Wednesday, February 25, 2015

Like the Drip, Drip, Drip of the Hourglass...

Yesterday was my first chemotherapy. So far so good. They gave me some benedryl first, which is supposed to lessen the possibility of being allergic to the drug, but it mainly made me sleepy. Blood is drawn from the same port where the chemo goes in, and that worked well. Also, the doctor ordered a bone-strengthening injection once a month while I'm doing chemo, and that was the most painful part of the whole process.

Talking to the doctor before the treatment began, we learned that he had again changed both the type of drug and the way it will be administered. When we had the chemo class the day before, the nurse said Dr. C had changed the plan from one treatment every three weeks to twelve weekly treatments. Yesterday he said it's going to be three weeks of treatment, then one week off, until I have all twelve. That takes us into June. That said, we will still assess as we go along to determine if that plan needs to be altered. It's going to be fluid (pardon the pun) and uncertain from now on. Like Lainie, the breast cancer survivor in my new book, I've decided to have cancer one day at a time.

Reading more about breast cancer, I learned that the type I have--inflammatory--is uncommon and rare in women my age. It almost made me feel special to learn that. However, when diagnosed, it's automatically at stage III or IV. That's not so special. From the PET scan we learned that mine has been seeding other sites as well--my right shoulder blade, left public bone, lower sternum, and liver have cancer spots, in addition to the breast itself and nearby lymph glands. (Fortunately it hasn't gone to heart or brain.) When chemotherapy attacks those spots, it actually strengthens the bone. What that all means is that we can kill a lot of the cancer with chemo and manage the rest. Surgery is still likely--but maybe not until June--as is more chemo, and radiation isn't out of the picture for later on, but that will depend on how the chemo works. I feel confident as the Utah Cancer Clinic has a close working relationship with the Huntsman Cancer Institute in Salt Lake City.

One outcome of the change in the chemo attack plan is that this drug doesn't have so many side effects. I'll still lose my hair and be tired a lot, and may get mouth sores, but I'm hoping to avoid the vomiting and diarrhea that plague so many cancer victims. Having a one-week break after every third treatment will be helpful I'm sure.

In other good news, the cellulitis on my legs has stopped weeping with the Unna boot treatment. I will continue with that until the redness goes away. It's actually helping because Unna boots provide needed compression, but with the added bulk on my feet, I can't wear regular shoes. Tradeoffs!

Some very nice volunteers came around the clinic yesterday with Kneader's sandwiches at lunch time--heavenly--and then brought me a goodie bag that included bean bags I can heat in the microwave to warm my feet or neck, some soaps and lotions, and a lovely warm throw. I can put a hospital-heated blanket on and then the throw to preserve the warmth. I tend to be cold all the time--typically wear several layers of clothes--so this bit of thoughtfulness is especially appreciated. It's from a breast cancer survivor and her mother. People are just so nice!

Best news of the day: doctors at the fertility clinic have now transplanted two embryos, so it looks like we will have one of two more grandchildren by the end of the year. We are grateful for our brave son and daughter-in-law who have shown such courage through this process--and the Big Sister will be two in December.

I decided to put a wreath on my front door when I'm up to seeing visitors, so if you drive by and see the wreath, stop in and say hello.

And I think my book, What Took You So Long, may be out on the shelves wherever Deseret Books are sold. If you get one, bring it by and I'll sign it for you.


Monday, February 23, 2015

Tick Tock

Remember the White Rabbit in Alice in Wonderland? He carried a big pocket watch all the time and kept saying, "I'm late for a very important date!" That's kind of how I feel, and yet today is dragging by. That could possibly be because I was awake at four. We had some errands this morning but I took a little nap later and feel great now.

This morning I started the pre-chemo process. I have to take a steroid twice a day, on the day before chemo, the day of, and the day after. My port isn't swollen anymore, as it was for a couple of days right after the implant, so it'll be ready for the first chemo session tomorrow. I have to rub a lidocaine cream on the site in the morning to prepare for that.

This afternoon I'm going to a class at the cancer clinic with my entourage (hubby and daughter) to learn how to use the five other prescriptions Dr. C gave me to deal with chemo and its side effects. If I don't see the oncologist today, I will tomorrow for sure, and we'll talk more about the PET scan results.

Saturday I got a "Get Well" card from the kind and skilled pre-op and OR staff at the hospital. Yeah. Get well for sure. I intend to.

Good news: My pedicure Friday was divine. No low lights and soft music at this place--the girl has to see my feet, after all--but I'm grateful for that service. After two months my feet were getting kind of gross. She is a sweet and loving person.

