Thursday, March 28, 2013
14. It's a Cruel Summer
Strange voices are saying
What did they say
Things I can't understand
It's too close for comfort
This heat has got right out of hand
It's a cruel, cruel summer
Leaving me here on my won
It's a cruel, cruel summer
Now you've gone ...
Bananarama's 1984 hit Cruel Summer, pretty much sums up my summer of 2009. It was cruel. No, I didn't have five thugs chasing me down on BMX bikes or beating me up during a soccer game on the beach (Karate Kid references for those of you younger than 30); rather, I had cancer cells hiding in my body, threatening to spread through my lymph nodes and I was alone. My family and friends hadn't deserted me ... in fact, they were my saving grace. The healthcare system deserted me, failed me, and left me to find my own way through the maze that is breast cancer treatment. I was left lost in limbo in the field of doctors and appointments. I needed a Mr. Miyagi presence in my life to teach me how to fight back ... against cancer, not the five thugs in skeleton costumes.
I met with an oncologist on July 22nd. In that initial meeting, Dr. F introduced me the information of if/when breast cancer does metastasize, it is usually found in the brain, liver, lungs or bones. That being the case, he ordered several tests including chest CT scan, full body bone scan, brain MRI and breast MRI. (I'm a tad claustrophobic and the idea of being closed in a MRI machine made me a little hesitant. I was given a prescription for Valium.)
The next few weeks became a blur of doctor appointments and tests.
July 23rd - one month follow-up appointment with Dr. L, he was pleased with incision healing; had blood drawn at the clinic for testing
July 24th - had CT scan (the technician was Tammie's husband, super great man); was given injection of the contrast dye and told to return three hours later for the full body bone scan
I caught a plane Saturday morning to Utah and spent a great week with my nieces, nephews, sisters and parents. A week later, I returned to Sacramento and the next day caught a plane to Las Vegas for a work conference. I had purchased a new bathing suit that sufficiently covered my breasts/scars as I knew I'd be enjoying a little down time poolside. The rest of the tests were just going to have to wait.
August 6th - breast MRI done at the imaging center
August 7th - showed up for my 9am brain MRI appointment only to be turned away (after the had completed my registration and had me all set to go) because I still had the contrast dye in my body from the day before
August 10th - had brain MRI
Enduring all the testing wasn't difficult. I was becoming accustomed to all the needles and dyes. It was the waiting for results and time in between all these appointments that rattled me a bit.
August 13th I returned to meet with Dr. F. He cut to the chase rather quickly. All the test results were fine; no sign of my cancer having spread. However, the breast MRI did reveal a 3/4" diameter circular mass in my right breast. He wasn't sure if it needed to be biopsied or not and decided to postpone any additional testing until after he had met the following week with the hospital's tumor board. Meanwhile, he thought it best I consult with a radiation oncologist. I left the appointment that day, referral in hand, somewhat confused and began seeing myself getting lost in the metaphoric maze. What was a tumor board? Why aren't we automatically going to biopsy that mass? Why do I consult with a radiation oncologist right now?
Apparently Dr. F pulled some magical trick out of the rabbit's hat and I had an appointment the next day with Dr. R, the radiation oncologist. The appointment with Dr. R would become the starting point of my real breast cancer maze. And, quite honestly, I thank her for her honesty that day. She introduced me to another possible path in the maze ... one that would result eventually in saving my life.
Dr. R refused to address or discuss my possible radiation treatment. It was much too soon for that. There were other matters she wanted to talk with me about. She reviewed with me, with a straightforward and honest voice, the situation at hand. I was 34, my paternal grandmother had been diagnosed with breast cancer at 34, my cancer was bilateral (it's said only 4-5% of breast cancer is diagnosed as bilateral), and the cancer in my right breast had been invasive. There was too much going on here for us to ignore and jump right into radiation. She asked if I had been advised about mastectomy. Not really, the doctors thus far said that with the bilateral lumpectomy, radiation daily for six weeks, and five years worth of hormone therapy, the results are practically identical to those of mastectomies. She didn't even blink and said to me, "You need to get out of that tiny town and county hospital. Your case is too unique and you need to be treated by people who are more experienced with this." It wasn't a suggestion. I saw it in her eyes and heard it in her voice.
"You should consider mastectomy of the right breast certainly and maybe, quite possibly even the left, but that's more up to you. The right side has that mass that we don't know anything about just yet and the cancer was down to the chest wall. Maybe consider going to UCSF, as they are the best around. They even do nipple-sparing mastectomies. You should see Dr. E there."
"Have they talked to you about getting an Oncotype DX test?" she continued.
"A what test?" was my elegant reply. She wrote it down on a post-it note for me.
"Oncotype DX. There's a company, one company, that does this test. They take your specific tumor taken from your lumpectomy and they examine it. They divide it into twenty-one genetic markers to help evaluate and estimate the likeliness of a recurrence. You have to have this test. Some insurance companies won't cover it because it's expense. Thousands of dollars. But you have to have it. Tell Dr. F to request it. And, meanwhile, you should consult with a medical oncologist. Here, go see this doctor. I'll even call her to give her a heads-up about your case." She wished me well and said that if I still needed radiation down the road, she'd be happy to treat me. I left that appointment with a referral to see Dr. C. I had been given very valuable information, but I was getting deeper and deeper into the maze.
Craig wasn't available that day, so a good friend of mine volunteered to accompany me on my consultation visit with Dr. C a few days later. Karen's wife, Jill, had been diagnosed with breast cancer six weeks after me. Together, they had educated themselves with important information needed to help determine options, treatments, etc. Karen and Jill were already good friends of mine, but we became family because of breast cancer - warrior sisters.
