
We decided we needed a plan, and the plan was simply to beat it. We’d read up and find out exactly what I needed to do – to eat, drink, breathe and live – in order to beat this. We’d surround ourselves with our many friends from different backgrounds and find out what they knew and how they could help. We’d research the diagnosis and the treatments, meet with doctors, and do whatever we could to beat it.
- Pre-surgery and based only on the results of the core biopsy I have a 90% chance of living. Not too bad. 90% 90%
I met with Dr. Jenkins again to discuss my options and make some plans. He recommends a lumpectomy, which means he will go in to my left breast and cut out the tumor, as well as some area, or margin, around the tumor, to ensure he got all of the cancerous cells.
I also set up an appointment to talk with a local plastic surgeon (well, local as in Elizabeth City, but visiting Kitty Hawk on Thursdays as well – lots of medical opportunities around here on a Thursday!). He will tag-team operate with Dr. Jenkins, immediately following Jenkins’ tumor removal with the reconstruction surgery.
He will essentially perform a breast “lift” on the right breast, to match the new size and shape of my post-lumpectomy left breast. I thought this would be called a breast reduction, but since it is only a small amount of tissue being removed, it is technically classified as a lift.
That doesn’t sound too bad. I can do this. I might even have “better” breasts afterward! Well, any breast without a tumor is better than my “before” breast.
Both surgeries are scheduled for Wednesday January 5, 2011 at the Albemarle Hospital in Elizabeth City, NC.
Nude woman vector illustration by danjazzia
Today I spoke with my good friend Janice about beginning some reiki treatments to aid in the healing. She and her friend Rose will start some energy work on me this week. I hope to go at least every other day until surgery.
Great reiki session today and planning another for tomorrow and also Tuesday… gonna hit the recovery ground running!
Facebook post to the world:
So I guess the time has come to let everyone know…. I was recently diagnosed with cancer. Invasive Ductal Carcinoma. Breast Cancer. There, I said it.
I am having surgery on Wednesday the 5th and would really, really appreciate everyone’s positive thoughts and prayers being sent out on that day. Radiation and Chemo are likely to follow over the next few months. Please keep us in your prayers.
Also, please don’t be upset if you are a close friend and I haven’t told you personally. It’s a trying time and I mostly was just trying to hold everything together and get through the holidays with the children. I haven’t really told many people yet. Same thing if you send an email or call and I don’t reply right away. Your calls and emails mean so much to me, I will reply to everyone just as soon as I can. xoxox love you all!
Susan, we were so sorry to hear about your cancer. This month marks 14 years since Karen had her first operation. She’s had so much radiation that I swear she glows at night. Knowledge is power, please feel free to contact Karen about anything she is an amazing resource and not just on technical issues. Rely on your own instincts when considering options, the doctors are good, but do NOT know everything and there are many options. You are strong, you will do well!
I am so proud of you and so grateful that you liked the package. Holding things in is not good. I know you do not want the kids or Scott to be concerned. I remember the brave front I put up, but I suggest you express your feelings to someone. I”m always here. The recovery is going to be harder than the surgery. You will need help and YOU WILL ask for it. Let yourself recover emotionally and physically. It is important. You have a long way to go and I’ll be there every step of the way. I love you. It will be okay. Scary for awhile but okay. I am ten years cancer free and a 14 year surviver. You are a survivor now also.
It is damn near impossible to describe how much I love you. You know I’ll be there in a heartbeat if you need anything at all.
I have never seen such an outpouring of love,support and prayer. Remember we come from the old line stock. We got here the hard way an nothing going to stop us now. stay strong.
I am here for you if needed.. Always.. You will be fine as you will take charge of your own health which will guide you thru this. namaste.
I beat my cancer, Susan. You are going to beat yours. You will learn one big lesson through this: It is hard to deny the power of prayer when you are on the receiving end. Rally round your friends and family during these times. And don’t shy away from the things that feel selfish, it’s our turn to give back to you. These things we give are only gifts if you accept them. Hang tough, Susan. You got this.
You are one of the strongest, most positive people that I know. Stay true to yourself and we are here for you everyday and anytime! You will be in my thoughts and prayers today, tomorrow, and onward.
We are here for you and with you throughout this journey and will be with you to celebrate when the cancer is gone! Healing thoughts, Reiki, Love and positive Energy surrounding you… Knowing you are on your way to perfect Wellness!