Other good news: the cellulitis on my legs is no longer weeping. It felt so good to be able to wear normal shoes over the weekend, but I got Unna boots again this morning to continue the healing process, so I'm back to the bedroom slippers that are cruddy with zinc oxide residue from the Unna boots. It's possible the chemo will speed up the healing process.

Or not. We'll see what tricks these chemicals are going to play on me.


Saturday, February 21, 2015

SCAN-dalous

When the oncologist said we needed a PET scan to really diagnose the extent of my cancer, he said it involved injecting a sugar dye into my system. Then the scanner could detect where the cancer had gone in my body. I accepted that, knowing it was important for Dr. C to have all the available information before he could recommend the most effective chemo cocktail. I forgot to ask about how the procedure is done. All they told me was to eat high protein and low carb the day before (which is what I do anyway) and not to get any exercise (which is what I do anyway).

Arriving at the imaging center, I checked in and hubby was told to come back for me in two-and-a-half hours. Whoa. So this is not like standing in front of an x-ray machine for a couple of minutes and holding your breath for a few seconds. A nice technician called me into the inner sanctum, took me to a room to insert an IV into my right arm. He explained that the radioactive sugar dye goes in there, and then we wait 60 or 70 minutes for it to pump through my system before he would put me into the scanner and start taking pictures.

"Well, I'm glad I brought a  book," I told him. I always have a book. I hate to be left with nothing to occupy my brain.

"No," he said, "you need to just sit here and relax. You can sleep if you want, but no reading." He said a teenage boy who came in for this test spent the hour texting on his phone, and the scan showed the muscles in his forearms were "hot," thus skewing the outcome. So... "no book for you," ala Soup Nazi.

Then he gave me a tracer in a bottle of Crystal Lite so the scan could detect what's in my digestive tract. That's why I wasn't supposed to eat for six hours before the test. Nasty stuff. Once I got comfortable in the reclining chair, I realized there was a cold air vent right over my head, and I didn't want the scan to just show pictures of me being annoyed for an hour. So I covered myself with the blanket conveniently left on the side table. Not enough, but that nice technician brought two others. We'd need them later when he put me on the scanner, he explained. Finally I settled on visions of a Zen garden (thanks to the culture section of the Japanese category of Travel Pop) and eventually drifted off to sleep.

After a trip to the bathroom (yes, that's part of the protocol, a natural consequence of the Crystal Lite), I was strapped tightly into the scanner to hold me immobile for 35 minutes of joy-riding back and forth while it took 1500-1800 pictures. I kept my eyes closed to avoid claustrophobia and more easily imagine things that could help me avoid thinking about my itchy nose. PET is positron emission tomography. Sounds so Star Trek. It takes 3-D cross-section images and pinpoints metastasis. Pretty complex gadget. No wonder a PET scan costs $9000.

Then my husband rescued me from the radioactive monster and took me to lunch.

By the way... in case you're tempted to invite me... I have a policy of not playing computer games with anybody but my daughters. That's just enough diversion but not too much obsession for me, thank you very much.

Thursday, February 19, 2015

Hurry Up and Wait

I went into the American Fork Hospital yesterday for a 45-minute minor surgical procedure, and left seven hours later. It all started with misinformation.

When the surgeon said we'd do this procedure--installing a port where the chemo can be dripped--it seemed like an easy thing. With this little device, blood samples can be taken and chemo can be administered in the same spot without so many pokes with needles. It's snuggled up next to my right collarbone, and has a small tube that goes up to a vein in my neck, requiring another small incision. But I'm ready for chemo now, which starts Tuesday, and depending on the results of chemo and follow-up surgery, it'll be in place if I have to have more chemo later. I'm told it takes about 15 minutes and local anesthetic to remove the device when I don't need it anymore.

We reported on time--at 7:30 a.m.--to the surgical services floor of the hospital, waited nearly an hour, and then as I was getting prepped, the charge nurse came in with abject apologies, saying he had misread the schedule and the person calling patients about the timing of surgeries had been given the wrong information. We could have come later because the surgeon had a meeting mid-morning and couldn't get to me until later anyway. He handed Roger a coupon good for $5 in the cafeteria. When he went down there for his mid-morning snack, Roger ordered a cheeseburger and got a croissant breakfast sandwich. More zigging and zagging. But we always carry books to read so we don't get stuck with People Magazine, or Sports Illustrated, or (horror of horrors) daytime television. We both read quite a few pages.