While Craig was my papa-bear protector, Karen became my momma-bear protector that day. We emailed one another that morning with our lists of questions to ask of this highly regarded medical oncologist. I asked Karen to bring my list and check off the questions as I asked them. If I missed something, she promised to be my voice and ask for me. My list of questions went something like this:
• need thorough explanation (in English, not Medical Talk) of surgery pathology reports including significance of the cells found in the second lymph node? what stage is my cancer?
• how do we ensure all other nodes are clear?
• is all the cancer out (as the pathology report indicated the margins were not clear on the right side)? • how important is it that the tumor in left breast turned out to be twice the size the tests had indicated it would be?
• why would Dr. F be hesitant to biopsy the new 3/4" circular mass in my right breast?
• if we do biopsy it and it's negative, what are the odds of it being a fasle-negative?
• if it's positive, what next?
• what is this Oncotype test all about?
• how are the three levels of result treated?
• how important is my family history, even considering I tested negative for the BRCA1 gene?
• how does my diagnosis influence screenings and/or odds for my relatives (sisters, mom, nieces)?
• without mastectomy, is radiation absolutely necessary?
• possible effects of radiation on left side especially (concerns about lungs, heart)?
• possible effects radiation might have on possible future treatment of mastectomy/reconstruction?
• side effects to my ovaries/reproduction options?
• is chemo necessary if no mastectomy? if mastectomy is done?
• length of expected chemo treatment? what kind of chemo and expected side effects?
• do I have to lose my hair? (Yes, at the time, losing my hair was somewhat concerning to me. We'll get to the whole hair as a shield topic later.)
• is mastectomy the best chance of reducing my recurrence odds and if so, by how much?
• thoughts on nipple-sparing mastectomies?
• pros/cons of types of implants for reconstruction, if needed?
• will I have to take Tamoxifen and if so, for how long?
• side effects of Tamoxifen? odds of getting ovarian cancer from this drug?
• what will Tamoxifen and/or chemo do to my ovaries/reproduction?
• if the chemo and Tamoxifen will damage my ovaries, should I consider freezing my eggs?
• long term effects of this drug?
• should I seek third, fourth and fifth opinions considering my unique case?
• why are there so many different interpretations and thoughts about what's going on with my case/cancer? who is right?
Those are just the topics that came to mind that morning while I was emailing Karen. Many more would surface, believe me. Karen added some important questions to the list as well. I ended my email to Karen with this paragraph (and yes, I do have a print-out of all of this in my medical binder, which is actually now an over-flowing box of papers):
My main concern is that I'm not going to die from this right now or even in five or ten years. I want to give myself the best possible odds to eliminate recurrence (as I know it's harder to treat recurrence and a recurrence is more likely to be diagnosed at a progressed stage). I have two nieces and six nephews and I am determined to be around long enough to see them each have their own kids!
Dr. C was highly recommended and educated. I suppose I was secretly hoping she was going to turn out to be my Mr. Miyagi and guide me through the rest of this journey. Nope. The appointment with Dr. C was significantly unhelpful. I felt like a checklist to her ... answer this question, mention that, check it off the list, move on. She gave me answers I could have found in any book about cancer and did nothing to relieve any of my stress and frustration. She wished me well and off she went. I left that meeting feeling even more lost and without direction.
I thought to myself, "What do I do now?"
Hot summer streets
And the pavements are burning, I sit around
Trying to smile
But the air is so heavy and dry
It's a cruel, cruel summer
Leaving me here on my own
It's a cruel, cruel summer
Tuesday, March 19, 2013
13. That's a Wrap!
Over the days that followed, I struggled to improve my mobility. I learned that spaghetti-strapped tank tops were my friend. I couldn't lift my arms over my shoulders, so these tops became my saving grace as I had no choice but to dress myself. (Remember, there's no text book given to you about all this and there is no magic little genie that accompanies you home to help your recovery.) I couldn't shower, but baths worked well enough. I had stocked up on wash cloths and the best, most sweet smelling bath scents from Bath and Body Works. I may have been forbidden to shower, but I refused to smell badly.
A week after surgery, Dr. L welcomed me back into his office for the one-week post-surgery check up. How I had hoped he'd say we could remove the saran-wrap and let the fresh air get to the girls. He was quite happy with how the incisions were healing but said it was best to keep the wrap on for another week, at least. Ugh.
The visit was two-fold. Not only was I there to have the healing incisions checked, but it was also time to review the preliminary pathology results from surgery. Remember, during the surgery, Dr. L had walked into the waiting area and told Julia and Craig that "we got it all, margins are clear" so I expected this to be a simple review.
L DCIS only, close but clear margin, node clear, still stage 0
R 6mm invasive CA as well as DCIS to deep margin only (can't dissect deeper).
Nodes clear. Stage 1-B, still good news. All tumor out!
Giddy Craig about fell off his chair as he breathed a deep sigh of relief. All I focused on was all tumor out, clear margins, clear nodes ... to me, this meant no chemotherapy. My incredibly thick head of hair was saved! Dr. L informed me I'd be referred to an oncologist for additional treatment, if needed, like radiation and hormone therapy. Dr. L wanted to see me back in about three weeks for what would be the one-month post-surgery exam.