We are standing right there beside you. All of our love, positive energy, and prayers are with you – always.
The only thing you need to be is – SUSAN. That is quite simply – the best. Laugh, cry, rant, rave, strong, weak, positive, not positive, scared, brave – those are all human emotions and we all have them. So feel them, don’t pressure your emotional self. BE SUSAN. It will not fail YOU.
To our friends:
This is a BIG thank you from Scott’s parents to all of Susan’s and Scott’s amazing friends who have so kindly, openly, and lovingly given support, food, babysitting, comfort, time, and friendship. How blessed we are to have you surrounding them.
You were only given this life, because you’re strong enough to live it.
I truly believe you can conquer anything, Susan! Stay strong!
At the start of the surgery, the surgeon removes a single lymph node from the patient. The very first one in the armpit or axillary area, called the Sentinel Lymph Node. The lymph system filters your body to find intruders, like the flu virus, or like cancer. It sends notice of the intrusion back to the brain, which develops a strategy for removing the problem.
They perform a biopsy on the single Sentinel node, right then and there during the surgery, to see if it is cancerous. If it is, they go back and grab the rest of the lymph nodes from around the armpit, and send them for further biopsy as well.
This is better than the old way of doing it; they used to just grab all the axillary lymph nodes in the area and send them all for biopsies, just in case. But losing a clump of lymph nodes can put a strain on the rest of your lymph system and can cause further life-long complications, like lymphedema.
So, I am thankful for the research that has proven if breast cancer has spread, it always goes to the Sentinel node first. If that node is clean, there is no need to take out the others.
Except mine was cancerous. The cancer has begun its way out of my breast, away from the tumor, and has started its journey into the rest of my body.
Without the full results, I already know my “stage” has jumped from Stage 1 to at least Stage 2. My odds of living 10 years have dropped, to 85%.
- The cancer has spread, at least to the first lymph node outside of my left breast. Now, I have an 85% chance of living. 85% 85%
Breast Cancer: Invasive Ductal Carcinoma
1.4 cm (spoiler alert: we’ll later learn it is really over 11 cm large!)
Nottingham Tubule Formation Score = 3
On a score of 1 to 3, this measures how mean and nasty the cells are, 3 being worst. My cells are really gnarly and f’ed up. Not good news.
Nottingham Nuclear Pleomorphism Score = 2
Again on a score of 1 to 3, so this result, although I don’t fully understand what it means, is average. So, it really doesn’t indicate anything, right?
Nottingham Mitotic Count Score = 1
On a score of 1 to 3, measures how quickly the cells are dividing and reproducing, 1 being best/slowest. My cancer cells are nasty, but not dividing and reproducing very quickly. Good news here.
ER and PR Positive
This means the cancer is receptive to hormones so it might be able to be controlled w/ hormone treatment should I opt to go that route.
I also believe this is good.
Lymph Node Involvement
15 Lymph Nodes Removed, 10 of them cancerous.
Cancer has begun a journey outside of my breast and into the rest of my body. Now I can only hope it didn’t get past the lymph nodes and settled into my bones or lungs or blood or anything else I can’t “cut off”.
“No one’s ever received a chemo treatment then stood up out of the chair and fell over dead. You got this part. Keep going.”
I was told my hair would fall out after the second treatment. Trying on wigs made everything seem real, and inevitable. I can’t believe women wore these for fashion. They are terrible, from the 50 dollar ones up to the 500 dollar ones. Awful, itchy and terrible. I like my hair. I don’t want plastic hair.
OK so… The GOOD news is that today I “hit bottom” and now there’s nowhere to look but UP!
I had some amazing conversations tonight (after a total breakdown, and what my mom has told me was a “catharsis”) and now I am ready to do this.
Consider this my war cry as I head into the battle ahead of me.
- the process of releasing, and thereby providing relief from, strong or repressed emotions
- a purification or purgation that brings about spiritual renewal or release from tension
- elimination of a complex by bringing it to consciousness and affording it expression
synonyms: emotional release, relief, release;
Had a reaallly great day today! Giana’s birthday and we enjoyed it w/ the family and delicious amazing cakes baked by Ivy and Cara, had chemo and it wasn’t THAT bad (took some of the “scary” out), shared some wine with Scott and my friend Ann… and FINALLY got some GOOD news from the docs, on the most significant test yet – and well before I expected to hear it so no torturous waiting, either! AMEN!
