This is part 2 in telling my story of post-op recovery after a breast cancer scare and subsequent surgery. If you missed it, get part 1 here.
Day 10 Post-Op Recovery
Today is hard. I want to cry but it just makes the new incision hurt.
Glennon Doyle’s famous quote comes to mind to help me cope: “We can do hard things.”
I had to have a drain (catheter) put in. The initial aspiration was SUPER helpful, but the seroma filled again in less than 24 hours – and worse than before.
I also thought about redoing this video so I DON’T break down – but then I’d be giving in to my ego. And I believe Brene’ Brown when she says that courage requires vulnerability.
So I let myself get emotional, because let’s face it, sometimes our recovery doesn’t go as planned. I have made peace with that. Here’s what I’ve learned:
- I must take a step back to move forward. This is HARD WORK. We want to think ALL our progress can be made by simply moving forward or leaning in or trying harder, which isn’t true.
- I am *trying* to use pain as my teacher. Even as I type, which is HARD because the drain stings & burns, and when I move too much it can feel like a knife stab.
- Am I worried about not being able to work? Heck yes. I am self-employed. During a pandemic. Am I going to let that worry dominate my emotional state? Heck NO. I – and all the women out there going through this – are STRONGER than a setback.
- NOT MOVING MAKES PAIN WORSE. SO – I’m being creative with how I am able to sleep and get through my day. The tiniest movement hurts. The tiniest movement causes the drain incision area to bleed. SO – I’m being creative with physical therapy via doing isometrics, neck and shoulder massage, gentle neck self joint mobilizations…even simple shoulder rolls are difficult now with a drain stitched into your armpit. But I’m going to persevere.
Finally know that:
💕It’s OKAY to be upset – what IS NOT OKAY is staying in that dark place alone.
💕Reach out to me or other fellow women going through this. We are here for you!
💕Remember this is temporary. While you are forced into doing LESS because of this very uncomfortable drain – there are STILL things you can do to aid recovery.
💕This uncomfortable setback is a blip on the radar. I’m *still* going to remain positive and let this setback teach me MORE about resilience, patience, and giving myself grace.
Day 12 Post Op Recovery
My drain stopped working. Ugh. So ladies…
- If you notice ANY increase in swelling, don’t ignore it.
- If you notice ANY increase in pain, don’t ignore it.
Once the drain was fixed, which increased in pain for 24 hours prior, nearly 100 cc’s of fluid drained in just a few minutes. No wonder it hurt!
How did I know swelling was increasing?
- Take photos! I have documented the entire healing process because the incisions are in my armpit area – and I cannot easily see them. I get help taking photos – and then compare. I can easily see the difference between a full vs. drained seroma.
- Palpate! A seroma feels like touching a waterbed. It isn’t firm, red, or painful to touch.
- Know the difference between a seroma and a possible infection. An infection will streak red marks that move out from the wound/incision & can be accompanied by pain and fever.
There are lessons to be learned and re-learned in times like these. Through ALL OF THIS PROCESS – I’m learning to give myself grace. Again, and again. You know what I look forward to MOST?
Being able to:
- Getting dressed again. In real clothes. On my own.
- Move freely again. I long for it. I crave it like a person can crave candy or carbs, lol.
- Take a deep breath without pain.
- Lean on my left arm.
- Sleep on my left side, or in any position at all!
- Getting back to work and life. Everything has come to a screeching halt.
- And MOST OF ALL – DE-DRAIN day – the day the drain comes out – my D Day – will be the BEST. 👏 DAY 👏 EVER 👏
Can I get an AMEN from anyone who has gone through ANY situation where you’ve been immobilized due to surgery, pain, injury or all of the above????
What I’m doing today:
- Being quiet, mindful, and reflective.
- Celebrating the little wins, like getting dressed with less pain.
- Looking past the household and work chaos that naturally happens when “Mom” can’t be on duty and “Ginger” isn’t able to work.
- And this one: Monitoring this drain to make sure it doesn’t stop again!
These things are important to push through this in a positive way!
Day 15 Post Op Recovery
Turns out, the drain has gotten clogged again. And again. Twice that required doctor visits and four times that I was able to get help at home to unclog.
Ladies, don’t be alarmed, but know that every time the drain stops working, you may experience an increase in sensitivity and pain.