My flight departed at 6am the next morning. I was headed to Billings, Montana for the Holiday weekend. My chest was still raw, sore and I was incapable of carrying anything weighing more than a pound or two, max. As I checked in at the counter, I explained my surgery of a week prior, showed the lady my lovely pink tube top and asked her if I could have my friend assist me to the gate. Craig was given a security pass by this kind woman. I was given a medical authorization card and allowed to pre-board the plane. Craig hauled my carry-on bag through security and to the last possible step before the loading ramp. From there, I had to carry it about 100 feet and it was pure torture! There was no way it was going in the overhead compartment. I shoved it under the seat in front of me.
At one point during the weekend, the adults found ourselves downstairs preparing to watch a movie. My sister Caren, her husband Todd, and my mom were all sitting around the couches chit-chatting. We talked about my surgery, pathology results, etc. Todd, being a veterinarian, was intrigued with the concept of the saran-wrap material the surgeon had used in place of steri-strips. I asked him if wanted to see. He looked at his wife, then back to me. I could tell he was mentally debating the moral decency of seeing his sister-in-law's breasts against his intrigue in this mysterious surgical wrap. I told him it was a surgery just like he performs all the time on the animals in his clinic and I had no problem showing anyone what the incisions and wrap looked like. Skin, tissue, blood ... it's the same on humans and animals.
I removed the ugly, pink tube top and displayed my sewn-together, saran-wrapped chest. Caren glanced quickly and didn't comment much. My mother looked, winced, and her face quickly turned to disgust at the sight of my incisions, the dried blood and bandaging. I laughed and rolled my eyes. Todd admired the seemingly well-healing incisions. He didn't see me, the sister-in-law he'd known since I was sixteen years old. Rather, I think the wheels in his head were spinning as he pondered how his practice might be able to utilize this saran-wrap adhesive on their patients. I wonder how many dogs and cats were used in testing it out.
A week after surgery, Dr. L welcomed me back into his office for the one-week post-surgery check up. How I had hoped he'd say we could remove the saran-wrap and let the fresh air get to the girls. He was quite happy with how the incisions were healing but said it was best to keep the wrap on for another week, at least. Ugh.
The visit was two-fold. Not only was I there to have the healing incisions checked, but it was also time to review the preliminary pathology results from surgery. Remember, during the surgery, Dr. L had walked into the waiting area and told Julia and Craig that "we got it all, margins are clear" so I expected this to be a simple review.
L DCIS only, close but clear margin, node clear, still stage 0
R 6mm invasive CA as well as DCIS to deep margin only (can't dissect deeper).
Nodes clear. Stage 1-B, still good news. All tumor out!
Giddy Craig about fell off his chair as he breathed a deep sigh of relief. All I focused on was all tumor out, clear margins, clear nodes ... to me, this meant no chemotherapy. My incredibly thick head of hair was saved! Dr. L informed me I'd be referred to an oncologist for additional treatment, if needed, like radiation and hormone therapy. Dr. L wanted to see me back in about three weeks for what would be the one-month post-surgery exam.
My flight departed at 6am the next morning. I was headed to Billings, Montana for the Holiday weekend. My chest was still raw, sore and I was incapable of carrying anything weighing more than a pound or two, max. As I checked in at the counter, I explained my surgery of a week prior, showed the lady my lovely pink tube top and asked her if I could have my friend assist me to the gate. Craig was given a security pass by this kind woman. I was given a medical authorization card and allowed to pre-board the plane. Craig hauled my carry-on bag through security and to the last possible step before the loading ramp. From there, I had to carry it about 100 feet and it was pure torture! There was no way it was going in the overhead compartment. I shoved it under the seat in front of me.
At one point during the weekend, the adults found ourselves downstairs preparing to watch a movie. My sister Caren, her husband Todd, and my mom were all sitting around the couches chit-chatting. We talked about my surgery, pathology results, etc. Todd, being a veterinarian, was intrigued with the concept of the saran-wrap material the surgeon had used in place of steri-strips. I asked him if wanted to see. He looked at his wife, then back to me. I could tell he was mentally debating the moral decency of seeing his sister-in-law's breasts against his intrigue in this mysterious surgical wrap. I told him it was a surgery just like he performs all the time on the animals in his clinic and I had no problem showing anyone what the incisions and wrap looked like. Skin, tissue, blood ... it's the same on humans and animals.
I removed the ugly, pink tube top and displayed my sewn-together, saran-wrapped chest. Caren glanced quickly and didn't comment much. My mother looked, winced, and her face quickly turned to disgust at the sight of my incisions, the dried blood and bandaging. I laughed and rolled my eyes. Todd admired the seemingly well-healing incisions. He didn't see me, the sister-in-law he'd known since I was sixteen years old. Rather, I think the wheels in his head were spinning as he pondered how his practice might be able to utilize this saran-wrap adhesive on their patients. I wonder how many dogs and cats were used in testing it out.
Thursday, March 14, 2013
12. Where Were You?
The nurse pulled apart the Velcro holding my pink tube-top in place. Dr. L had come to check my incisions before releasing me from the hospital that morning. It was the day after my double lumpectomy and I wanted nothing more than to go home and begin my recovery in my own bed at home.
"Oh wow," the nurse commented, obviously quite satisfied with what she discovered. "Those incisions look amazing! He did a marvelous job!" That's great, I thought to myself. When I'm not in so much pain I might appreciate that sentiment. (Note here ... I never did quite agree with the nurse on this matter. More on that topic later.)
Tammie had stopped by, as promised. She gave me words of encouragement and reminded me to give her a call if I needed anything at all. Craig had, meanwhile, gone to fill the prescription for my pain medication (generic Vicodin pills) that I'd need once released from the hospital and off the morphine drip. I asked someone (to this day I can't recall whom) to take a picture of me as I was preparing to get into the wheelchair. (Pictures are my way of keeping memories. The mind may fade one day, but photos will last forever. That is, of course, if printed on acid-free paper, saved to gold CDs or multiple other external media sources.)