The cancer has NOT spread beyond the lymph nodes, to any of my organs or bones. This stops my staging just short of being Stage 4. Wow. Close call.
Whoa. Chemo really sucks. Glad to be coming out of that fog and very much looking forward to the next 10 days of feeling better before we do it again. Special thanks to my in-laws for the evening out tonight. Even though I looked like I just got out of bed, it was really really nice to be in public again. On a date even, with a nice meal out. I’ve missed that!
Eternal thanks to Ann who came over and did the dirty work, and showed this tomboy how to tie a ribbon in my hair. Or should I say wig.
Basically, we first tied up all of my hair into little ponytails all over my head. I felt like if we just pulled it into one large ponytail we would lose some of the length and I wanted to be able to send as much and as long of pieces as I could to the charity.
After the ponytails were in place Ann went through and cut them all off one by one. We secured them in a plastic bag. We left my bangs in place since they were too short to send.
So there it is. Overall not terrible I suppose. But you’re not gonna see me bald!
The full photo journal of the night is below.
At Albemarle Hospital for a MUGA scan (tests heart function) and was just accidentally given a bone density scan instead. Only on the way back to the waiting room did I question it and the tech realized she gave me the wrong test! Now I am about to have the MUGA scan. Are you kidding me?! Is THIS why several friends have urged me to go to Duke or anywhere not local for this stuff? Holy cow!!!!
Thanks for all the comments, y’all. I know in general I am getting good health care here on the beach. Love my surgeon, love my oncologist. Not thrilled with Albemarle Hospital though. The error WAS the technicians fault, not clerical. I even called that day and asked what I needed to do to prepare, etc., and spoke with the same lady. I didn’t tell her my name on the phone but when I said I was coming in for the MUGA scan – she asked “is this Ms Lawrence?” so I can only assume I was the only one for the day. Then after the bone density scan, I was walking back to the waiting room and was asking her all sorts of questions – based on what I had read the test would be like online. Like “shouldn’t I have had to have an IV with the radioactive stuff in it? wasn’t this supposed to last an hour or more?” to which she replies – “Nope, this is it. They may bring you back in for a MUGA scan though….” *DOH!* And then I said “Thats what I’m here for today.” and then she goes all “oh my god oh my god oh my god! I’m so sorry! “I’ve been giving bone density scans all day! I just gave you the wrong test!” *DOH* Back to the nuclear-x-ray room.
So! All that said and done….. it was not an invasive procedure. You are right, Cindy and Laurin – would have SUCKED to lose a kidney lol. But they didn’t do anything painful. In fact, I’m more disgruntled that she had to stick me twice before she got the IV in. The bone density test was just like a long xray. And… it WAS Monday. But you know, in a hospital, you kinda want to feel like the people caring for you don’t make mistakes cause it’s Monday.
Anyway, we got through it alright, and on to the next test or whatever is in store next.
And…. the tech told me I couldn’t have the results since a doctor didn’t order the test… but then I guess she felt guilty because she brought me the full results. Also said she is going to keep the files on hand so if a doctor does order the test, she can just give us the results. And….
drumroll please …. my bones are fine.
In fact, if it weren’t for this cancer BS, I’d be really very, very healthy!
I can breathe in, and I can breathe out. And that’s all I need to do right now, so it’s all good. It’ll be sleep, eat, and work (in that order) for a while and that’s just fine … and temporary!
Thanks for the well wishes everybody while I went through chemo today.
Today is chemo day. If you find yourself with a spare moment and need a thought to fill it with … … please think the following, “Susan is getting healthy today, washing that cancer right out of her body. One step closer to being healed.”
And I say it one more time, ladies… take a moment today to schedule your mammogram!
OK chemo… You can knock me down and I’ll just get back up and do it again… Let’s go!!!
Yesterday: worst chemo ever. Today, right now actually, blood transfusion at OBX hospital. Yuk.
Well here I am at chemo. I can’t believe I’m doing this again. Everything in my body is telling me to get up and run out the door yet I sit here and let them pump all these chemicals into me that I know are going to just train wreck my body. Oh yeah, and hopefully save my life.