So to be proactive:
- Check your drain first thing in the morning. Mine tends to clog up overnight – with a lot of cloudy, bloody, stringy, and yes, gross, drainage. That stuff occludes the drain and make the fluid back up – which could make the seroma GROW in size and discomfort.
- Check your drain multiple times a day. Make sure there are no bloody or cloudy/tissue formations in the drain. If, so you may need to learn how to strip the drain.
- Check for seroma “spread.” Mine has spread into the breast duct, and when it fills, it feels like when you are a breastfeeding mom and your breasts are engorged with milk. Not comfortable.
- Be vigilant about getting enough rest, which includes sleep.
- Add a Jovi-Pak or similar compression device inside a compressive tank if you can tolerate it. It is sensitive to wear it because I have pain (deep aches, sharp incisional type pain) and nerve pain (stinging, burning, numbness, tingling), but it helps keep swelling down, which ultimately helps with the pain.
Getting Better Sleep
Sleep is a BIG issue, because you can only sleep on 1 side or your back. Turns out, I am a left sided sleeper mostly, so I haven’t been able to really readjust and get comfortable since surgery – 15 days ago.
Here are a few things I use for better sleep right now (see tips in comments):
- You may need to sleep elevated or propped up, or in a recliner, the first week or so.
- After that, it’s worth investing in a physical therapy wedge or creating a wider than usual Yoga Couch. See below for how to fold it!
- I cannot sleep propped up all night, so I usually shimmy down flat during the night and do 1 of 2 things:
- Sleep on my unaffected side with a pillow between the knees, a pillow between the “girls” to avoid letting the affected area hang or sag, and a bigger pillow to keep my left arm from touching my left side (which hurts when I do).
- Sleep on my back with my left shoulder and arm supported by a blanket (or the bottom of a wide Yoga Couch).
- 1-2 mg of melatonin 30 minutes to 1 hour before bed – you have to clear this with your physician before trying it, especially if you are on pain medications or meds for sleep.
- Magnesium – you need to discuss which type of magnesium will work best. But – magnesium helps with sleep and in recent research has shown promise with helping to reduce pain. So it’s a win-win! I use a chelated magnesium glycinate in powder form, and prepare a glass to drink about 1 hour before bed.
- Keep a dark, quiet room.
- Keep the air clean and cool. I use a room ionizer (air cleaner) that emits a soft noise to drown out outside sound. I also turn the A/C down to 69 to sleep at night. A higher core temperature prevents sleep.
- Keep your feet and hands warm just before bed, and your core cooler.
- Use blue-blocking glasses to block blue light at night if you must work late or be on your phone/watch TV.
- Otherwise, power down devices by 8 pm and be in bed by 10 pm.
Day 17 Post Op Recovery
Goodness gracious, what a weekend. With my surgeon’s approval, I removed the drain 2 days ago (I am able to do that as a PT). Turns out I was right – the drain was clogged internally. There was no way it was going to be corrected without removing it.
- Manual draining every 2-3 hours.
- Right now, it’s successful, but I can see the incision closing – my body wants so badly to heal, and it’s doing so from the inside out.
What are the positives?
- The manual drain is uncomfortable, but it is FAR less painful than hauling a drain and catheter around everywhere.
- Less neck, shoulder, and back pain. I can move more freely, but am still being careful because the seroma is filling regularly. Still.
- Better sleep. Without the catheter in, I can move at night and lay flat without pain.
What are the negatives?
- I may have to get another drain put in. I do not look forward to this, especially now that it’s going on 3 weeks post-op.
- The incision site will eventually close. That will be bad because it could force a new drain install.
- Soreness and discomfort from all the manual drainage work.
Overall, I would say I’m trending in the right direction, but I really have tremendous empathy for all women out there who also have stubborn seromas. It is NOT an easy path forward.
BUT – as always, I’m staying positive, staying busy, and doing these #lifestylemedicine #integrativemedicine things to help me heal:
- Get a minimum of 7 and a maximum of 9 hours of sleep nightly. Refer back to my previous post on how to get better sleep.
- Manage stressors. Mindfulness, meditation, deep breathing are what I’m using.
- Stay active even if I can’t formally “exercise.” This means short walks and doing household tasks that don’t aggravate the arm.
- Eat healthy – lots of plants, some protein, lots of water, and antioxidants.