Hospital policy required patients to be wheeled downstairs in a wheelchair - no walking oneself to the door - as they were discharged from the hospital. Craig brought my car around to the loading zone. Getting in the car was incredibly painful and I winced with every movement. As a law-abiding citizen, the seat-belt presented a dilemma for me. California state law required the use of seat-belts and safety always comes first; yet, there was no way in hell I could let the seat-belt lay across my recently cut-open chest. I opted to buckle the belt, but held the chest strap away from my protective pink tube-top the entire 20 minute drive home. I was miserable, for then my chest and arm hurt!
Once I was in bed and had taken two pain-pills, I turned on the television. And that's where I was when I learned that Michael Jackson, the King of Pop, had died in an apparent drug overdose. I flipped through station after station after station and each one reported on this one news story. Shocking, of course, is the death of any celebrity, and this death, (though not completely unimaginable and unforeseeable), was seriously upsetting to the American news media. Admittedly, I was interested in hearing the details along with everyone else. Despite the controversies surrounding his personal life and interests, Thriller, Billie Jean, We Are The World, Beat It, Black and White, and the like, were songs with lyrics all members of GenX knew by heart. I watched the reports for hours until I finally slept. I awoke and the news stations hadn't yet changed to coverage of any other story, nor would they for days to follow. June 25th isn't in my memory bank as the day I got home from double lumpectomy surgery. Rather, for me, it's banked as the day Americans and music lovers around the world, lost an icon.
*****
WARNING - THERE ARE A COUPLE GRAPHIC PHOTOS BELOW THAT MAY NOT BE SUITABLE FOR ALL VIEWERS.
(And no, I'm not referring to the ones of me in the hospital bed. Though, those are scary in their own way.)
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| Shortly prior to being released from the hospital. |
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| The only reason I could have possibly been smiling was because the morphine must not yet have worn off. |
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| Right side lumpectomy incision. |
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| Left side lumpectomy incision. See the adhesive keeping me together? I called it saran wrap. |
Thursday, March 7, 2013
11. Say 10! Say 10! She Said 10!
Dr. L called me Monday night with the results of the blood work and genetic testing for the BRCA1 gene. "The results are negative," he said.
"Negative? That's bad, right? Oh, no wait, negative as in good-negative you mean?" I asked.
I did not have the gene (woo-hoo!) and Dr. L wanted to make sure that, considering this news, I still wanted to proceed with the bilateral lumpectomy. Uh, yes please?! Telling me I didn't carry that particular gene was not, in and of itself, going to rid me of the cancer in my chest.
The night prior to surgery, Tammie called me and asked, "Did you change your mind? Are you doing the double mastectomy instead of double lumpectomy?"
"Huh? No. Why? What makes you think that?" I asked.
Tammie was perplexed when she hadn't see my name listed on the next morning's schedule of procedures. Somehow, I had not been scheduled for, or ever informed about, the wire-inserting appointment necessary immediately prior to surgery. Ever vigilant about all her patients' care, Tammie was watching out for me. She added my name to the list for the next morning.
I went to work that Wednesday morning, June 24, 2009 bright and early. My stomach growled with hunger as I wasn't permitted to eat or drink anything prior to surgery. (It was going to be a long day with having to skip my morning Starbucks.) My incredible team of coworkers joined me in wearing matching pink-ribbon t-shirts. All the women in the office, and my not-too-macho-to-wear-pink-in-supporting-Cherí boss, Craig, posed with me for a photo before I left the office. We smiled, as that's what you are supposed to do when having your picture taken, but I doubt any of us was truly in a smiling state-of-mind.
Wire localization is a technique that is used to mark the location of a breast abnormality that is quite small, or that can't be easily found by touch. This procedure ensures greater accuracy for a breast biopsy or lumpectomy. Your surgeon will use the wire as a guide to the tissue that needs to be removed. Your wire localization will be done in the Radiology Department of the hospital or surgical center where your breast biopsy or lumpectomy is scheduled. Mammograms (or in some cases, ultrasound images) must be taken to show the location of the breast abnormality. You will need to undrape the affected breast, and get into position for a mammogram. Special equipment, such as a paddle-shaped compression device may be used during your mammogram. It may be necessary to take several images, in order to find the exact location of your lump or area of concern. Now that images have been taken, and your breast has been numbed, your radiologist will use a very fine needle (smaller than is used for a blood draw) to target your breast abnormality. The tip of this needle must rest in the location that your surgeon needs to find, in order to remove the right tissue. A slender wire will be threaded down through the needle and out of its tip, to lodge at the target tissue. The needle will be removed, leaving the wire in place. Source: http://breastcancer.about.com/od/breastbiopsy/p/wire_localiz.htm
In hindsight, it was probably best I didn't know what this procedure involved before I went in that morning. Tammie was there, though, to help me understand each step and, yes, kept a hand on my shoulder at all times. I left the radiology department, headed out the double doors and across the cross walk to the main hospital. The wire was wrapped around the outside of my breast and tucked inside my tank top. I was certainly glad there were no metal detectors at the hospital entrance.
Registration at the hospital, quite surprisingly, didn't take too long. I provided my government-issued photo identification and my insurance card, paid my $250 hospital visit co-pay, removed all jewelry as instructed and received my hospital wrist-band. The last time I wore one of those I was a seven-pound, fourteen-ounce newborn. I took a seat in the waiting area.
"Sherry?" I heard the nurse call. It was time.