A chest x-ray, EKG, and blood samples taken, and at last they were ready for me. Sleepy-bye juice inserted into the IV, a metallic taste in my mouth, and on the way to the OR I was out. Then somebody was telling me to wake up. My throat and neck were sore. We didn't leave the hospital until after 2 p.m. because I wasn't waking up to their satisfaction. I capitulated when the nurse insisted I should have some caffeine. Normally for me that's a no-no. I just don't like what carbonated drinks do to me. But I took a few sips and Roger had the rest. Finally I was awake enough to go home. Having not had anything to eat all day, I wanted to stop on the way for something to eat.

At home I took a two-hour nap. That'll show 'em. I just needed to sleep it off.

Best part of the day: removing the medicated cellulitis wraps on my legs, having a shower and shampooing my hair. Second best part of the day: daughter came over and fixed my floppy hair.

Today's diagnostic test, a PET scan, determines which chemo cocktail I'll get. Monday I go for a chemo class to learn how to use the five prescriptions the oncologist gave me for managing the side effects. On the whole, I'd rather be promoting my new book.

Tuesday, February 17, 2015

Needled

A gekko is a small lizard, usually about six inches long, that lives in tropical climates. It has little suction cup pads on its paws that let it climb anything vertically and even scamper across ceilings. We encountered these everywhere when we lived on Guam. Gekkos have the unique capability of escaping capture by shedding their tails and growing new ones. In fact I rescued my husband from a ferocious gekko one morning in the shower. He got in, closed the curtain and turned on the water, then felt something crawling up his leg. Without his glasses he couldn't see, so he yelled at me. I brought a container to trap the thing and threw it out the back door. A day in the life of superwoman.

Yesterday, lying on a table at the hospital mammography unit with a radiologist standing next to me, I thought about gekkos. With my left breast under scrutiny of an ultrasound, and then invaded by a needle to retrieve a tissue sample of the offending lump, it seemed ironic to give so much attention to something I'm going to lose anyway. Yes, it's still useful for pinpointing the diagnosis, but I mused that it would be nice if women could re-grow that specialized feminine tissue after cancer treatment, like a gekko re-grows a tail.

If you've never had a deep tissue biopsy, it's a curious experience. A technician with a transducer locates the cancer blob, and the radiologist inserts a hollow needle into it. This specialized needle has a tip that can open, harvest a tissue sample, then cut it off and close. To draw the sample out of the needle, the radiologist uses a small vacuum device that sucks up the sample into a lab jar for later analysis. It took probably 15 or 20 minutes. I didn't feel it very much, but later as the numbing effects wore off, I felt a twinge or two. Not bad.

Ultrasound, needle biopsy, mammogram. Check. Oncologist today, port implanted tomorrow for delivery of the drugs, PET scan Thursday, and chemo starts Tuesday. I even get to have a shower tonight, an activity I've had to suspend for a few weeks while the cellulitis on my legs is being treated with medicated wraps that can't get wet. News flash: spit baths are a highly unsatisfactory alternative.

In the midst of all this poking and prodding, there is a bright spot on Friday: a pedicure. Ahhhhh.

Saturday, February 14, 2015

The Storm Before the Calm

Every week I look forward to the Sabbath for the spiritual "R&R" it always is. It gets me out of the usual routine, gives me something new to think about and ponder, and lets me renew love and friendship with my wonderful neighbors. This week is especially welcome because starting on Monday, it's a race to get everything in place before the first chemo treatment on February 24.

Monday is an ultrasound and needle biopsy, Tuesday is my second visit with the oncologist who will talk about results of the ultrasound, biopsy and MRI, Wednesday the port will be inserted next to my right collarbone for delivery of the chemo cocktail, and Thursday I have a PET scan to determine if the cancer has spread further than the breast.

Friday is just for me--I finally get the pedicure I've been putting off for a month. During all this time I've been treated for cellulitis, an infection on my legs characterized by weeping sores. It wasn't healing as fast as the dermatologist thought it would, and now he thinks that might be a result of the presence of the cancer. Treatment for cellulitis means wrapping the wound from just above the toes to just below the knee, first is gauze saturated with zinc oxide, then with a layer of cotton, and finally with a bandage to keep it all together. And it really itches under all that wrapping.

Consequently, I have had to wear these awful black backless slippers because my wrapped feet wouldn't fit in shoes, and I couldn't get them wet, which meant I couldn't take a bath. Not gonna lie--I'm here to tell you spit baths are highly unsatisfactory. This week, prior to the PET scan, I will remove the wraps (known to dermatologists and cellulitis sufferers as unaboots), and then I'll be able to sit in the shower till the water runs cold, and soak in the foot bath for my pedicure.

