When I was diagnosed with Stage III breast cancer just a few short weeks after my 50th birthday, I wondered if I would make it to 60. I knew so little about breast cancer and that diagnosis (along with the facing surgery, chemo, radiation, and more) scared the bejeezus out of me. I was not (and am not) ready to depart this world, but I didn’t know what the future would bring.
I stand here before you now, having reached my 60th birthday and breathing a sigh of relief. This is a big deal to me, especially after this year’s earlier scare and surgery! I made it! It’s been a crazy, challenging, yet wonderful 10 years. But I made it.
I feel great and am fully recovered from my February surgery. That lingering cough is all but gone. I am back to walking a few miles every day. For the most part, I have had no big impacts from that loss of a piece of my lung. Big hills and lots of stairs…? I miss it then!
I’m trying to enjoy every day and I most certainly appreciate every day. Feeling blessed.
It’s been just about one month since I had my surgery and recovery has been going slowly, but surely. Some days are better than others in terms of energy levels, and I continue to manage through my annoying cough, incisions and stitches. I really can NOT complain, though, all things considered.
The big open issue was related to the pathology report. The actual report showed up in my portal on March 12th. I read it, to the best of my abilities, and thought maybe I was in the clear. There were several mentions of “no tumor seen” and “no morphologic or immunophenotypic evidence”. But there were also whole paragraphs of medical/scientific jargon that made me wonder if my interpretation was correct.
Since March 12th was a Saturday, I waited until Monday (3/14) to reach out to my surgeon’s office. Unfortunately, he was on vacation that week and I was advised that I needed to wait until I saw him in person on 3/23 (yesterday). So wait, I did, with anticipation of some good news.
I am happy to report that my surgeon did, indeed, confirm that there was no cancer found anywhere in my lung, in the nodules, or in my lymph nodes! What a relief, and what a reason to celebrate, for sure!
Thank you to all of you who prayed, sent good vibes, and otherwise supported me during this time! Whew!
So the natural follow up question is: If not cancer, what WERE these growing nodules?
And that’s a great question with no real answer. The surgeon indicated that chemo can “do weird things”, but as I’m almost 10 years out from my chemo, that seemed an unlikely answer. But who knows? I’m just going to be happy that Spot and Smudge, and every other nodule, lymph nodes and tissues samples, are NOT cancer.
The pathology report indicated the “Possibility of underlying connective tissue or autoimmune disorders should be ruled out” as, perhaps, a reason for the suspicious nodules. However, considering I have “zero symptoms” of either, he thought it was best that they just “leave me alone” for a while. I’m good with that.
The next question: Do I regret going through with the surgery? Nope. Given my history, the risk was too high that it was cancer and I didn’t want to take that risk. I know I’ll be back to my normal self soon, and I’m not feeling any life-changing limitations to my lung capacity or anything else. My adage is always “better safe than sorry”. Having the surgery was the most prudent / conservative decision I could make.
The other great part of the visit yesterday was getting my stitches out! Yay!
In terms of next steps: I do not need to go back to see him. I will just continue to follow up with my regular doctors. He would like a repeat CT scan in about six months for a new baseline.
As for the cough, the surgeon indicated that it was not unusual to have a chronic cough after a surgery like this. The nerves get aggravated with the things they stick down your throat and it takes a while for all that to settle down. I told him I had tried Mucinex, Claritin, Pepcid (acid reflux can cause a cough), etc., and he said there was no harm in trying those things; whatever helps. They did also prescribe an inhaler in case it was an “asthmatic-type response”. So I guess I’ll try that, too.
David and I celebrated the great news with a lovely lunch at The Cheesecake Factory, including a celebratory glass of wine. Cheers! Hallelujah!
Thanks again to all of you for your love and support!
As my five new incisions heal and stitches dissolve, I can’t help but envision myself as a bit like Sally from The Nightmare Before Christmas. Lose a body part, stitch it all back together.
The incisions are healing nicely, but with healing comes itching and tightening and a bit of nerve pain. Occasionally, I feel like I’m being tased in my rib cage (or as I imagine tasing to feel like…) and those nerve pains are totally unpredictable.
The incision on my back is the only one with “real stitches” that one get removed until my appointment later in the month. For now, they stick out through my clothing and look like I have a spider on my back.
