I’ve noticed and commented on it my whole life, yet it never ceases to amaze me how my real life experience changes my priorities.
Readers of this blog know all too well what I obsessively worried about when I first began treatment for cancer. The side effects from chemo were no joke – nausea (we have medication for that now), heart damage from the taxol (years from now) and lung damage from the radiation (small possibility, but by no means a certainty – I’ll worry about it when and if the time comes). What I was obsessively concerned about – when will my hair start falling out? Every time I shampooed, I asked myself – Is today the day? Is today the day it comes out in clumps in my hands? Sometimes I’d get out of the shower and just sob – my loss of hair wasn’t total, but my already fine hair was becoming increasingly thin. I knew I should have it cut very short, but I dreaded going to the salon, leaning back into the shampoo sink, and worried that that would be the moment my hair as a unit would simply fall out into my hairdressers hands. It didn’t.
After a time, though, I finally made an appointment to have my hair completely shaved off. The woman who shaved my head was wonderful, and I was surprised at how normal it felt to talk to her about it. When it was done, I didn’t wear the scarf or hat I had brought with me to wear out in public. It just didn’t seem like that big a deal, and in the short walk to the car I wasn’t worried about anyone seeing my bald head. Anyone following this blog knows that often during my treatment I would frankly just forget I didn’t have any hair, and would be surprised when someone would notice. Plus it was the middle of the summer, and I was having hot flashes from the chemo, so quite often I would look at people with a full head of hair, and wonder how they could stand it.
Being a one-breasted bald woman was also strangely empowering, as I found out one day when a salesman came to the door, unfortunately for him when I was in one of my “moods” (for details, see post “Bald Is Power” http://wp.me/p3b1hy-7g). So much for loss of hair being the end of my world.
Now we’re through with what I considered the hard part, treatment, and I can collect my reward, the tummy-tuck reconstruction. Yippee! I survived the first surgery, 20 weeks of chemo, and 6 weeks of radiation. We made it through the requisite number of weeks recovery, it was now time to plan the surgery. The preparatory phone calls and discussing the schedule for 3 weeks before, 2 weeks before, the week before, the night before, and the morning of the surgery. Crap. Now I’m remembering the details from the first surgery, and I start worrying and obsessing about everything. Ugh. More incisions, more drains, more IV needles, more pain. What was I thinking? Do I REALLY need two boobs?
Before I had even begun my treatment, I so looked forward to the reconstruction. The words “tummy tuck” breast reconstruction were nirvana to me. A new boob and a flat belly would be my reward at the end of the battle, after getting through the mastectomy (which I thought was the hard part – fool), the chemotherapy, and the radiation. As we have since learned, all the treatment was nothing compared to the endurance it has taken to get through recovery. What a slog.
However, once we started to get close to reconstruction surgery day, I started to worry about waking up in the recovery room. Well, waking up, period. It’s always a risk, isn’t it, when you go under anesthesia for surgery? Then I started worrying about pain management. I don’t do well with most pain medication, but I learned the hard way, after the mastectomy, the groggy, zombie-like feeling I had on the pain medication was infinitely better than digging myself out the pit of despair I’d gotten myself into by thinking “my pain’s not bad enough for a prescription drug.” Ha!
And then there was the constant nausea I experienced the last time I had surgery – I couldn’t even keep the anti-nausea medication down! But thankfully, we found something that worked for me (a scolpolomine patch, which is applied behind your ear), and so I was able to apply that experience to the new surgery. A conversation with the anesthesia team, and I was able to get what I wanted – the patch to prevent nausea, rather than experiment with various medications to combat the nausea – before I woke up in the recovery room.
But you know what kept nagging me at the back of my mind? The thing that really had me questioning if this was the right procedure for me? I knew I would end up with a smaller cup size at the end of this, than I had when I began it. I liked my boobs they way they were! Can’t we just put in an implant the same size as my tumor was? But when I signed up for this, all I could see was a flatter stomach – my reward, right, for having a boob cut off?
Fast forward to post surgery. I am back home, Ken and I settle into a routine – I sleep in the recliner on the main floor, but I call him on his cell phone whenever I need to use the bathroom, as we have no bathroom on the main floor (who’s the idiot who fell in love with a house in which you must either ascend or descend stairs to find a bathroom? Oh, yeah. It was me.) and I am not to be trusted going up or down on my own. The first couple of days, I have to pee every two hours, disrupting Ken’s sleep, but less so than if I took a spill down the stairs and end up back in the hospital, so we deal with it. By the end of the first night, I think Ken’s so used to it, he can spot me during my nightly stair climb in his sleep. But by the end of the second night, it’s getting old for both of us, and I’m fed up with sleeping in the recliner. My feet hang off the end, due to the quantity of pillows around and under me, which exacerbates the neuropathy, and makes my feet feel cold. I’m under doctor’s orders to avoid coffee, so this, among so many other things, is off the charts frustrating. My mood is irascible, when I’m not sleepy, or a puddle of tears. Sometimes even when I’m a puddle of tears, and I feel as if, sympathetic as he is to my troubles, my husband doesn’t fully “get” how terrible this all is for poor little put-upon me. I can’t use my right arm, I can’t have coffee, no one does the dishes the way I like them done, and I haven’t pooped since I came home from the hospital. Again and again I ask myself – what have I done? I was feeling pretty okay (so I had neuropathy and no stamina – at least I could use both arms, I could bend at the waist, and I was pooping fine!), why did I DO this to myself? I think that was the worst. I CHOSE to do this. I have energy to shower only about every three days, I can’t wear any clothes except camisoles and pajama pants, and I don’t want anyone to see me, other than my husband (he’s seen me worse) and my daughter (she’s used to seeing me look like a slob).
