A recipe for living with cancer.

Posts tagged ‘surgery’

Hurry Up and Wait!

I love the expression, hurry up and wait.  This has been what I have done for the last two years dealing with Cancer and it’s consequences.  When I first saw my PCP that fateful day in May 2011 and she immediately got on the phone to get me a mammogram, that was the hurry part, then came the WAIT.  The mammogram was done and then there was the wait…someone had to look at it…then I had to wait until the next day until someone else had to look at it and confirm what the first person saw. Then the regular biopsy, MRI biopsy, CT scan, surgeries, hurry, wait, hurry, wait, hurry, wait.  It’s amazing we stay sane at all with all of these ups and downs and worries.

The whole experience has been like this — the first visit to the surgeon…we need to do surgery…but you can go to Japan first because it’s probably taken 5-10 years for the cancer to get to this point so surgery can wait.  Then when I refused to have my lymph nodes removed the surgeon said, well now you have to wait for surgery and do chemo first.  I would hurry to my chemo appointments and have to sit and wait.  See the oncologist…sit and wait.  The nurses giving me chemo never made me wait, they knew, they understood, let’s get this going and over with.

Now I want to hurry, I want to hurry and start PT, I want to hurry and get a sleeve on my arm, I want to hurry before it gets worse and my sub-clinical turns into clinical lymphedema. But I have to wait for the appointments and the measurements and the therapist to call the sleeve maker and then I can get the sleeve.  I don’t want to wish time away, but there is an urgency to all of this, the urgency of being without the tumor, the urgency of getting through chemo, radiation, the urgency of getting the surgeries over with and recovering, the urgency of being healthy again, the urgency of wanting to be done and move on, the urgency of never knowing what tomorrow will bring but wanting to spend it the best way possible.  Whatever that means. Like everything else in life, I just need to wait.

My grandson keeps asking his Mom, when will it be my birthday I can’t wait…she tells him when the trees all have green leaves on them, the flowers are in bloom and the weather gets really warm (July). He can’t wait for his birthday, he wants it to hurry up, for the present, the party, the cake?  Why should he have to wait?  I have had to wait for the painful, the uncomfortable, the disgusting, the depressing, the unnerving, why should he have to wait for the fun and the happy?

Maybe I should just make him a cake and give him a present now because who knows what tomorrow brings while we hurry up and wait.

 

Out of My Control

Tom needs a haircut.  I know this because I can look at his hair and it’s getting a bit messy and long and a bit uneven.  Duh.  When I suggested he get a haircut this week he said he was to busy, he’s going out of town, and he’d try to get it done before surgery next week.

I stopped and thought OMG it’s next week.  Totally consumed with this surgery for the last 10 months I was surprised when a slight shiver when up my spine when he said, next week.  A gnawing sense this is unmistakably a huge decision layered with all kinds of self doubt, self worth and self confidence issues has not been lost on me.   Once again I am in a situation where I have no control.  I have done everything I can to be physically fit and healthy for the surgery, gotten everything in order at home-  OK, not the office, the office is still a mess- and should be fully prepped and ready to go. Stand like Wonder Woman! Be bold, fake it till you make it.

I have been behaving like a pregnant woman during her last month of pregnancy, nesting.  Getting everything ready so we don’t have to think about or worry about things during my recovery. Control, huh.

Get the furnace its seasonal service- check; get the water system outside buttoned up for the winter, check, no un-check missed the guy, reschedule; get a new cleaning lady, check; get out my winter clothes and put away my summer, check; get out winter blanket, check; prep garden for winter, check; bring in last of seasons harvest, almost check, there is still some oregano and thyme out there. I even cleaned the two year buildup of dust and dirt around the motor of the refrigerator.

I have scheduled a cookie baking night and the kids are coming for the weekend and will help with a few other things on my list, so we should be good to go.  I think I am ready, out of control, but ready.

Mom always said do not waste your energy worrying about the things you cannot control and this last year and a half has been one long -out of my control- journey.  This is the final leg and once done I can redirect my energy and thoughts to other things.   Right now, Tom needs a haircut.

Two bowling balls on my chest

Traveling with skin expanders should be no different from everyday living, right? Every time I fly I feel the expanders get harder as if they have had more saline injected i into them.  I know this isn’t true, I know the saline is inert and should not expand under pressure, but I swear, every time I fly, the next day I feel like I have two bowling balls on my chest.  They feel fuller and  more pressure than before, but this is not logical.  After just writing the post on hypochondria I should be able to say, it’s all in my mind, but it’s not, its in my chest and painful.  It doesn’t look bigger, the tension when you press on it seems the same, yet it feels different.  Could this be phantom pain?