Weirdly, they are blue stitches and all my photos look like I drew them in with a ball point pen!
Hey, whatever it takes to hold us all together, right?
It’s hard to believe it’s only been two weeks since my surgery! It definitely feels much longer than that.
I continue to focus on my healing, resting quite a bit over the weekend. I was tired, which is not unusual when you consider all the healing that is happening on the inside: lung, muscles, ribs, cartilage… Just because those five little incisions are healing, doesn’t mean everything is at the same pace.
My biggest complaint at this point is the coughing. After a lung surgery, coughing is good; it helps get all the gunk out and reduces your risk of pneumonia. In fact, post surgery, you are encouraged to cough (certainly a challenge with a chest tube).
But you know how they say too much of a good thing can be a bad thing…
My coughing isn’t persistent and it isn’t always terrible. But it is annoying. It rarely produces anything; pretty much it’s just a dry cough. Some days are worse than others and it hasn’t really impacted my sleep. But did I mention it’s annoying…? I can generally keep it under control with cough drops or a beverage (but not always). Sometimes, I feel like I’m going to cough up my lung. It can make speaking challenging at times, and my chest muscles are getting sore. I’ve got to hold my rib cage as I’m coughing to minimize discomfort to some of my incisions.
In doing some research, I found that some possible causes of long-term “CAP” (Coughing After Pulmonary resection) include injury of the vagus nerve, GERD, bronchial scarring, and thoracic anesthesia. I’m not saying that any of my coughing is related to this, but it was interesting to see that this is not an uncommon phenomenon and how many things can go wrong (as in most surgeries).
Per Science Direct, “persistent CAP is defined as the duration of dry cough no less than 2 weeks after pulmonary resection, no abnormalities in chest X-ray, eliminating postnasal drop syndrome, bronchial asthma, and oral angiotensin-converting enzyme inhibitors.” While I have no idea what that last one is, I do wonder if part of this isn’t related to postnasal drip. I think I’ll try some Claritin or something for a bit to see if that helps. If it does, then we’re good. If it doesn’t, then I’ll definitely raise it at my surgical follow up.
As I mentioned, I got permission to get back on the treadmill, and so today, I did just that. I started at a slower speed and did a shorter distance than normal, so as not to overdo it. I was also a good girl and wore my emergency fall thingy that turns the power off if I fall. I usually throw all caution to the wind with that thing, but given my lower-than-usual pulse and blood pressure, I thought it was prudent to follow the safety protocols.
One of the things I love about walking on my treadmill is my ability to binge-watch the shows that *I* want to watch. David and I have very different tastes in television shows. While I will happily (ok, maybe not happily, but perhaps willingly) watch the biography of Abraham Lincoln, or Jurassic Park for the 800% time, or even The Office (which I don’t love), returning the favor does not always happen. (I’m not saying it never happens…) So I just find treadmill time the best time to binge the shows that I love: Killing Eve is back on; Marvelous Mrs. Maisel returned a few weeks ago; This Is Us final season…
I got David a subscription to Masterclass for Christmas, so I am also trying to get through some of the classes. Presently, it’s Chef Thomas Keller and cooking techniques for me. Annie Leibovitz and photography for him. 🙂
But my latest binge choice? Mary McCartney’s “Serve It Up”. I saw an interview with her before the holidays and she was delightful. And, as a vegetarian, I was intrigued. But her show is on Discovery+, one of the few streaming services we don’t have. But, as luck would have it, David got an offer for a free 3-month subscription to Discovery+, so yay! I am now watching multiple episodes a day.
I want to be Mary McCartney when I grow up! She is lovely, her recipes are easy, she’s thin & healthy, she knows everyone, her dad is Sir Paul, and she’s got a British accent! What’s not to love? If you have Discovery+, definitely check it out. If you don’t and are looking for some yummy vegetarian recipes, you can find them on the Food Network website. She does use “a lot” of olive oil, but again, she’s thin and healthy, so we’ll forgive her for that and modify where it makes sense.
Quick updates:
Steri-strips are all gone.
I learned that the stitches in my back won’t be removed until my appointment at the end of March.
Slept great last night, and in my own bed. Goodbye, couch!
Almost all my tape glue is gone.
Started weaning some of my meds today, and done with the antibiotic, so my tummy is happier.