Protector Craig was only allowed so far into the pre-op area. He was now assigned to the hallway. Once inside the staging area and behind curtains, I changed into the provided hospital gown. Tammie joined me after this and was going to keep me company as the nurses began prepping me for surgery. The nurse took my temperature, blood pressure, height and weight. (I missed Keisha. She would have let me skip the scale.)
It was soon time to insert the IV. My left hand seemed the best location or so the nurse claimed. I decided I wouldn't watch her attempt to poke my vein with the needle and instead, I chose to watch Tammie as she watched the nurse. Big mistake. I should have watched the actual needle being prodded into my vein. Lesson learned - Tammie does not have a poker face. The expressions Tammie made caused me to think the nurse was tearing apart my flesh or was about to cut off my left hand. Turns out the nurse just couldn't get the needle in correctly. After two failed attempts at what should have been a seriously simple procedure, the nurse rushed off to find an ER nurse. Apparently those nurses were better able to find the good veins. Well, that nurse failed, too, and they decided to wait and just have the anesthesiologist insert the IV. Kinda wished they had made that decision before their four failed attempts. For the record, it took the anesthesiologist about four seconds to, rather painlessly, insert my IV.
I was wheeled into the final, pre-surgery area where I was adorned with a shower cap styled hair cap, lovely socks and leg pumps (intermittent pneumatic compression).
Intermittent pneumatic compression (IPC) is a treatment that uses an air pump and inflatable leggings to provide pulsing pressure that pushes blood through the veins IPC keeps blood moving through the legs and back to the heart, preventing blood from standing still (when clots are more likely to form).
IPC is used to prevent blood clots in the leg veins in women who are not able to walk, usually after surgery or in the hospital. Source: http://www.hearthealthywomen.org/treatment-and-recovery/pvd-treatment-and-recovery/intermittent-pneumatic-compression-ipc.html
Craig and Tammie came in for a quick hello/good luck/you'll be fine/see you after surgery.
I was ready for surgery, or so I thought. Dr. L had another procedure yet to perform before I was actually wheeled into the operating room.
Often, a blue dye or a small amount of radioactive material will be injected around the nipple area. The material moves to the lymph nodes and helps identify which lymph nodes need to be removed for testing (sentinel lymph node biopsy). Source: http://www.webmd.com/breast-cancer/lumpectomy-partial-mastectomy
Yes, you read that correctly. Not only is the dye injected into the nipple area, it is then "massaged" into the breast to help it spread faster. I shudder as I recall this experience. My right breast was shot-up first and I was, I admit, scared to death knowing Dr. L still had to do the left breast! To this day I question why I had to be awake during that procedure. Hell, the IV was in, just put some sleeping potion in there and then do your poking and massaging!
Julia arrived after I had been sent to the operating room. She and Craig sat patiently in the waiting room for hours. They told me, long after I had recovered, that Dr. L came out to see them during my surgery. He had informed them that surgery went quite well, the cancer was not in the lymph nodes, and all the cancer was out. (More on that fine topic later.)
My eyes fluttered open slowly. I sensed I knew where I was but I couldn't remember exactly. I couldn't move. I was crying. Let's back up for a moment to part ten of this blog journal. Reasons Cherí cries are very limited: 1) my body hurts, 2) my heart hurts, 3) my sisters are making me laugh too much. My heart didn't hurt, I wasn't sad and nobody was anywhere near close to laughing about anything. The crocodile tears shed that late afternoon were solely a result of the excruciating pain my body was feeling. I have not endured natural childbirth, nor will I ever, but I do understand that pain to be the worst pain on Earth. I'll concede to that as I have no personal experience to the contrary on which to argue. However, I'd like it to be made known that the pain felt when one awakes from bilateral lumpectomy with no painkillers in the blood stream, hands-down takes second place. Take my word for it.
I saw Julia standing to my right. I assumed Craig had gone off to the pharmacy to fill prescriptions I would be needing. (Julia has since corrected that assumption by pointing out that Craig was there in the recovery room ... frantically pacing and crying.) I still didn't move. I couldn't. Crying hurt. Every movement your body makes, requires, in some fashion or other, the use of chest and/or surrounding muscles. My muscles and chest had been cut open and sewn back together. My breasts were stitched closed and held in place with a material resembling saran wrap.
The nurse asked me to identify on the pain scale how severe my pain was currently. Julia said I answered a 3 (out of 10, 10 being the worst). The pain was obviously much worse than I identified with my 3, but I was still coming out of the anesthesia and couldn't be held accountable for my actions.
Which is why I can tell you about this next part of the recovery room experience. A friend of mine had sworn to me up and down, left and right, back and forth that come hell or high water, she'd be there for my surgery. Well, she wasn't. She missed it. I don't recall much about what I said during my recovery, but Julia has reminded me multiple times that I repeated over and over and over the following phrase: "If I was a (expletive) horse she'd be here!" It was anger. I was mad she didn't make my surgery a priority. But, that's how life goes sometimes. Things come up, plans change and you have to just deal with it. You have to learn to get over it. And I did that. Apologies and amends were made and life moved on.
Julia stepped behind the nurse, out of sight, and held up 10 fingers. "Say ten, say ten," she mouthed silently at me. I must have mumbled out "ten" for the next thing I knew Julia yelled at the nurses station, "She said ten! She said ten! I heard her say ten!"
The nurses, after hearing Julia's threatening tone, confirmed with me that I had, indeed, said my pain was at level ten. As if my tears and painful expressions were not enough, I added a simple, quiet, yes. The nurse said that she would have to contact the surgeon to see if they could give me a Vicodin. Again, you read that correctly. Singular Vicodin. One pill. Hell, they give you a Vicodin these days when you have a hang-nail. What does one have to have ripped, mangled and extracted from one's body to qualify to receive something a tad stronger in terms of pain relief?