- Avoid environmental toxins. Artificial coloring, flavoring, scented cleaners or detergents, microwaving plastics, use of lawn chemicals or pesticides are all no-no’s in our household. We also shop organic and non GMO on the dirtiest foods with the most known pesticide residue on/in them. I have actually had food sensitivity testing done and several common food additives create an inflammatory response in my body. I definitely don’t want that – so make sure to avoid these substances when you can if you think you may be sensitive to them.
I’m taking a break from the “regularly scheduled program” of surgical updates and posts about yoga, physical therapy, lifestyle medicine, and integrative medicine to offer you this little meditation in song. 💜
🎶When I’m down, I sing. When I’m sad, I sing. When I’m glad, I sing. #singingmakeseverythingbetter
These past few weeks have been super hard. And life was already difficult with COVID19 and the pandemic raging in our country.
So someone asked me to do a little meditation on how I had been getting through it all – as a self-employed mom of 3, as an entrepreneur, as a sudden and unwanted homeschooler of my 3 boys, and now trying to recovery from my “XL lumpectomy.”
Ok, here’s the Day 17 update!
Day 18 Post Op Recovery
It is Day 18 and still the incision has closed. Normally this would be GREAT news. But not in the case of seroma you are trying to manually drain. So, back to the surgeon I go today – to get a second drain.
New drain, new location, same situation.
What’s the take home message?
- The last thing I want is another drain. BUT, if I don’t, the risk of complications go UP! Infection, seroma spread, and a nasty, hardened, aesthetic nightmare and uncomfortable area in and around the scar.
- I’ll take a second drain over all those bad things.
- At day 18, I cannot afford to take another day off from work as a self-employed mom of 3. Now I have to play a delicate game of doing enough to do my job well, but not enough to endanger my healing.
- If we had better HEALTHCARE policy in the US – we wouldn’t have to choose between taking care of our health and returning to work so you can provide for your family.
What can I use help with right now?
💕Emotional support. We all know your support system means a LOT when it comes to healing. I could use some words of support right now.
💕Prayers for to help me get back to work.
💕Prayers for TOTAL healing. At 18 days out, I would have never imagined I’d still be trying to heal.
💕Share this video with anyone you know struggling with this issue.
Day 25 Post Op Recovery
The seroma isn’t budging, but it’s slightly smaller. So there’s bad and good news.
This video is ALL about learning to deal with what I cannot change, while praying hard that it WILL get better.
I have to admit sometimes my hope isn’t as strong as I want it to be.
Despair is not uncommon, I tell myself, in situations like this. So I want to encourage all of you out there going through this – don’t be ashamed of feeling down, fearful, or hopeless. It’s part of the grief process.
My biggest fears now are lymphedema issues that will lead to permanent disfigurement or impairment, and pain problems that happen as a result.
What I don’t do:
🚫Say “it could be worse or other people have it worse,” – that is TOXIC POSITIVITY.
🚫I try never to say that to anyone, and I certainly am not going to have it be a part of my self-talk.
What I do:
✅Don’t beat yourself up. If you are out there and struggling with a stubborn seroma, I hear you. I feel you. I understand you.
✅Don’t blame yourself. It’s not fair BUT it’s not your fault. You didn’t do anything wrong. Your surgeon didn’t do anything wrong.
✅Remind myself that this happening is just plan and simple – BAD LUCK.
✅Life isn’t fair – and my God, certainly 2020 has been fair to NO ONE.
✅Remind myself – I am just feeling low, but I know take comfort in knowing I am not alone. Trust that this will end.
✅Have faith that I will be better. And if I am not, this present struggle will hopefully build a new kind of resilience in me – to accept those things which I cannot change.
✅Remind myself – I work very hard as a woman, mother, and physical therapist to take care of myself – for my sake, for my children’s sake, for my husband’s sake. So this surgery complication is a big slap in the face – it tells me you can do all the right things for your health – and still get saddled with freak diagnoses.
Extraordinary Diagnoses: Yep, that’s me!
☝️This isn’t actually the first time I’ve been saddled with crazy medical diagnoses. Did you know I also had TWO appendectomies? Yes, two.
☝️I also had a birth injury that led to my hip needing to be reconstructed.
☝️I also had my gall bladder removed because adhesions from the prior abdominal surgeries became so invasive they choked out my gall bladder, until it had less than 10% functioning.
💜I’m no stranger to adversity. But you know what – in every case – I tried to use the experience to become a better physical therapist and a stronger woman.
💜This will not kill me either. I will emerge stronger and wiser – and so can you.