I am feeling pretty good and have started weaning from my meds early! Yay! (Yes, with permission from my doctors). My surgeon gave me permission to start weaning the Gabapentin, since my pain is really not bad. It only hurts when I cough or move wrong. My family doctor gave the green light to start weaning from the beta blocker, since my heart rate is now a bit on the lower side. We need to find that balance, so let’s wean off and see how things go.
A week out from my surgery, I am really grateful for how good I feel. I did also get permission to start using the treadmill again, so I’m excited about that. So limited pain, permission to exercise, sleeping well, healing nicely, making progress on my spirometer, and moving about freely. I am still sleeping on the couch because of the cough (normal to clear out the lungs) and not wanting to wake David up.
I am really grateful, particularly, for all the love and support sent my way. Calls, text, Facebook messages, prayers, cards… so many of you have reached out to offer well wishes and ask if there is anything you can do to help. Flowers, gift bags, and food have all been delivered this past week! We are eating well (lasagna, homemade gnocchi, brownies, and more!)!
I’m relaxing in my comfy PJ’s and comfy socks, wrapped in my comfy blankets, having a hot cup of tea, feeling quite pampered by all my friends. I use my pretty pink pillow to help when coughing, and my hot/cold pads to help with those twinges of pain in my back. What more could a girl ask for?! (I AM looking forward to partaking in the limoncello gift in the freezer…!)
I. Am. Grateful. To all of you who have supported us in so many ways!
I do have to call our a particularly fun and thoughtful gift, given to me by a friend her two small children. Always a great mom who tries to teach her kids compassion, Chris had her children help create my gift bag. Wanting to fill it all with candy, Chris reminded them that I healing from surgery and tried to eat healthy. As so, I got a great bunch of gifts: clementines, Easter garland, a coloring book and pencils, fruit cocktail, a mug (“be loved”), handmade cards, and more. There was even a story with this gift:
Chris’ son explained that the bad cells in my body were like weeds, and those weeds were going to die off into the ground, and wildflowers — healthy cells — would grow in it’s place. Pretty wise for a 6 year old, wouldn’t you say? From your lips to God’s ears!
There are so many little, random musings and pieces of info I wanted to share, I thought I’d throw them all together in this tidbits post!
My surgery date was “Two’s Day”, 2/22/22. While at first, I thought this was a fabulous day for a surgery, I quickly became superstitious! I’m a believer in numerology and all that good stuff, so 2/22/22 seemed lucky (and I guess it was). But SO many people made comments about what a lucky date it was that I started feeling like we were jinxing things, so I stopped telling people!
There are few things as heavenly as that first shower when you get home from the hospital!
I wasn’t able to take a shower in the hospital, but one of my nurses suggested a “shampoo cap”. Intrigued and feeling slightly gross, I signed right up for this! It is, indeed, a shower cap that gets microwaved to warm it up. It is placed on the patient’s head, after which the nurse does a head massage to shampoo your hair. Then the cap is removed, the hair is towel-dried, and voila! Clean hair. What will they think of next?
Meals were ordered over the phone — no more circling your selections on paper. This was good and bad. Good because the food was somewhat made-to-order, so it was always warm when it arrived. Bad, because at 6:30 in the morning, you can NOT get through to them. Everyone is ordering breakfast at the same time. So I was on hold for 15 minutes (ok for me, but what about the elderly or the very sick?), and then I waited 1 1/2 hours for my breakfast. I’m thinking someone needs to look at staffing and throughput for those early hours! Or may I suggest an app…?
I was on a no-caffeine diet (see prior posts about heart rate), so no coffee or tea. I was able to sneak in a decaf coffee one morning, but when I tried to order decaf tea, that was a no. Also a surprising no-no… chocolate chip cookies! Once home I was still avoiding coffee, but finally emailed my care team for permission. I was approved to have coffee but advised not “to go crazy”.
Do you ever wonder what caused the random bruises on your body post-surgery? Some make total sense. The two puzzling me today are the bruises in the exact middle of my belly and on the inside of my wrist (no, not where the arterial blood draw was, nor even my two IVs). Just weird. Hmm.