Through all of this, I've been going steady with a wheeled walker because the injured muscle in my left thigh, way up there in the groin with the adductor group, has been so slow to heal, despite several weeks of therapy. All I need now is shingles, or hang nails, or warts on my feet. Oh, wait. I had those, too, but the dermatologist shaved them off before the unaboot was reapplied.

For months now I've looked forward to going to the annual writers conference in Phoenix, schmoozing with friends, and who couldn't use a little dose of Phoenix in February--right? I kept hoping things would smooth out, but getting the pre-authorization for the PET scan took so long I ran out of days to schedule medical procedures. So I had to cancel the flight, the hotel, the conference, AND the launch of my new book. With or without me, however, you'll soon find 'What Took You So Long' in stores where Deseret Books are sold.

Oh, and there's one more thing. Our daughter-in-law is getting ready to do another in vitro implant the following week (23rd--) so they can get a baby this year. We don't know which day yet, but they're doing that in Provo, so they will be staying in our guest room where she can have bed rest for a few days after the implant, and the Most Wonderful Daughter in the World, who lives two streets away, will be bring food, regale us with her wit, and take care of the darling 14-month-old toddler so the sickies can rest. I will be glad to have them here.

Then the chemo begins on the 24th, four doses, one every three weeks, which takes us to the end of April. Three weeks later I'll have the surgery to remove the tumor. I'm told a radical mastectomy isn't what it used to be. They don't take chest, shoulder or arm muscles the way they used to, and there isn't a lot of pain involved. I'll be hospitalized two nights maximum. I've always recovered quickly from previous surgeries and hope this battered body doesn't fail me now because...

In the meantime, my wonderful children have found the best possible way to distract me--planning a vacation for July at a beach house on the Oregon coast, my favorite place on earth. We have been looking at websites for a rental that can sleep at least 12 people. I studied a few before I had the MRI the other day, and while the machine clanked away, I was dreaming of the place I love best. Just hope I'll be ready to travel in July.

Sometimes, with all of this Stuff Going On, I feel like poor beleaguered Job. Therefore, I really need this sabbath. I have many blessings to be grateful for, but so much strength to seek for what's to come. It's my weekly search for serenity, and this time it's the calm before the storm of the next eventful few days.

Thursday, February 12, 2015

A Burble Through the Tulgey Wood

This whole cancer thing has felt a lot like an Alice in Wonderland interlude until today when I consulted with the surgeon who is going to perform the mastectomy in May, about three weeks after my last dose of chemo.

Dr. T. examined said breast and interpreted the results of the infamous MRI of yesterday's post. I like her a lot. I immediately felt that she cared about me, and she had already consulted with Dr. C., the oncologist, as well as the radiologist who interpreted the MRI.

It's a fairly large tumor, as tumors go--about 1"x2"--and has a few "fingers" that want to reach out and involve more tissue. However, chemo treatment has a dramatic effect on reigning that in and making the borders easier to get when it's time for surgery. That's the word she used--dramatic. That means there won't be so much to remove, but there are a lot of secondary glands involved that have betrayed me and will have to go. She also said there's not a lot of pain involved, and my hospital stay will be one or two nights maximum. That's good; my family won't have to smuggle in so much real food.

All week something Jesus said in the Sermon on the Mount has been running through my mind: "If thine eye offend thee, pluck it out and cast it from thee..."

I still face another dilemma however: lopsidedness. That's because the kind of cancer I have is not the kind that lends itself easily to reconstruction. Breasts are supposed to be a balanced, matched set, which means I will probably have reduction surgery on the other side so I won't walk around listing starboard.

Before I start chemo on the 24th, Dr. T. will implant a port near my right collarbone, through which Dr. C. can insert the chemo cocktail, and from which blood samples can be taken to monitor the chemo. That eliminates the need for so much poking with needles during the chemo treatment period. Implantation of the port is an outpatient procedure scheduled for the 18th.

Dr. T. allayed some of my fears about chemo. She said it has fewer side effects than it did 15 or 20 years ago, mostly fatigue and hair loss. Well, that'll save me a little on the Personal Upkeep budget, but I'll miss my hairdresser friends. Bottom line: this cancer is highly treatable and the prognosis is excellent.

In other words, I can live with that.

Wednesday, February 11, 2015

My "Musical" Morning

Spent the morning at the imaging center getting an MRI--magnetic resonance image of afflicted body parts that need attention. This diagnostic test uses magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body. It often provides different information than can be obtained from a CAT scan or other kinds of imaging.