💜Because EMPOWERED WOMEN EMPOWER WOMEN. 🙂
PS In this video I am going to share what the drain looks like.
Day 31 – What’s my personal experience so far with post-op recovery?
I started physical therapy with a certified lymphedema therapist (CLT) today! Yay! Looking forward to getting started on manual lymphatic drainage (MLD) and sooo much more!
Learn more and find a therapist here OT and PT are really necessary when or if you have an extended complication as I have. And even when you don’t, oncology-based PT or OT is still necessary to address scarring and prevent long-term shoulder issues.
Here’s what I’ve learned:
✅ Get assistance from an OT on basic tasks like:
☝️How to get dressed on your own. i.e. put your affected arm in the shirt FIRST but to take it off, take your affected arm out LAST.
☝️Hair washing is another difficult task – my husband has no hair – so washing hair for him is a totally foreign concept. Fortunately, my hairdresser was able to fit me into her schedule to get a quick wash and set. And I have a pixie cut – so “fixing my hair” is a 2 minute thing. For women with long hair – I don’t know how you’ll get through it without the help of someone else. You’ll need to allow far more time for personal hygiene tasks.
✅ Don’t ignore your affected arm. Watch for signs of edema, infection, or swelling.
☝️Also work on lower arm range of motion at the wrist and elbow. Doing this can also help make it easier to eat (I’m left handed) and do other basic tasks, like even getting the mail out of the mailbox.
☝️Scar tissue will eventually need to be addressed. Discuss this with your therapist and surgeon first though – you don’t want to exacerbate a seroma.
Now that I *think* I’ve started to round the final corner of healing – I have a LOT of work ahead of me. I will need post-op recovery physical therapy for:
- Manual lymphatic drainage
- Optimizing compression – which will probably need some special garments and tools the PT can point me toward
- My affected shoulder
- The multiple scars I have from surgery and drains – the surgical incision has already badly scarred down to my pectorals major due to movement restrictions from the seroma.
- All the soft tissue in the entire area – the mass went into my chest and back muscles, which was unexpected. As a result the tissue is restricted and angry.
- The scapula. It’s totally stuck down and nonfunctional, which severely limits my shoulder range of motion and puts me at increased risk for a rotator cuff injury or shoulder impingement
- Neck and head area – not being able to move my left arm has created a lot of new restrictions and pain, which can include tension headaches.
- PLUS – I will need to slowly restart my regular fitness routine, which includes walking (I took my first longer walks this weekend, about 45 minutes each at a slower pace than usual) and yoga using Medical Therapeutic Yoga for strength, mobility, and mindfulness.
So you can see there’s LOTS to work on AFTER the seroma heals.
Don’t Forgets for Post-Op Recovery!
I also just had to start on a course of antibiotics, so please don’t ignore signs of infection, which include redness, swelling, red streaking away from the wound, temperature is warm to touch, and drainage that is yellow or green.
On Drug Allergies
I was allergic to the antibiotic (oh my that was painful). I haven’t had a drug reaction like that in 24 years. Wow. I didn’t need that on top of everything else. But, we persist, right? We can do hard things (thanks for the inspiration Glennon Doyle!).
What Gets Me Through
One last thing, I can’t get through this tough time without yoga and mindfulness – chiefly meditation, deep breathing, and restorative medical therapeutic yoga. It helped a great deal with the pain, sadness, worry, and overall overwhelm. Also, don’t forget that deep breathing can really help with your MLD process!
That, combined with gentle walks out in nature and plenty of music were a true lifesaver.
More shots from the journey
Coming Soon – Part 3: Updates and tips on getting the most from your post-op recovery & physical therapy
**These are suggestions for educational purposes only and do not constitute physical therapy. You should get the approval of your surgeon before doing this or any movement or exercise program after surgery.**
Thanks to those who have supported me
I want to give a shout out to Robbie Burney, PT, PYT, CLT, Susannah Haarmann, PT, CLT, Melinda Halford, PT, CLT, MFA, MDT and ALL the wonderful therapists I have locally helping me through this tough time. I also want to give a shout out today to the amazing Ruth Goldeen, OTR/L, MEd, PYT. She is on faculty at Living Well Institute and has shared her wisdom with me on OT for lumpectomy, mastectomy, and my procedure, an excisional biopsy (which is also quite often called a lumpectomy). Finally, I am deeply grateful to my amazing and wonderful surgeon.