Session 1 was much harder on me than numbers 2-4 of the A/C. I assume because it was such a shock to my system and that 2-4 were a little easier on me because I was more used to it and had some residually in my system after the first one.
#5 (last time) was the first of the second type. It was a doozy, too, so I’m hoping the same principle applies and that 6-8 are a little easier. But you never can tell.
One session I also had a common cold – which was horrible and involved an overnight ER visit! One session I slept the whole thing through, which was nice. And last session I had a reaction during treatment, had to stay MUCH longer than I’d hoped – ALL DAY ’til 530 pm – and ended up needing a blood transfusion on Friday, which also kept me all day ’til dinner at the hospital. It’s hard to tell.
I do know that my numbers are up some which is good. And that the doctors willing to adjust my meds to help me not have such a hard time this time. Chemotherapy kills your fast-reproducing cells, which includes the cancer cells, but also includes (among many others) the red and white blood cells and platelets produced in your bone marrow. That means you are super fatigued, dizzy/lightheaded, bleed easily and uncontrollably, and are immune-compromised (hence the terrible cold).
One thing they do to help with this is give me a follow up “booster” shot the day after which I’ll get tomorrow. It’s called Neulasta and it basically stimulates the bone marrow to make more platelets and red and white bold cells. The bad part is that it’s extremely painful to have that going on in your bones, especially in your joints.
Coupled with the Taxol which is also notoriously painful to the bones and joints, it was almost unbearable for me last time. It literally feels as though I’m getting stabbed in my bones in my lower back, hips and shoulders, a quick and acute pain that comes and goes in waves and basically causes me to writhe until it passes. It sucks. Chemo sucks.
Since I had a blood transfusion last time, my white and red blood cell counts are actually up! So the doc lowered my Neulasta shot dose from 6mg to 4mg. Woo hoo! Hopefully the pain is at least 30% less as well! I’ll let you know tomorrow when I find out. 🙂
Taxol also has some other side effects which have made it less fun than the A/C (Adriamycin/Cytoxan). For one, I am constantly breaking out in full body sweats. Then I’m freezing. My thermostats a wreck.
I also have gone 180 degrees in that with the A/C I had diarrhea for 8 weeks straight, I’m now dealing with excruciating constipation. Another internal system completely on the fritz. The good thing here is I can try to control this with diet.
Another good tidbit is that the nausea is not nearly as bad with the taxol as with the a/c. And so far my taste buds have been hanging strong. I love to enjoy good food and I’d be heartbroken if my palate was screwed up the way I hear others describe. If I couldn’t eat anything I would be so frustrated. But maybe I’d lose a few pounds. Instead I’m gaining weight which I actually hear is very common despite the stereotypes. I guess from eating comfort foods (like lots of plain noodles w butter and parmesan – yum!) and not exercising at all. I never thought I’d hear myself say this but I can’t wait to get back into the gym.
What else? Insomnia. Tingling hands and feet. My whole body’s skin will peel and shed in about 2 days. Headaches. Insomnia. Blurry vision. Exhaustion/fatigue like I’ve never known. Like I have to pause when I climb stairs. It burns out my muscles to lift my arms above my head. If I drop something I need someone else to pick it up. Headaches. Sweats.
But the bone pain is by far the worst.
Of course this is only on the bad week. After a week I’m getting back to normal. Still exhausted but everything else starts to get under control, and I am thankful for that.
I just want to say again how very very thankful I am to have a great group of friends and community in general who continue to prepare us meals, drive me to appointments and care for our children. And also just flood us with kind words and encouragement, week after week! It’s a long long haul and I couldn’t possibly do it without all of you. Thank you!! From my whole family, thank you!
Well looks like no chemo for me today. The meds are causing numbness in my hands and feet and the doctor told me today that’s permanent. So we’re switching up the meds from Taxol to Taxotere. Of course they don’t HAVE any of that here because they only bring what they need when they journey out to our little island each Thursday. So a trip to Elizabeth City tomorrow and I’ll be back on track!
Here I go again – but this time – it’s my LAST Chemotherapy treatment!!! Send up some thoughts and prayers for me one LAST time – let’s hope it’s been effective and that this cancer’s LONG GONE. It’s been a long hard fight. I don’t wish this on ANYONE.
At Outer Banks Hospital awaiting a PET scan which *will* tell me I am cancer free.