If you've never had an MRI, think John Cage music--an avante garde composer for whom such items as a watering can, a blender, a bathtub, a pop gun, a rubber ducky, and a mechanical fish are musical instruments. To Cage, any sound is music, and an MRI is full of buzzes, whistles, toots, and percussion-like racket. On the whole I'd rather listen to Mahler or Beethoven. I was grateful for the earplugs the technician gave me to protect my hearing.

After about an hour of preliminaries, I was finally placed in the machine face down with my arms above my head, not easy for someone with arthritic shoulders. Picture being strapped onto a rack, something like poor Westley in The Princess Bride. Forty minutes later the "music" stopped and I was liberated.

What occupied my mind while the machine pounded, blared, and crackled? For a while I sang hymns, and for a while I pondered a picture I'd seen in the lobby, a stream in the foreground running into a distant forest, a branch of it going off to the left, and a sinking sun in the distance. It reminded me of the Robert Frost poem, The Road Not Taken... "Two roads diverged in a yellow wood..." Somehow it wouldn't have worked if he'd been following a stream. I can't imagine "A stream diverged in a yellow meadow..." being as powerful as what Frost wrote.

Ah, the irony! My life is full of it just now, and this is all the pondering I can take for one afternoon.

One test down, two to go, prognosis to come when I get deeper into the yellow wood.




Saturday, February 7, 2015

2015: The Year of the Cure

Irony is seeping through my life right now like a leaky faucet. I've just been diagnosed with breast cancer, and my book What Took You So Long will come off the press next Tuesday featuring a main character, Lainie, who is a breast cancer survivor. I had to learn all about it to write about it, but I only had to learn generalities. Now I'm learning specifics.

Lainie's cancer was in her left breast. So is mine. Hers was about the size of a golf ball. So is mine. She had chemotherapy to shrink the tumor prior to surgery. That's the oncologist's plan for me. Lainie defiantly shaved her head before the chemo had a chance to kill it, but I think I'll just start collecting hats.

Because I don't have pains elsewhere or swollen glands under my arms, it looks like it might be a slow-growing type of cancer. That would be the good news. Until I have further diagnostic exams next week and we know the extent of it so the doctor can establish a treatment plan, that's all I know right now. Chemo will probably be four doses, one every three weeks, starting at the end of February and concluding at the end of April, which means surgery will be in May. I may have to have more chemo after that, and possibly radiation treatments, but we won't know until then.

Until things shake out a little more I'm going to follow Lainie's advice. She loves life and appreciates every day, even a bad one. She had a loving and supportive family and friends; so do I. Lainie found something stubborn inside that kept her going. So did I. She knew that stubborn something was going to win. So do I.

Wednesday, February 4, 2015

Getting the Call

A phone call Tuesday morning stopped my world, or at least slowed it down a little. You tend to put other things on hold when you hear the doctor say "adenoma carcinoma."

Other things become less important, and it's suddenly easier to determine priorities. Fortunately, my book, What Took You So Long, had already gone to press, except for a few back cover details to settle. Ironically, this book's main female character is a breast cancer survivor. I had to do a lot of research for that; her cancer was also in her left breast. I trust the rest of my story will have as happy an outcome as hers did because like her, I've got stuff to do.

In the meantime, there's the visit to the oncologist (Friday) and decisions to make about what he tells me. It's easy to put some activities on hold or cancel them, but I have reservations at the Phoenix Hilton in two weeks for a writers conference I was looking forward to, at which I'm planning to launch my new book, which will be off the press next week. So I hope I don't have to cancel plane, hotel, and conference, but it all depends on what the oncologist advises.

Worst of all is the anticipation of surgery. I'm experienced at that--this will be the lucky number 13th surgery/procedure I've had. Last time was two years ago when I was in the hospital nine days after losing a lot of bowel to emergency surgery because of an old scar tissue problem. "Anesthesia brain" is bad for a writer. It was six months before I could think well enough to read, write, and make decisions about the manuscript I was submitting. I don't like being in suspended animation like that. But I have to say, the best thing about hospitals is the heated blankets. Closet-sized rooms, food, noise, midnight visits from phlebotomists--not so much.

I haven't told anybody outside my family--you're the first to know--because while I appreciate support, I can't talk yet about the things people will want to know--treatment, prognosis, recovery. Chemotherapy is not a happy prospect, and neither is radiation. But my activity schedule will change and people will wonder why. That's it. Adenoma carcinoma. I'll keep you posted.