Request for one Vicodin approved, pill taken, I still couldn't move. The tears flowed freely. Julia told me the nurse said it would take about twenty minutes for it to work. And thus the countdown began.
"We can do this," Julia cheered me on. "Nineteen more minutes. Here, check out this picture of McDreamy in this magazine. Isn't he so cute? There's a story about him. Okay, look, good, we're at sixteen minutes. You can do this. Easy. Fifteen minutes and you'll be all good. Look how hot McDreamy looks here! Half way there, ten minutes. Feeling any relief yet? Five minutes, come on, you can do it. Hang in there, do it for McDreamy! Just two more minutes!"
Twenty minutes came and went and I still sat motionless, tears streaming down my cheeks now soaking the pillow. Every breath pained me incredibly. I didn't dare start sobbing for that would only make matters worse. (Could it get worse, truly?)
My person sprang into even more fierce action with the nurses. (It was similar to a mother lion protecting her young, vulnerable cub. Hurt the cub, fear the wrath of the mother lion. In this case, with a friend just as vulnerable and in misery, the same level of needed protection can apply.) She insisted that they check on me and yes, they too could see their magical little pill wasn't quite so magical. They paged the surgeon. He agreed to admit me for the night for pain management. (Yep, their original plan was to send me home that evening!) I was wheeled into a room with Craig and Julia at my side. Still not completely free of the anesthesia, I repeatedly asked Julia to call Tammie.
"Tammie? Who is Tammie? I don't know a Tammie! I don't have a number for a Tammie. She's not on the list." Subconsciously, I must have felt that Tammie could be of some additional help and comfort as she works in the medical industry and has been through this battle personally herself. Tammie arrived shortly thereafter, still soaking wet in her swimsuit. She had jumped out of the pool, left her husband and best friend there in the pool and came to visit me. She stayed a short while and promised to come back the next morning before I was released. I really do have amazing friends.
I hadn't yet received morphine, but it was promised to be on its way. Craig felt it was safe for Julia to leave as she'd been there for hours and had been an incredible friend and support. Julia left the hospital and proceeded to get completely lost en route home. (To this day, she blames and hates the damned back roads of stupid Woodland.) Once home, she locked herself in the upstairs bathroom of her house. In the many years of our friendship, Julia had never once seen me cry. She had never seen me in pain. That day, however, she saw me endure complete physical torture and it was just too much. She was traumatized. Her husband knew well enough, though, to leave her be. She'd come out of the bathroom when she was ready. And she did ... three hours later.
Finally, after what seemed like hours, I was given a morphine drip and a button I could push to send a shot of that morphine through my body when needed. (However, they do have automated restrictions on how often the morphine can be released. Why they hell, then, do they give you the button? I needed the morphine more than once an hour on the hour!) Once the morphine took a slight edge off the pain, Craig called it a day and went home. I remained in tiny hospital room, IV line in my vein, television on low volume and my cell phone within fingers' reach. The tears had stopped, but the pain remained. It still hurt terribly to move, but I could safely say the pain level dropped from a ten to a solid eight. Significant improvement. I spent that night in the hospital getting very little rest. I was in a room next to the nurses station where all sorts of commotion occurred throughout the night. The patient in the room next to me screamed randomly and consistently through the night. (The nurses did apologize for this.) The machines beeped and buzzed constantly. And I still hurt. I couldn't pull up the covers for fear of pain. I couldn't adjust my pillow for fear of pain. I just didn't move. It's amazing what the fear of pain can do to you ... I made it a good ten hours before I finally called for the nurse and asked for assistance to the bathroom. Every step there hurt like hell and I promised myself that was the only time I was going to get up out of that bed!
"Negative? That's bad, right? Oh, no wait, negative as in good-negative you mean?" I asked.
I did not have the gene (woo-hoo!) and Dr. L wanted to make sure that, considering this news, I still wanted to proceed with the bilateral lumpectomy. Uh, yes please?! Telling me I didn't carry that particular gene was not, in and of itself, going to rid me of the cancer in my chest.
The night prior to surgery, Tammie called me and asked, "Did you change your mind? Are you doing the double mastectomy instead of double lumpectomy?"
"Huh? No. Why? What makes you think that?" I asked.
Tammie was perplexed when she hadn't see my name listed on the next morning's schedule of procedures. Somehow, I had not been scheduled for, or ever informed about, the wire-inserting appointment necessary immediately prior to surgery. Ever vigilant about all her patients' care, Tammie was watching out for me. She added my name to the list for the next morning.
I went to work that Wednesday morning, June 24, 2009 bright and early. My stomach growled with hunger as I wasn't permitted to eat or drink anything prior to surgery. (It was going to be a long day with having to skip my morning Starbucks.) My incredible team of coworkers joined me in wearing matching pink-ribbon t-shirts. All the women in the office, and my not-too-macho-to-wear-pink-in-supporting-Cherí boss, Craig, posed with me for a photo before I left the office. We smiled, as that's what you are supposed to do when having your picture taken, but I doubt any of us was truly in a smiling state-of-mind.