Drinking some nasty concoction and then getting a CT scan. Yuk! (the PET scan showed some areas of concern around my liver. Hopefully the CT scan will clear that up. But this drink is nasty!!! — at The Outer Banks Hospital.
CT Scan Results back – liver is fine!! Nothing to worry about with the liver! Hip Hip Hooray!
Sun’s not even up and we’re on our way to UNC Cancer Center for a 2nd (and 3rd 4th 5th and 6th!) opinion, to determine the remainder of my treatments. Seems locally, the onco-radiologist and the onco-surgeon docs both think they should go next, after the chemo is done. So my “Cancer Nurse Navigator” has suggested a trip to UNC. They have a “breast cancer clinic” where the patient gets there and gets settled into a exam room, and then all sorts of doctors come and go, with THEM rotating thru the rooms and ME staying put in one spot. It’s an amazing process and I am slotted to meet with a surgeon, a plastic surgeon, a radiologist, an oncologist, and more.. they will review my OBX doctor’s suggested course of action and weigh in with their suggestions.
I am so lucky to have this available to me!
So… Surgery tomorrow. Bloodwork lab and EKG today. Can’t believe it’s so soon. By the calendar it doesn’t seem soon. But saying “surgery tomorrow” … That FEELS soon!
I’m starting to really want this to be over.
Hooray! I ran today for the first time since December last year. Well, it was more of a walk/jog than a “run” but it’s the most I’ve done in a while. Sure picked a HOT DAY to do it!
This Just In: Radiation starts Monday. IMRT (the extra-fancy kind that should better protect my heart) was approved (after initial insurance denial). Hope I don’t grow a third eye or anything!
I’ve got my 6 month post-chemo check-up today. I can’t believe it’s been that long. 5 more days of radiation and one mega-surgery to go! I can see the light!
LAST DAY OF RADIATION! Wooo Hoooooo!! Almost done w/ this pain in the a$$ called Cancer!
I need some prayers, love and positive healing energy.
I found a lump under my arm last night. Saw docs today – it’s not good – needs to come out, now. Docs say it’s likely a cancer recurrence but we won’t know till Tuesday.
I’m about to get rolled back to surgery and I’m scared. I don’t want to do chemo again!!!
I am thankful though that they could do a surgery so quickly here on the OBX. Literally the same day I walk in, scared, with a lump. And the surgeon asks “Have you eaten yet today?” No, I’m far too nervous to eat. “Great, drive around back and we will get you on the operation table.” What? Right now? “Is that ok?” Uhhh, yeah. Perfect. I’ll meet you around back.
Love being in a small town. <3
I am so relieved but it was a definite eye-opener for the whole family. I think I thought “mission accomplished” a little prematurely. My prayers continue for everyone else suffering with this. I got lucky – for now!
At Albemarle Hospital. Stitches came out today. No cancer! Time to get things back to normal!!!
At North Carolina Cancer Hospital in Chapel Hill. Pre-Op appointments w/ both surgeons today.
Am I lucky to have such a renowned facility available to me? Yes.
Do I wish it was not a 3-4 hour drive each way? Yes!
So very thankful my neighbors waking early to get my children on the school bus and family for being there to get them off and get them fed dinner and waiting for hugs when we got home.
Follow ups with local docs. gotta love the intestines graphics.
So very good news from the oncologist follow-up appointment today! I am officially 100% cancer-free! My “tumor markers” were down to a very low 18. (Not even entirely sure what that means – but doc says it’s a great number) So Hoooooraaaaay!!!! HOORAAAY!! ***H*_*O*_*O*_*R*_*A*_*Y*_*!*!*!***
Today, as I was laying, and crying, in debilitating pain for literally years after undergoing these “treatments”, there came an enlightenment. A zen-like understanding of who I am and where I was in the world. Of what I was doing to my body, and what I needed to do to make it stop.
Finally, I pulled the plug. I had to. I couldn’t do it any longer.
I had a tearful meeting with my family and let them know I was NOT giving up on life, but presently, I wasn’t living, either. I called my mother and my brother. We decided we’d all rather have 2-3 great years together than a lifetime of me on the couch in misery.
Throughout my journey, I’ve learned to do my research. So I continue that path. I’ll read up and find out exactly what I needed to do – to eat, drink, breathe and live – in order to beat this. I’d surround myself with friends from different backgrounds and find out what they know and how they could help. I’d research the diagnosis and the treatments, meet with doctors, and do whatever I could to beat it.
