God is the only one who could have gotten me through this. He’s who will help me continue to move through. What about tools that help me appreciate being with Him a little more at some times than others? Here’s a fun way I connect with him through his gifts. Sorry about the quality of the video. But, the message is what I wanted to share more than anything.
Hello out there. Hello. It’s time for an update. It’s been so long and it’s been too short a time. I feel as if what I’ve been through is so far behind me, and, yet, it’s so recent and even current as of this writing.
I had my 3 month post op visit with my oncologist, and met with someone from the reconstructive surgeon’s and the breast surgeon’s offices these last couple weeks. I am always so happy to return to their offices. Walking into the buildings and the familiar smells and hallways, the distinctive decor belonging to each… they’re all surprisingly comforting to return to. These places are where people have cared for me with such dedication and kindness.
It’s especially pleasant when I return with my husband. I ache to have him with me, when he can’t make an appointment, which is rare. It’s become “our thing” to go to these places these last few months, so routinely. I like the strangeness of spending time together like this. We often hold tightly to each other’s hands or I’ll slip right into the crook of his arm and side and walk like that the entire way. There’s almost a skip to my walk, when we are headed to and from. Maybe it removes the discomfort of the unknown.
At the appointments, I sit on the exam table or in my chair and I want nothing more than to reach out and just hug him, as we wait. Or tickle him. I get sort of giddy being there with him. I feel so very close to him, under such odd circumstances.
It’s new and yet we’ve gotten our rythm about it.
I saw a urologist, to add things to the mix. They were very efficient, having provided the appointment, a urine test and ultrasound right then and there. They scheduled a cystoscopy for my bladder in a few days. That’s a scary word if you look it up online, so I’m going to stop looking it up.
Something’s been amiss since the surgery. Maybe it was the foley catheter. Maybe I have something going on they have yet to detect. Either way, kidneys are clear of any suspicious going ons, but they are still curious as to the recurrence of four infections to date. Two were treated with anti-biotics and the other two came and went on their own.
You see, there has been blood on and off. Sometimes lots of blood coming from the wrong place. Blood that reminds me how much of itself there was, each time I went to the restroom. Blood you study carefully, scrutinizing amount, color, texture… It can keep you busy and on your toes, each and every bathroom break. Your heart can sometimes skip a beat involuntarily.
The cystoscopy will tell us more. I was told, urine tests and cultures are one thing, getting into the tissue to have that tell its tale will be a lot more revealing. We want my body to tell us its current story, so we know what we’re dealing with.
The oncologist isn’t too concerned. There doesn’t seem to be a link between these infections and my preventative daily meds. She thinks the urologist’s answers will help all of us know how to proceed, and yet, there isn’t anything to be too concerned about.
So, that’s the way we are handling this day to day. Same practical and effective way I did when I was first diagnosed with a suspicious breast nodule, almost five months ago.
The surgery three months prior feels ages away, yet, looking at my body, wrapping it up in the corsets, the abdominal binder, the girdles… all these strange accessories I have become so familiar with, reminds me, I’m in my body but I’m not.
I had to purchase a dress or two for a wedding we are attending this weekend. I literally asked the ladies at the store to help me dress my foreign body. A nice lady with very short hair overheard the reasons I shared for my dilemma of not knowing what style would work or not with my unfamiliar figure, etc… and she reached out and invited me to attend a monthly meeting at the, shall we call it, disease center.
I’ve heard of these gatherings. I was intrigued when she brought the meeting up, especially when she said it was for women who didn’t want to be there together for the reasons they meet, but need one another regardless. She acknowledged, to my appreciation, that I may like or hate them.
Meanwhile, while at the reconstructive surgeon’s office a day or so earlier, there was a welcomed sense of action and moving forward. There was a pre-op meeting to go over items, in preparation for the surgery I am going to have in less than a month. This is a much shorter surgery, running 2 hours vs. the 12 hour mastectomy and reconstruction three months ago. It’s to clean things up that needed time to first settle, after all the swelling everywhere. I felt like shouting out the answers as the Assistant enumerated the pre-surgery instructions, just to feel as if I would ace the quiz, if anyone was looking to keep score.
We’re still waiting to see if the faschia around my abdominal muscles – which needed to be cut to access blood vessels to feed the belly fat that are now my breasts – will benefit from repair in the future. We are waiting and giving it more time. There isn’t a way to know at this stage whether there is a medical need for a repair surgery. I’ll have to be scanned or imaged, or something. We’re not going to rush this one, as the surgery isn’t to remove a deadly thing as quickly as possible.
I went into the major surgery with hints of an oncoming cough. It manifested itself in full form just after the surgery. Catching a bug and seeing the effects it has through your body can take a few days. I got to experience it in its greatest, alarming glory during recovery.