UPMC recently called me and asked if i would participate in a survey based on my bilateral mastectomy and phantom breast pain.  I’d thought about this a lot since the mastectomy and had moments when I thought I was nuts.  Moments when I had the feeling of let-down associated with nursing a baby.  The first few times it happened was early on and there was still much discomfort from the surgery.  But later after most of the discomfort had disappeared I would suddenly feel that let down, and would look down, almost expecting the milk to start flowing.  The questions on the survey involved mostly itching and pain and I was surprised that someone else knew about this.  It still amazes me how much of a bubble we reside in during breast cancer…of course other people feel these things.  And of course you would, you just lopped off two very sensitive body parts and how could I not expect to have phantom pain?  The pain wasn’t the worst part, it was the itching–I will get this terrible itch and need to scratch, and when you go to touch it, you are totally numb, so scratching has no effect on the itch.

This is mind bending, having this incredible itch and having no way of effecting it.  But cancer and cancer treatment in and of itself is mind bending.  Removal of breasts, infusions of toxic substances, radiation producing blistering burns all in the name of healing.  And our bodies do heal, and our minds chug along behind trying to make sense of it all.   Someone called me a survivor the other day, the first time since this began.  I don’t feel like a survivor, I feel embattled, tired and confused.  Everyone marvels at my great attitude and how great I look, how upbeat I am.  And I am, unless I get off a plane I’ve been on overnight and feel two bowling balls on my chest.  Then I feel this is the confused time, the tired time, the time I may not be so upbeat.  But then my overnight plane ride brought me to Israel and I get upbeat again.  So big deal, two bowling balls on my chest, it’s only temporary, surgery is soon…then I’ll have something else to complain about!

What a Fabulous Day!

What a Fabulous Day Smoothie

1 cup unsweetened vanilla organic almond milk

1 cup organic frozen strawberries

2 T organic agave

1/2 banana

1 cup assorted leftover fruit in frig, berries, pineapple etc

1 cup fresh organic kale

Blend and enjoy.

The sun is shining and I am alive, what a fabulous day!  My kids and grandkids are healthy and my hubby loves his job, what a fabulous day!  My niece made it through 12 hours of surgery, is out of the ICU and doing well, what a fabulous day!  I have radiation and major surgery to finish this cancer therapy, but I don’t care, what a fabulous day!

I was brightened this morning with a phone call from Josh.  He calls almost everyday either on the way to work or on the way home from work.  Today was a “bluebird sky” day in Jackson, WY and while we chatted he saw two otters having a high old-time slipping and sliding and diving in the defrosted stream.  In my mind’s eye I could see them just having a blast and reveling in the spring thaw and cool or COLD water rushing over their dense fir.  Then he saw a swarm of snow buntings (birds) -20 or so -dashing and diving, swerving and banking back and forth in front of him on the road.  He mumbled about loving his job, loving it there, and loving his life, what a fabulous day.

He told me about a group he is helping lead this week, 30 ethnically diverse high school students from all over, many from inner cities, brought out to learn about jobs in the national park service.  The national park service is not diverse and they are trying to change that, kudos to them.  These kids flew in last night to cold temps in the single digits, huddled deep in their coats, hands shoved deep in their pockets and darkness so complete you could barely see your hand in front of your face.  They were probably freaking out thinking what have I gotten myself into… After Josh and I marveled at what he’d seen, the blue sky, the mountains starting to  explode against the crystal clear backdrop, he said; “these kids are waking up after being cloaked in darkness and trepidation last night and looking out the windows and seeing this, how amazing is that!”

I would love to have been there, a fly on the wall, as these young kids got their first view of the day, their surroundings, the excitement and the wonder, you can’t help it out there, its transformational.

I live vicariously through Josh on these phone calls when he sees something, hears something, or is stopped by a bison(s) crossing the road.  I feel as if I am there and can’t wait to get back to experience it myself.

Buoyed by my Jackson fix I did a bunch of stuff around the house and sat and had my organic, vegan fruit and veggie smoothie for breakfast.  I filled out a questionnaire from UPMC Cancer Center about the care I have received thus far from the cancer center.   I thought about the last 10 months and what I’ve gone through, what my niece is going through and like the view of the Tetons rising from the ground to meet the sky, suddenly realized, I feel great today, what a fabulous day.  I am done with chemo, that was awful, but I am done, I am done with three surgeries and have one more, almost done and I have radiation, but I feel great today, even with the discomfort of the surgery, the skin expander, I feel great.

I am so lucky, I am so lucky, and Reviva can now say Ghee…what a fabulous day!

Surgery

What is there to say, I have an unexpected surgery tomorrow. The surgeon forgot or missed the lymph node with the titanium marker from the original diagnosis. I could leave it in but there is still cancer in the node and why leave any cancer that we know of in my body. It should be a quick surgery but I am still anxious. Quick or long, the preparation process for surgery remains the same, pre op exam, blood work, no food after midnight, no meds, and get up early and wait. I should be out of surgery in an hour and home by late afternoon.

My niece on the other hand goes in for surgery on Friday and faces 8-10 hours. My prayers and good thoughts are with her and the family and I hope their wait goes quickly and is I uneventful.