Wire localization is a technique that is used to mark the location of a breast abnormality that is quite small, or that can't be easily found by touch. This procedure ensures greater accuracy for a breast biopsy or lumpectomy. Your surgeon will use the wire as a guide to the tissue that needs to be removed. Your wire localization will be done in the Radiology Department of the hospital or surgical center where your breast biopsy or lumpectomy is scheduled. Mammograms (or in some cases, ultrasound images) must be taken to show the location of the breast abnormality. You will need to undrape the affected breast, and get into position for a mammogram. Special equipment, such as a paddle-shaped compression device may be used during your mammogram. It may be necessary to take several images, in order to find the exact location of your lump or area of concern. Now that images have been taken, and your breast has been numbed, your radiologist will use a very fine needle (smaller than is used for a blood draw) to target your breast abnormality. The tip of this needle must rest in the location that your surgeon needs to find, in order to remove the right tissue. A slender wire will be threaded down through the needle and out of its tip, to lodge at the target tissue. The needle will be removed, leaving the wire in place. Source: http://breastcancer.about.com/od/breastbiopsy/p/wire_localiz.htm
In hindsight, it was probably best I didn't know what this procedure involved before I went in that morning. Tammie was there, though, to help me understand each step and, yes, kept a hand on my shoulder at all times. I left the radiology department, headed out the double doors and across the cross walk to the main hospital. The wire was wrapped around the outside of my breast and tucked inside my tank top. I was certainly glad there were no metal detectors at the hospital entrance.
Registration at the hospital, quite surprisingly, didn't take too long. I provided my government-issued photo identification and my insurance card, paid my $250 hospital visit co-pay, removed all jewelry as instructed and received my hospital wrist-band. The last time I wore one of those I was a seven-pound, fourteen-ounce newborn. I took a seat in the waiting area.
"Sherry?" I heard the nurse call. It was time.
Protector Craig was only allowed so far into the pre-op area. He was now assigned to the hallway. Once inside the staging area and behind curtains, I changed into the provided hospital gown. Tammie joined me after this and was going to keep me company as the nurses began prepping me for surgery. The nurse took my temperature, blood pressure, height and weight. (I missed Keisha. She would have let me skip the scale.)
It was soon time to insert the IV. My left hand seemed the best location or so the nurse claimed. I decided I wouldn't watch her attempt to poke my vein with the needle and instead, I chose to watch Tammie as she watched the nurse. Big mistake. I should have watched the actual needle being prodded into my vein. Lesson learned - Tammie does not have a poker face. The expressions Tammie made caused me to think the nurse was tearing apart my flesh or was about to cut off my left hand. Turns out the nurse just couldn't get the needle in correctly. After two failed attempts at what should have been a seriously simple procedure, the nurse rushed off to find an ER nurse. Apparently those nurses were better able to find the good veins. Well, that nurse failed, too, and they decided to wait and just have the anesthesiologist insert the IV. Kinda wished they had made that decision before their four failed attempts. For the record, it took the anesthesiologist about four seconds to, rather painlessly, insert my IV.
I was wheeled into the final, pre-surgery area where I was adorned with a shower cap styled hair cap, lovely socks and leg pumps (intermittent pneumatic compression).
Intermittent pneumatic compression (IPC) is a treatment that uses an air pump and inflatable leggings to provide pulsing pressure that pushes blood through the veins IPC keeps blood moving through the legs and back to the heart, preventing blood from standing still (when clots are more likely to form).
IPC is used to prevent blood clots in the leg veins in women who are not able to walk, usually after surgery or in the hospital. Source: http://www.hearthealthywomen.org/treatment-and-recovery/pvd-treatment-and-recovery/intermittent-pneumatic-compression-ipc.html
Craig and Tammie came in for a quick hello/good luck/you'll be fine/see you after surgery.
I was ready for surgery, or so I thought. Dr. L had another procedure yet to perform before I was actually wheeled into the operating room.
Often, a blue dye or a small amount of radioactive material will be injected around the nipple area. The material moves to the lymph nodes and helps identify which lymph nodes need to be removed for testing (sentinel lymph node biopsy). Source: http://www.webmd.com/breast-cancer/lumpectomy-partial-mastectomy
Yes, you read that correctly. Not only is the dye injected into the nipple area, it is then "massaged" into the breast to help it spread faster. I shudder as I recall this experience. My right breast was shot-up first and I was, I admit, scared to death knowing Dr. L still had to do the left breast! To this day I question why I had to be awake during that procedure. Hell, the IV was in, just put some sleeping potion in there and then do your poking and massaging!
Julia arrived after I had been sent to the operating room. She and Craig sat patiently in the waiting room for hours. They told me, long after I had recovered, that Dr. L came out to see them during my surgery. He had informed them that surgery went quite well, the cancer was not in the lymph nodes, and all the cancer was out. (More on that fine topic later.)
My eyes fluttered open slowly. I sensed I knew where I was but I couldn't remember exactly. I couldn't move. I was crying. Let's back up for a moment to part ten of this blog journal. Reasons Cherí cries are very limited: 1) my body hurts, 2) my heart hurts, 3) my sisters are making me laugh too much. My heart didn't hurt, I wasn't sad and nobody was anywhere near close to laughing about anything. The crocodile tears shed that late afternoon were solely a result of the excruciating pain my body was feeling. I have not endured natural childbirth, nor will I ever, but I do understand that pain to be the worst pain on Earth. I'll concede to that as I have no personal experience to the contrary on which to argue. However, I'd like it to be made known that the pain felt when one awakes from bilateral lumpectomy with no painkillers in the blood stream, hands-down takes second place. Take my word for it.
I saw Julia standing to my right. I assumed Craig had gone off to the pharmacy to fill prescriptions I would be needing. (Julia has since corrected that assumption by pointing out that Craig was there in the recovery room ... frantically pacing and crying.) I still didn't move. I couldn't. Crying hurt. Every movement your body makes, requires, in some fashion or other, the use of chest and/or surrounding muscles. My muscles and chest had been cut open and sewn back together. My breasts were stitched closed and held in place with a material resembling saran wrap.