I had concerns prior to going into the surgery that my cough might develop into this terrible one I was exposed to for a few weeks straight, however, I was more concerned with getting the disease out of my body than putting off the surgery any longer. The sooner they got it all out, the better and not quickly enough. Plus, I was cleared of any concerns during the pre-op appointment prior to that surgery. I also took every possible test under the sun to confirm I was strong enough and in the right shape to move forward with everything.
The next surgery will be nowhere near as concerning. I am glad to have a date and the details of recovery time, etc… and that I remember things like, by certain dates, to stop shaving, drinking anything that might thin the blood, like certain over the counters, wine, taking herbs, etc…
We have something to aim for and so, that visit felt very productive. I like the idea of productive. I like the semblance of moving forward, as much as this experience has taught me, more than anything, that it is best for me to slow down everything. Everything.
But I write best late at night. So, it’s almost midnight and my mind and fingers race to share with you.
The breast surgeon appointment was interesting and timely. It complimented the experience of running into the lady at the dress store very well. It reinforced the message from a magazine article I read in the waiting room about the effects of stress/anxiety on our health, specifically, this disease and its spread and prevention, as per many studies they mentioned.
I was given an article highlighting the significance mentally/emotionally for me and many others at the three month post op appointment. They liken it to standing on the edge of a cliff. It’s the, “We got through the diagnosis, the appointments, the tests, the surgury, the treatment… but, what on earth just happened?” There’s possible guilt from surviving it, profound moments of questioning everything from, “What could this symptom mean?” to “Is it coming back?” to “What am I going to do with the rest of my life?”
Yes, all of that. I felt relief to hear these unstable on and off trains of thought are normal. I have been a wreck on and off and I simply wasn’t expecting that after a clean bill of, “We got it out of you, we’re in the keeping things at bay stage now.”
I’ve since set aside my LITTLEseed Program. I offer my digital download cards to people with babies when I feel a tugging to do so, but that’s about it. I’ve mentioned my website on my youtube videos, but I haven’t done more than that. I referred a couple of people out to others who offer the nurturing work that was once my identity, even as the identity of wife and mother competed for first place.
I don’t know if I’ll go back to it. I just don’t.
I applied for full time jobs to take the pressure off of running my own business for so many years and the headaches and pressure that come along with it when you can’t quite re-capture the market you used to monopolize, in certain periods of time. I applied for part time jobs. I accidentally landed one, while looking for references to share with a potential employer.
It’s part time and involves recruiting host families for foreign exchange students whom I have the opportunity to support through the year. I’ve done this sort of work before, in a different capacity, and it’s pretty natural to me, so I think it’s good. Connecting people, building relationships… this is what makes me tick. Plus, the world could use a little more intermingling, in my opinion.
This is what’s helpful in this sort of position and, while the pay is modest, I get to feel that pat on the back fullfillment I have so desperately needed in the past to feel worthy or of value (warped, yes, but true.) But, the position does not include the constant pressure I might want to overload myself with, out of the unkind terrible habit of railroading myself just because.
It’s an adjustment to simply do what I can vs. make the impossible happen. I suppose it might seem impossible to place every single one of the remaining students, however, it’s honestly up to me to be aware of that pressure and transform it into a positive or negative motivator.
In other big changes news, the children are starting traditional school for the first time, after seven years of homeschooling. We went to orientation today. I thought I’d be horrified, but I was a bit giddy and nostalgic about middle school lockers, class changes, etc.. myself. It was all very tame for me, emotionally, afterall.
Husband and I also got ourselves a treadmill and weight bench and weights because caring for ourselves physically seems more relevant than ever. We want to continue in the habits we have established. I’ve started walking the dog longer and have taken up biking through town to run errands and just to enjoy sitting down and moving my legs simultaneously.
I’m cleared for abdominal muscle involving exercise now. I’m not sure which way to go. I have two very patient exercise balls that have been waiting in the wings. I’ll start in on those when the time is right. I’ll know when it is right.
And, when things are not right, I know there are resources. There’s even a LIVSTRONG program I was invited to check out. What’s involved is 12 weeks of free gym membership and coaching for breast cancer survivors. There. I said it. They’re offered at different venues.
I’ve also been given a counselor’s name who works specifically and very gently with survivors like me. Someone to help acknowledge the bizarre place of wherever the heck I am in all this right now. I’m in the present and all of a sudden in the past and in the future, in a good moment, in an excrutiating memory, moving quite nicely with the new tide or frozen in a ball, not wanting to move ever again… simply all over the place at any given time. Perhaps the counselor will learn something useful to me, hearing me out and helping me to connect dots that seem to have shifted in a completely new direction or have seemed to trail off as in an incomplete sentence or thought altogether.
Three months post surgery looks like this. At least, for me.
Apologies as the clip is a bit shaky at the start. Also, it is the three panel abdominal binder, not the four panel that provides less coverage and, hence, support.
4 WKS Post Op – Bilateral Mastectomy & DIEP Flap Reconstructive Surgery and…
- … she can soon be off daily aspirin, so off all meds until medical oncologist visit in 2 days and receives instruction on 5-10 year meds, based on results from tests on tumors from mastectomy!