But I’d HAVE to start building myself up instead of continuing this path of breaking myself down. I HAVE to turn the tide now, while I still can. Today I start my new life.
You (probably don’t) know what that means! Cancer-free for six years!!! And I dont have to go back for another year. Wooo hooooo!!!
So, last Tuesday I go in and have my OT Angie (who I’ve seen on and off since the beginning, almost 8 years ago) take a look and discuss some possible plans.
We decide to try bandaging, to get my arm size down some, take some new measurements, and start fresh with some new exercises and therapies.
Here I am learning the new rules >>>
I can generally keep my lymphedema under control with a 30 minute self-MLD every morning, some mini-drains as needed during the week, and a biweekly appointment with the magical Dave Henderson – notorious lymph-taming & fascia-busting hero.
But with all the pain and other issues I’ve been having recently, a visit to the Outer Banks Hospital Outpatient Rehab center was in order.
Bandaging itself went well. I wore the bandaging home and was fine throughout the day.
By fine I mean I felt as though my entire arm from fingertips to armpit was stuck, lodged in an empty log.
One that weighs 50 pounds, and itches. =/
Sleeping at night was rough, having an itchy 50 pound log stuck around my arm and unable to bend my elbow, but I managed through the night.
I felt pretty good walking back into the OT office the next day, and thrilled to find out I’ve lost multiple centimeters of diameter across my arm. We took new measurements and I’m buying some fresh new sleeves!
I’m loving how light and compact and generally “good” my arm felt. So, my husband Scott & I ventured for a walk! I don’t know if it was the weight of the arm, plus the additional weight of all the bandaging, or the movement, or the heat… but 10 minutes into the walk my arm feels like it’s about to explode through the bandaging, like The Hulk shedding his regular man-sized clothes.
I grab hold of my swollen left arm with my right arm, and carried it home. I lay down in bed with some cool ice on my shoulder and try some manual lymph drainage around the bandage and some deep breathing just trying to stay cool, and carry on. This, too, shall pass.
A few hours later and I’m doing my recommended therapy “exercises” and stretch my arm over my head to stretch out my damaged left side. I feel a pinch or pull in my skin of my upper arm that feels like it’s been ripped open … it’s the only way I can describe it, just a little snag and then like an unzipping feeling. I expected to see blood.
Immediately I’m feeling my elbow and upper arm area begin to rush with heat and flush turn red and swell. The swelling soon became intense, like it was earlier when I was walking. I roll down the top of the bandaging to take a peek and saw that my skin was turning red below the bandaging. Red and bumpy and blistery, hot, and sore.
I started pulling the bandaging off and examine my arm. It didn’t stop swelling for quite some time – I had bumps and hives and scratch marks without having touched my arm. Parts of the skin was hardening, and parts blistering, and all of my arm was burning hot. So, yeah. 🙁
The burning sensation in my skin would not go away. As much as I hate medicine I caved and covered my arm in a Benadryl gel, which I use in emergencies on the hives that I experience since chemo. Sometimes the hives get pretty intense and so I coat them with the Benadryl gel which immediately stops the burn and itch.
Not this time. I resort to taking two Benadryl antihistamine tablets and calling it a night.
On Friday we decide to try again so after another treatment for the fascia pain in my ribs, we commence to another wrapping of my arm. For a while it is doing well: uncomfortable, inconvenient, but not too painful.
Until around 2 am, when I wake up to fire and brimstone in the bandaging. I just took off the bandage and set my arm free.
Immediately I noticed in the side of my elbow a series of creases – I must have had my elbow bent maybe while I was sleeping, causing some creases in the fold of my arm, and maybe cutting off circulation some.
Immediately after the bandages are off my skin just starts swelling and burning itching and you can see my veins struggling, you can see them through my skin and now a series of what look like pin pricks have run down my arm along a vein. They are sensitive to the touch, and sensitive if I twist my arm or pull my skin.
For now, I’m keeping the bandages rolled up neat and tidy. I’ll be back at OT this week, and see how we go from here.
Hopefully, this is the end of my lymphedema bandaging experience.
- With additional test results, my prognosis changes again, for the worse. Now, I have a 60% chance of living 10 years past diagnosis. That will be December 2020. 60% 60%