The nurse asked me to identify on the pain scale how severe my pain was currently. Julia said I answered a 3 (out of 10, 10 being the worst). The pain was obviously much worse than I identified with my 3, but I was still coming out of the anesthesia and couldn't be held accountable for my actions.
Which is why I can tell you about this next part of the recovery room experience. A friend of mine had sworn to me up and down, left and right, back and forth that come hell or high water, she'd be there for my surgery. Well, she wasn't. She missed it. I don't recall much about what I said during my recovery, but Julia has reminded me multiple times that I repeated over and over and over the following phrase: "If I was a (expletive) horse she'd be here!" It was anger. I was mad she didn't make my surgery a priority. But, that's how life goes sometimes. Things come up, plans change and you have to just deal with it. You have to learn to get over it. And I did that. Apologies and amends were made and life moved on.
Julia stepped behind the nurse, out of sight, and held up 10 fingers. "Say ten, say ten," she mouthed silently at me. I must have mumbled out "ten" for the next thing I knew Julia yelled at the nurses station, "She said ten! She said ten! I heard her say ten!"
The nurses, after hearing Julia's threatening tone, confirmed with me that I had, indeed, said my pain was at level ten. As if my tears and painful expressions were not enough, I added a simple, quiet, yes. The nurse said that she would have to contact the surgeon to see if they could give me a Vicodin. Again, you read that correctly. Singular Vicodin. One pill. Hell, they give you a Vicodin these days when you have a hang-nail. What does one have to have ripped, mangled and extracted from one's body to qualify to receive something a tad stronger in terms of pain relief?
Request for one Vicodin approved, pill taken, I still couldn't move. The tears flowed freely. Julia told me the nurse said it would take about twenty minutes for it to work. And thus the countdown began.
"We can do this," Julia cheered me on. "Nineteen more minutes. Here, check out this picture of McDreamy in this magazine. Isn't he so cute? There's a story about him. Okay, look, good, we're at sixteen minutes. You can do this. Easy. Fifteen minutes and you'll be all good. Look how hot McDreamy looks here! Half way there, ten minutes. Feeling any relief yet? Five minutes, come on, you can do it. Hang in there, do it for McDreamy! Just two more minutes!"
Twenty minutes came and went and I still sat motionless, tears streaming down my cheeks now soaking the pillow. Every breath pained me incredibly. I didn't dare start sobbing for that would only make matters worse. (Could it get worse, truly?)
My person sprang into even more fierce action with the nurses. (It was similar to a mother lion protecting her young, vulnerable cub. Hurt the cub, fear the wrath of the mother lion. In this case, with a friend just as vulnerable and in misery, the same level of needed protection can apply.) She insisted that they check on me and yes, they too could see their magical little pill wasn't quite so magical. They paged the surgeon. He agreed to admit me for the night for pain management. (Yep, their original plan was to send me home that evening!) I was wheeled into a room with Craig and Julia at my side. Still not completely free of the anesthesia, I repeatedly asked Julia to call Tammie.
"Tammie? Who is Tammie? I don't know a Tammie! I don't have a number for a Tammie. She's not on the list." Subconsciously, I must have felt that Tammie could be of some additional help and comfort as she works in the medical industry and has been through this battle personally herself. Tammie arrived shortly thereafter, still soaking wet in her swimsuit. She had jumped out of the pool, left her husband and best friend there in the pool and came to visit me. She stayed a short while and promised to come back the next morning before I was released. I really do have amazing friends.
I hadn't yet received morphine, but it was promised to be on its way. Craig felt it was safe for Julia to leave as she'd been there for hours and had been an incredible friend and support. Julia left the hospital and proceeded to get completely lost en route home. (To this day, she blames and hates the damned back roads of stupid Woodland.) Once home, she locked herself in the upstairs bathroom of her house. In the many years of our friendship, Julia had never once seen me cry. She had never seen me in pain. That day, however, she saw me endure complete physical torture and it was just too much. She was traumatized. Her husband knew well enough, though, to leave her be. She'd come out of the bathroom when she was ready. And she did ... three hours later.
Finally, after what seemed like hours, I was given a morphine drip and a button I could push to send a shot of that morphine through my body when needed. (However, they do have automated restrictions on how often the morphine can be released. Why they hell, then, do they give you the button? I needed the morphine more than once an hour on the hour!) Once the morphine took a slight edge off the pain, Craig called it a day and went home. I remained in tiny hospital room, IV line in my vein, television on low volume and my cell phone within fingers' reach. The tears had stopped, but the pain remained. It still hurt terribly to move, but I could safely say the pain level dropped from a ten to a solid eight. Significant improvement. I spent that night in the hospital getting very little rest. I was in a room next to the nurses station where all sorts of commotion occurred throughout the night. The patient in the room next to me screamed randomly and consistently through the night. (The nurses did apologize for this.) The machines beeped and buzzed constantly. And I still hurt. I couldn't pull up the covers for fear of pain. I couldn't adjust my pillow for fear of pain. I just didn't move. It's amazing what the fear of pain can do to you ... I made it a good ten hours before I finally called for the nurse and asked for assistance to the bathroom. Every step there hurt like hell and I promised myself that was the only time I was going to get up out of that bed!
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| My Sutter Printing Family - Becky, Kathy, Craig, Susanne, Bridgit, Janice |
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| Recovery ... can you see the pain??? |
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