Whenever I give up a body part, or part of one, I assume that I’m going to lose some weight. I mean, you are removing something from my body, and I’m giving up a few meals… that ought to count for something, right? Alas, this was not so. (At least I didn’t GAIN any weight, either.) Just so you know, the average pair of lungs weighs 2.2 pounds. So roughly, what they removed only weighed about 1/3 of a pound, so perhaps my expectations were unrealistic this go-round.
Bandage / tape glue is very hard to remove from your body. Three days of trying; much of it is still there!
I was surprised that ALL of my floor nurses were men. All very different personalities — Chris, Allen, Tim — but all equally compassionate, attentive, competent. Note: I am not implying that I didn’t think men could be awesome nurses. This was just the first time I ever had a male nurse, never mind ONLY male nurses 24/7, and it was kinda nice!
I’m not someone who has ever taken a lot of medications. Before my surgery, I took one prescription. One.
After my recurrence in 2019, I started taking a new aromatase inhibitor and that’s it. I do also take some vitamins (B12, D3, etc.) but only one Rx.
So imagine me coming home from the hospital with, count them, NINE prescriptions. A few I knew I would never take, but I humored them anyway. At Penn Presby, you stop at the pharmacy on your way out the door, as they want to ensure that you have all your meds when you get home. These 9 drugs cost me a whopping $36 and change, which actually surprised me.
I try to be a model patient and follow all my doctors’ instructions, so I did agree to get them all filled. I have an Excel spreadsheet with all the dates and times for taking them, and I use my i-Watch to set alarms to make sure I don’t forget. I mean, there are nine (well, six that I’m actually taking…) so the spreadsheet was the easiest way to keep track, and I do love an Excel spreadsheet!
Here are the 9, in order of cost (just for some interesting context):
Oxycodone for pain. $0.68 Nope, probably not ever going to take this one. And surprisingly, it’s the cheapest of all of them. Granted, it’s only for a few doses, but it seems like maybe opioids shouldn’t be this cheap… Just my opinion.
Senna-Time $1.00 This one is a stool softener. Since part of my lung was removed, there is now a hole/space in my abdomen, that my body will try to fill with whatever. Including intestines pushing up into the space. As such, they want to make sure you are moving your bowels to reduce that likelihood of that happening. I have been taking this but you do reach a point where it’s problematic to keep taking it, if you get my drift, so I took a break on this one!
Metoprolol $1.13 This is a beta blocker to lower my blood pressure. Historically, my blood pressure runs on the healthy lower end, so it’s weird to be taking this one. However, one of the risks of this type of surgery is the onset of atrial fibrillation (a fib). Sometimes it is temporary; sometimes it is permanent. So the doctors are very cautious about watching blood pressure and heart rate and all that good stuff. I’m not sure how long I need to be on this one. I am to consult with my family doctor about duration, but for now, it’s at least two weeks, to be safe.
Cyclobenzaprine $1.51 This one is a muscle relaxant (Flexeril) and was provided as a pain option for me outside of the oxy. Not taking this one either.
Amoxicillin $3.00 Obviously, we all know this one is an antibiotic. Just precautionary, as a lung infection would be bad news. This particular antibiotic was selected “based on the flora in my lung”.
Acetaminophen $3.00 Tylenol. My big pain med! 🙂 Go, me!
Prochlorperazine $3.90 This one is for nausea, which I would really only need if I took the Oxy. And actually, I felt a little nauseous the other day from too many stinking pills in my belly, but I settled it by chewing a handful of papaya enzymes. I will always look for a natural alternative where I can.
Gabapentin $5.23 Also part of my pain management regiment. I’m not really sure how much it’s helping me, but I’ll continue this one, since it doesn’t make me sick. And I’ll wean off, as instructed.
Mucinex $16.69 Does it make sense to ANYone that Mucinex should cost 3x more than the next most expensive drug I’m taking? Mucines $16+. Opioids <$1.00… The Mucinex is obviously to break up any mucus in my lungs and help me expel it, as an avoidance of pneumonia. In the hospital I did receive breathing treatments, as I have mentioned, and they also did “cupping” on my back. Basically, it felt like slapping (with a cupped hand) as a way to loosen any phlegm so it can be coughed up. David is continuing this for me at home after a very brief tutorial at the hospital!
I’m really looking forward to being back to ONE pill a day, because all these meds are a pain!