But gradually, the effects from the pain medication wears off, and I have my two-week post operative visit with my reconstructive surgeon, who gives me the all clear to return to my first love, coffee. After that I have fewer hours of self-pity and sadness, fewer episodes of unexplained crying (“Poor mama. You need some coffee, don’t you?” my wise 0-year-old once observed), and other than one frightening run to the emergency room in the wee hours of a Monday morning (I was pooping by this time, but apparently not enough, as I was painfully constipated – sorry to be so frank, but there it is), things have been steadily improving. I can go up and down stairs by myself. I can stand up in the shower (though I’m still very careful, and I worry all the time about falling), and I can do a load of laundry. Oh, and my caffeine consumption is up to a level that I find beneficial to my mood, as well as motility (nothing like coffee to get things moving).
I can now wear a soft, stretchy bra (so my one remaining original breast has support as well), and this past Monday I was able to put on a pair of jeans over my yoga pants, and zip them up. I’m told that some “flappers” (the adorable term used by posters on Breastcancer.org, to describe those of us who have had a DIEP flap breast reconstruction) have swelling in their abdominal area for weeks or even months after surgery, and being able to wear a pair of jeans over bike shorts or Spanx is a huge deal. For me, it was just exciting to have something different to wear, even if it was a little uncomfortable, and I did in fact take my jeans off immediately once I got home.
I’m now about 8 weeks post surgery, and I’m pleased to say I’m taking all of these milestones for granted. My hair is growing (still have some chemo curl left), and so now I have to do something with it when I go out of the house. Well, I don’t have to, but at least now I think about it, and sometimes I even give it a try.
Sometimes I brush against my new boob, and for a split second, I think it’s just the pillow padding that came with my surgical bra. Then I remember, I have two boobs again! And then I have to have a sneak a peek at my chest. Oh, I have cleavage again!
And you know what? My new boob doesn’t have a nipple yet, it’s sort of a funny shape, it’s got a couple of divots, and it’s surrounded my scars. It’s smaller (for now) than the “natural” boob, but it’s perky, it’s soft, and it’s warm. It’s all me, and it doesn’t contain a big, fat lump of cancer. And I love it.
For those of you keeping track, my initial reconstruction surgery is now scheduled for May 27. I say “initial” because I had assumed, and perhaps you did too, that reconstructive surgery meant “one and done.” It does not.
We have the first “big surgery”, then when everything settles, we follow that up with another surgery. Not as long as the first one, but we’re still talking anesthesia, stitches, and a hospital stay.
Then we have two more minor procedures, to encourage symmetry and an even appearance. To be frank, the surgeon builds a nipple for the new boob, and then we tattoo an areola, if I choose to do that. Apparently some women don’t. Can you imagine? I guess you’d get used to it.
Before we do ANY of that, I have to have a couple of scans done so that Dr. N can find all the blood vessels he needs to move tissue from my belly in order to build the new breast. I know I have to do it, I know the scans are easy, but I think I’ll be calling my GP for an anti-anxiety prescription refill just the same. Needles I can deal with, but those big white donut scanners, not so much. Too much time lying there with crazy $hit running through my head.
More details to follow.
Tomorrow is my third appointment with the micro-vascular surgeon who will perform my reconstruction surgery. Right after we met with the medical team to talk about my plan for dealing with my Stage IIIa breast cancer, I looked forward to this final stage of the plan. After the tumor was out, and I had made it through 20 weeks of chemotherapy, and 6 weeks of radiation, reconstruction with a bonus tummy tuck (I’m having a DIEP flap recon, which takes tissue from your belly to build a new boob) sounded like the wonderful prize for getting through a long and difficult journey. The hard part behind me, a new boob and a flatter stomach – sign me up!
However, right after my mastectomy, I seriously considered not going through with it. Actually, for several months after my mastectomy, I considered not having the reconstruction. The mastectomy took only 2-3 hours all told, while the reconstruction will take 8-10 hours. I had initially thought that the mastectomy surgery would be the hardest thing I had to go through – I had to survive the anesthesia, after all. That’s what I was truly afraid of. I thought once I woke up in recovery, the hard part would be behind me. I wasn’t truly worried about the chemotherapy or radiation, or the recovery. I honestly believed that recovery from removing my breast would be as simple as taking some Tylenol. Dummy.