The Truth about Skin Expanders

They hurt!
Uncomfortable doesn’t cover it when it comes to skin expanders and the addition of more saline. Its difficult to explain the feeling but I think I’ve come up with a few different examples that might ring a bell with most.
There is no incision pain because the entire breast is numb to the touch. According to the surgeon this will go on for a few months. The residual pain from the surgery is caused by the edges of the skin expanders all around where I have sensation and feels like something is sticking me in the chest which it is. I can deal with this, it’s the pressure from the saline expanding the skin that makes me cringe.

Ladies who have breast fed…remember the sensation when your milk came in and your breasts were so uncomfortable, tight, and feeling as if they may burst? The relief came as the baby nursed and relieved the pressure of the milk in the ducts. Well think of that sensation with no relief, no let down, no release, just pressure…oy. I must wear a good sports bra during the day and at night and I sometimes feel like I just want to scream. A couple days before the next injection of saline it begins to ease up….and starts again. Thank goodness only one more.

For you fellas…think about over-eating on thanksgiving or any holiday dinner where you cannot swallow another bite and your stomach feels like it will bust. You are wearing a tight pair of pants and cannot open a button, or loosen your belt, or lay down and relax, your innie belly button has popped out you are so full. It doesn’t digest and you wake up the next day feeling exactly the same way, like your belly will bust. This is how skin expanders feel.

Simple huh!

BTW I will need radiation therapy as it turns out. The radiologist was coherent, smart and logical and everything he said for getting radiation therapy made sense. If there is any sense in irradiating a portion of the body every day for six weeks. Hmmmmm.

Gat Wal Soon!

photo-39

The first day out of surgery Miriam shows up with cards from the kids.  This Zelda wrote completely on her own without asking for any help.  Worthy of framing!!

The story I mentioned about IV’s…In the old days when Tom went to Medical School, medical students were thrown in to the fray and learned how to do everything starting year two (correct me if I am wrong honey).  They practiced giving shots, IV’s, all the stuff necessary to take care of a patient just in case you were the only Doctor available on Gilligan’s Island.  The Professor and Maryanne were good, but a fourth year medical student could have ministered to all of their needs, back in the day.  Today’s students are a different breed entirely, not given as many opportunities because of specialists, nurse specialists, PAs, nurses and IV teams!  To be the first guinea pig on which a newly minted medical student tries to put in an IV, not where you want to be.  However, Presby, Montefiore, Magee, all teaching hospitals and one of the benefits is the talent it attracts, but also the ability for new students, interns, etc. to learn.  Someone has to be your first.

When I went in for the sentinel node biopsy there was a medical student with the anesthesiologist.  He asked if the medical student could put in my IV and I said sure, they have to learn and I should help just as everyone else should.  Keep in mind I still have 8 IV treatments to go and need to not blow out any veins or lose possible sites for an IV or they would need to put in a port.  I don’t care who does that, its something I do not want to have!

Tom jumped in and said, NO WAY, she needs to keep all of her veins in tact.  Then he asked how many the medical student had done…this would be his first.  Tom turned to the medical student and said, “sorry, she needs all her veins for chemo and we can’t afford to blow one.”  The anesthesiologist, I felt almost begrudgingly, put in the IV.

Comes pre op for my mastectomy and in walks a young man and introduces himself as a nurse anesthesiology student and he is here to put in my IV.  I said, sorry you can’t put it in.  The pre op nurse comes over immediately looking very upset and says, “oh dear, you must have an IV to do the surgery.”  I said, “I know that but HE can’t put it in get me someone else!”  I thought I was so smart.

Tom jumped in once again, “no Barb he can do it he’s not a medical student he is a nurse anesthesiology student and has to be an RN before he can do this.” Man I thought I had this all down!

I asked how many he’d done…he said 40 -50 as a student, but he’d  been a nurse for a while. He said,”I’ll make a deal with you, I get one shot and if I can’t do it I’ll have someone else come in and do it.”  He did a fine job.  But medicine is certainly confusing.

And one wonders why Obamacare is 900 pages and complicated, you need a playbook for everything, setting up surgery, morning of, letting the patients know, pre op, surgery, post op, floor care, nurses, aids, dietary, it’s remarkable.  When I get the bill I am astounded by the cost- I/we must not forget everything that had to happen to get me to surgery, and successfully through surgery and the number of people who touched me literally and figuratively. Lets not even consider all that has transpired to get me to this point.

All the people who I interacted with in the 24-48 hours surrounding my mastectomy:

Scheduling/coordinating surgery: 2 people; morning of surgery: 8 people; surgery I can only guess: 10-12 people; recovery and transport to room: 4 : in the room: nurses, residents, interns, medical students, post doc and aides: 16 that I saw, this does not count anyone behind the scenes in the pharmacy, kitchen, housekeeping, pathology,etc. Discharge and transport: 2.  In 16 1/2 hours  42 people took care of me and those are only the ones I remember.  Those 42 people took me safely through this surgery and one more step to survive breast cancer.  Sure medicine is messed up financially and could use some reworking, but 42 people…whatever the cost it is worth every penny.

Thank you to each and everyone who helped me and also to those I did not see who I know were essential to the entire process.

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