Ok. So I was not on my way to the Forum, but a funny thing did happen during my hospital stay. I wouldn’t call it funny-haha, but rather funny-weird. It certainly showed me the amazing team work at Penn Presby, but also was a little scary in the moment.
Given that this surgery was the removal of part of my lung, there were so many vitals that were monitored 24/7. This included, obviously, my blood oxygen levels, which they wanted above 90% (preferably above 95%). However, Tuesday night, the evening following my surgery and after visiting hours, my oxygen levels were showing as dropping. 80%. 70%. Lower. So I was put back on oxygen. And then those oxygen levels were increased, but there was still not a lot of movement on my numbers.
They requested an additional breathing treatment for me. This included albuterol, which made me a little shaky, on top of being nervous about all the hubbub. By this time, I had multiple nurses, multiple respiratory therapists, and multiple doctors in my room. There was even the critical care nurse, who walks around with a backpack and, apparently, she (he) can do “whatever is needed” in a situation.
They were all a bit confused because I didn’t look like cyanotic, I wasn’t out of breath, I had just taken a walk. The numbers did not jive with what they were seeing with ME. Perhaps it was a mucus plug in my lung, so an x-ray was ordered. In comes this giant machine for an x-ray in my room. All clear. (I was super impressed at how immediate all the results were. When they needed something “stat”, they got it “stat”.)
Then they wanted to check something in my arterial blood. (Not 100% sure but I think it was an Arterial Blood Gas test). The ABG test is used in severe lung issues to measure things like oxygen and CO2 levels. It also means drawing blood from an artery, not a vein (veins are normally used when blood is drawn). Arteries carry oxygenated blood away from the heart; veins carry de-oxygenated blood to the heart, so levels will vary based on where the blood draw was done. Arteries are also deeper and thicker, and a bit harder to draw from.
Where is an easily-accessible artery, you may ask? I certainly had panicked visions of them sticking a needle in my neck or something! But, hurray! There is a radial artery in your hand. (Who knew?)
Radial Artery is lower left in image
So now there is a room full of medical personnel, I’ve just had a breathing treatment and an x-ray, and now they are trying to stick my hand to draw blood from this radial artery. It took a few people holding my hand still, but they did get the stick. Surprisingly it was the respiratory therapist who did the initial blood draw, and she was awesome. The backpacked-nurse-lady eventually came back and did it a second time to confirm and that one hurt a bit more, but maybe because it was twice in the same spot…
Anyway, the almost immediate results were… great!
More puzzlement from the group gathered around my bedside, as things just are not adding up…. They are looking at me, with color in my cheeks, and not breathing heavy. They have a clear chest x-ray and good blood results. I’ve had a breathing treatment and I’m on oxygen. Nothing makes sense.
Eventually one of the doctors asked about my pulse ox monitor. “Let’s change it.”
And voila! I was immediately fixed! Turns out the monitor taped to my finger was acting up. Oy.
In retrospect, David and I were both remembering that I had used the bathroom earlier in the day, and while trying my best to wash my hands with two IVs and a pulse ox monitor taped to my fingers, I did get things a little wet. The nurse suggested the monitor should be changed, but that never happened. And I think we all forgot about it.
Oops.
The morals of the story: 1. The teamwork at Penn Presby is THE BEST. Everyone gathered, rallied, cooperated, and was truly interested in my well being. They did not take anything for granted, left no stone unturned, and were taking no risks with my health. 2. They may want to provide gloves or something to help patients with bathroom activities, especially when mired down with multiple medical devices attached!
The next morning, during rounds with the students and other medical visitors, I was the talk of the day.
Me, when describing my post-surgical pain: “I feel like I’ve been stabbed in the back.”
Doctor: “Well, that’s pretty much exactly what happened to you.”
Usually I’m pretty good about researching and asking questions and really understanding what is going to happen, but somewhere along the line, I completely missed that my surgery would involve going in through my back. I expected it all to be on my right side, but there are actually three incisions on my back. The first is right under my shoulder blade, and then the other two curve towards my right side. (Warning: photo below, in case you don’t want to see it.) There are two more incisions under the bandages that don’t come off until tomorrow.
Other than that surprise, the rest of the surgery went as expected / planned.