- … her cough is all but gone.
- … all four drains have been removed!
- … she can start using beautiful c-section scarring cream, sent by a friend, on her abdominal surgical site and “new” belly button.
- … she can wear a lined 3 panel abdominal binder to support her abdominal muscles which may have permanently distended (possible premature torn stitches from force of coughing post op, which may need repair at another surgery.)
- … she is increasingly mobile prior to fatigue waves.
- … has started doing light chores which also encourage day to day range of motion exercises (loading top of dishwasher, folding laundry in fragments, light reheating/easy cooking, wiping down counters, stove, and made coffee a couple times!)
- … showers by her big girl self and has learned how to blow dry her hair, minimizing fatigue, by resting her bottom on the vanity.
- … continues to drink water heavily to stay super hydrated and stays committed to eating lots more fruits and veggies.
- … walks at a faster pace than last update and even more upright – almost all the way upright, though not quite.
- … still feels she has to catch her breath after standing, talking too long or just at the random times fatigue hits.
- … should wait another two weeks to: sleep on her side or fully prone on her back. So still on recliner overnight.
- … should wait until further notice before doing ANY abdominal exercises, but is okay to take short walks. Must stay away from any bouncing exercises or weight bearing activity.
- … has received some in person help and visitors.
- … managed to SLOWLY & WITH PLENTY OF BREAKS roll up rugs, wash living room pillows, blankets… when she was without hubby and big kiddo, and puppy had scary rash that might have been from a tick or, highly contagious to humans, ringworm!
- … took a ride with a friend to the vet to resolve that. Hooray! NOT ringworm but collaretes – not contagious & went away on own – but, hey, puppy shots due so that worked out great! Mindful not to hold puppy on leash herself, so as not to risk him bolting and straining her abdominal region.
- … received an out of state college best buddy, who offered to keep her company while big guys were on an overnight backpacking trip and also so all three guys could attend an end of homeschooling year gathering… said buddy brought her delicious home made pesto, farmers market burgers, made her lie down in the afternoon, shared stories about her favorite people, hit the grocery store, the post office and even registered the dog for us at town hall, as puppy now had all his shots!
- … received a local visitor and her lovely daughter, who brought much needed bandaids and itch cream, to help with our little guy’s barrage of bug bites, he couldn’t stop itching, flowers and a sweet breast cancer awareness key chain that says “Celebrate Life.”
- … received help from friends to pick up boys and take them to places she can’t yet drive… the homeschooling end of year gathering(s,) weekly music ensemble, IOWA tests (end of year homeschool tests we opt to have boys take to assess where they are at academically,) pick up and drop off of Mom from train station from the city/NJ.
- … has been out to lunch with hubby and kids when between doctor’s appointments and starving and didn’t do too badly. Again, carefully paced herself with walking to and from car and made sure to sit comfortably and stay plenty hydrated.
- … notices her body getting back into itself as when she is hungry, she is HUNGRY! Whereas, it might have been a more gradual sensation before surgery.
- … has less swelling between her breasts and the bulging abdominal muscles.
- … managed to nurse back to health our little guy, who did catch a cold, with homeopathic remedies, honey lemon water and diffused essential oils, without catching cold herself! Woo hoo!
- Has no idea when she’ll return to her entrepreneurial endeavors and will allow time to take as long as it needs, for her to fully recover.
- … is learning more and more that God is not only in the mountain high moments, the valley low moments, but the day to day ups and downs along the way and that’s pretty much all that matters, no matter what.
(Flowers from friends!)
Cool story on the blue flowers: There was a possibility that I would leave the mastectomy without my own nipples. Thankfully, due to the placement of the tumor(s) and my surgeons’ skills, that was not the case. Either way, I had discussed with a very good friend that I would tattoo blue roses (without having looked up their meaning) instead of tattooed nipples or no nipples…. or a butterfly on one and a dogwood flower on the other side I could animate when bored (joking)… She found me the most unique blue rose in the last photo. We’ll still get our blue roses tattoos later! The paper blue rose was a gift from a 15 year old homeschooling friend of ours. Cool coincidence!
The peonies are from another close friend’s garden who is endlessly dropping off, picking up – I can’t even count on my fingers!
The potted flowers are from my sweet friend who has no idea those were our wedding flowers!
There was another set of flowers, a basket of daisies that just wouldn’t give up on life. They finally did but I didn’t snag a photo. It was early in the recovery and from a very cool homeschooling dad & family.
You know the story behind the blue flowers!
Please excuse my Hugh Hefner outfit & my barking dog towards the end of the video. In case this is helpful, I was well enough energy wise and had minimal coughing for the time frame to return to my in home VIRTUAL office yesterday to prepare this. Everyone’s experience will be different, however, some of it may be similar and I wanted to offer this for what it is worth.
(Foot hugs from the culprit Barker.)