It turns out that removing my 11.5 centimeter tumor was the easiest part of this whole thing, for me. They gave me the happy juice before I went down to the OR, and probably 15 seconds after I got in there I was off to La-La Land. Waking up in recovery was completely different than I had envisioned. It was traumatic. I felt all over sick, in pain, and disoriented. I couldn’t really communicate, I just laid there and whimpered. I’m not sure my conscious brain was fully aware of what was happening – in that moment my primitive lizard brain took over, and it only knew that things did not feel normal, and that we did not like it. Looking back on the experience, the conscious brain knows now that what I experienced was normal for me. But in that moment, and for months of nausea and muscle spasms afterward, it was only trauma, and not something I wanted to experience ever again.
I experienced that fear before I even met with the medical oncologist to go over the plan for chemotherapy. Since that time, I’ve been through a few other things that once frightened me. I had completed an endometrial biopsy as part of my diagnostics before the surgery, which came back benign. Right before I was set to start chemo, I argued with my first medical oncologist for three days when she insisted I repeat that extremely painful procedure, and could give me no good reason why I should, and then became insulting when I asked to speak to the gynecologic oncologist who had done the biopsy. I changed medical oncologists, and I have completed 20 weeks of chemotherapy.
I have testified at a murder trial, and seen the verdict and sentencing of the guilty party. I watched the whole nightmare of my father’s murder age my extremely vital and resilient grandmother, until she finally decided it was time to go, having seen the guilty party duly sentenced, if not appropriately punished. I don’t know if there is an appropriate punishment for the evil that was done to my father – at least not on this earth.
I have also completed 6 weeks of radiation, and I have had my chemotherapy port removed.
With all this behind me, I am now able to look forward to what the micro-vascular surgeon has to say, and I can honestly say the fear I experienced last spring is not with me today. Whether that comes from the fact that the memory of that experience has faded, or if because I know I have faced worse and survived, I really couldn’t say. I am not sure that I care. The fact remains that reconstruction is neither the prize at the end of the journey, nor a terror I must survive in order to get back to normal. It is simply one more fact of my life.
Our daughter has been sick this week.. Cold and upset stomach. So I took over doing stuff, when the “Mama!” call came. Switched to paper towels in the bathroom. Trying to be careful to make sure Tina doesn’t get sick. Being sick would delay her surgery and we are so ready to move on and get that thing out of her.
We had our first visit to UW Surgical Center. What a nice building. Parking costs and system not as good as the SCCA, but better than Virgina Mason. (You knew a parking update was coming…)
We met with the reconstruction surgeon. Interesting twist… Tina is back to the type of mastectomy that Virgina Mason recommended.
After seeing Tina and her assessing her size and taking into consideration that she is scheduled for radiation, he has recommended not doing the skin sparing mastectomy.
- Less pain ongoing from the expander and fewer Dr visits to get the expander cared for
- Fewer complications
- easier surgery and faster recovery this week
- And will use skin from her “tummy tuck” that has not been compromised by radiation
- Easier to model and match with the other side for her
- He was specific that the “hang” of the breast that is seen standard necklines will be more natural
- Larger scars where the skin sparing would take everything though the removed nipple, this one will have long scars.. but they fade and will not be were most clothing (especially Tina’s style will how it. Out side of DRs there are only two of us that will ever see them.. I am fine and I like that her initial surgery will be easier to recover from.
We learned two new things.
- After all this is over.. some times the feeling in the rebuilt breast can return. This is different for everyone.. but interesting to note.
- Also if after her mastectomy if signs of arm swelling (Lymphedema) are detected, as part of the belly flesh transplant they can take a few lymphnodes too and improve the proper lymph draining from the arm. Cool
This may have been in Virgina Mason team’s initial thinking.. but it was not communicated as a recommendation / choice. we felt very much steared and not really hearing about options.. AND since we had read about them.. I think this added to some uncertanty that we were getting all our options. It might be that we know more now it or that there was just not as good of communication. In general communication and a feeling of involvement is where I think the SCCA team and affiliates seem to excel. Nipple sparing has never been an option for Tina… but we did touch on it this week in the discussion. Skin sparing and nipple sparing was never mentioned at VM so we could never really understand why it wasn’t being considered.
On the lighter side
Tina got an unexpect bonus at work.. So we we replaced the long dead and ratty family room sofa and rock hard futon with the first furniture we ever bought together outside of a new bed. Leather Sofa and Recliner all with power reclining.. mmmmmmm
This will be good for Tina as sleeping partly elevated is where she will want to be for the first few days.. so consider it a medical expense..
Also visiting family will find a night in the reclined ends of the sofa or the chair much nicer then what we had before.
Life keeps moving forward.. though one night as I went to sleep.. I did realize this is one of the most permanent things ever in our life, expecially in hers.
Marriage, kids, jobs, mortgages are commitments and it is possible to walk away from them.. and too often we see that… even when kids are involved. But this is not commitment.. it is enforced change.. We have had discussions about it and dealt straight on with the fears. I am not going anywhere.. but I also know that the coming year is going to be tough and build or test some character. Tina needs to be ok with what she is feeling as this happens and I need to make space for her to do that. Love.. it’s about times like this.. not just the lovely hormone frenzy that cements it all at the start and makes it fun along the way.