The day before surgery, I was required to take a Covid test. If it had been positive, my surgery would have been delayed by one month. I had been super cautious and didn’t leave the house, so I wasn’t too worried about that. My first official Covid test, I expected it to be uncomfortable, but it really only tickled!
This particular surgery was done at Penn Presbyterian, rather than the Hospital of the University of Pennsylvania, although both are part of the Penn Med family. “Penn Presby”, as it is called, is the trauma center of that large medical family and is equipped with top of the line surgical equipment. Equally impressive was their completely efficient operations, from registration to pre-op, to the emergency room to post-op, and beyond. Every. Single. Person I met through the whole process was amazing, supportive, kind, informative, gentle, helpful, and positive. (Their hiring practices must be top-notch, also!)
Luckily, my lobectomy was scheduled first on the docket, so my hospital report time was 5:30 a.m., with a surgical start of 7:30 a.m. In that two hour time period, I checked in, got in my gown and surgical cap by 6:00, met with the nurse, the doctor and the anesthesiologists, got my IV in, and was pre-medicated with Oxycodone and Tylenol. When I was wheeled into the OR, the clock said 7:28. Now that’s a well-oiled machine! I know their surgical volume requires that they are extremely efficient; it was just impressive to witness.
When I woke up in post-op, it was 12:12, around what was expected. While it only felt like 2 minutes to me, I know it felt like forever for the people waiting. I am grateful to David for his patience and worrying. It was not an easy week for him either. A lot of driving. A lot of waiting, and waiting, and waiting. Not a lot of sleep or good food. And yes, a lot of worrying. (Love you, dear!)
I’m not sure which drugs did it to me, certainly the oxycodone pre-med is a likely suspect, and I don’t really know what other drugs I got during surgery, but post-op including several episodes of vomiting. As I mentioned in my prior post on pain, I just do not get along with pain meds. At least we know I’ll never be an addict.
By the time I got on the floor, the vomiting was in check (thank you, Zofran and Compazine!). All of my nurses were AMAZING in every way you can imagine. The level of care I received cannot be overstated. And the team work was super impressive (more on that in a funny story in a future post).
Tuesday night wasn’t too bad for me. I slept pretty well, and all the meds from the surgery were doing their job. By Wednesday night, the meds were wearing off and it was a rough night. My girlfriend, Glo, who went through a similar surgery talked about that moment of just wanting to die, and for me, that was Wednesday night. The pain was horrible and I wasn’t taking much beyond Tylenol and Gabapentin. After a very long conversation with the doctor on service, who very much wanted to minimize my pain (I needed to be deep breathing but that’s really hard when you think you have daggers in your side and back), I agreed to a very low dose of Dilaudid via IV, along with Compazine to manage any nausea. The thought was that taking it intravenously would reduce any nausea. It seemed to work, at first, but after a few hours, I was sick again. There is nothing worse than heaving when you are in that kind of stabbing pain. It was a very rough night and I worried it would move my discharge date.
As it turned out, by Thursday morning, all of my numbers looked good, including the very important “air leak” monitor on my chest tube. That was the key to my seemingly early release. My surgeon came in, looked at those numbers, and said I could go home. David was happy since he wasn’t going to have to drive in the ice if I got discharged on Friday. My chest tube was removed (painlessly, may I add) and I was discharged. Even that whole process was quick and efficient! There was no waiting for transport; my assigned nurse wheeled me to pharmacy to pick up all my meds, so we didn’t need to stop at the pharmacy on the way home and to ensure I had all the meds I needed, and then he waited with me until David pulled the car up.
We got home yesterday afternoon and I’m feeling great. I’m resting, for sure, but also able to move around. I’ve been able to do the stairs without being out of breath, and my pain is tolerable (getting that chest tube out was EVERYthing). I am grateful to be feeling as good as I do while we wait for the results of the pathology. The details will not be available for 3-4 weeks. I’m prepared for whatever results come my way: Not cancer? New primary cancer? Metastatic cancer? And we’ll tackle that bridge when the time comes.
Thanks to absolutely everyone for the love, support, and prayers! It’s always great to have an army of supporters behind you! Always there to pull that proverbial knife out of my back in every way possible.
Far left image with stitches is right under my right shoulder blade, one of the more painful incisions. The next two aren’t so bad. Two still covered were ouchy, as well.
lights cancer action! 