October 15, 2013: Journey of Faith Update #6

I have a perfectly square sunburn on my chest, completely surrounding my left breast and tickling my armpit so as to include the site where the sentinel lymph node was removed. But I am DONE with radiation.

Done as in finished, ended, concluded, completed, fulfilled, wrapped up, sewn up and polished off. Finis! And darned happy about it. Can you tell?

Radiation Treatments – Not What I Expected

Out of all the treatments I’ve endured since discovering my breast cancer, radiation has by far been the easiest. I think it was a combination of the incredibly relaxing surroundings, the friendly and accommodating staff and the relationships built with other patients that made the experience so unusually pleasant that I never really felt like I was undergoing treatment for cancer.

From the moment I walked into the lobby with its plush couches, wingback chairs and working fireplace, I almost felt like I was visiting an old and dear friend. Spouses of the other patients nodded and smiled to me while Dania, the receptionist, called out her friendly greeting. She never failed to greet me by name before saying something to the effect of, “You’re lookin’ good today, darlin’.” 

After signing in and changing into my gown, I would head to the patient waiting area. Decorated much as the lobby was, this special area also included a large flat screen television that quietly played soothing videos of nature. There wasn’t a hint of the stark and depressing environment one usually finds in a medical treatment facility. (Other medical facilities should take note!)

I quickly made acquaintance with the other patients awaiting treatment. Because each of us was scheduled for treatment at the same time each day, we were able to strike up conversations about our treatments, our families and the state of the country. While unusual, this bonding with the other patients was comforting.

One of the first patients I met, Steve, was really struggling with his treatments. He seemed depressed and ready to give up. I tried to encourage him and lift his spirits, but I’m not sure I had much of an effect. He completed his treatments about a week or so into mine so I don’t know how he’s doing now; but I still pray for him.

And then there is sweet Mr. H.  We had dozens of conversations about our kids and he never failed to ask me how Nick was and if he was still in trouble. His kids were grown and gone, but he had plenty of encouraging (and occasionally hilarious) stories to share about the pitfalls of parenting. About halfway through my treatments, he completed his; so on his final day of treatment, he brought in “graduation” cupcakes for Charlie and me since he wouldn’t be there to see us finish our treatments. What a gentle man. I really missed him when he finished treatments and I wonder how he’s doing now.

My final couple of weeks of treatment were spent sharing the waiting room with Charlie and John, who were kind of surprised to discover that they were neighbors in the same community. We, too, enjoyed many conversations and checking on each other’s progress.

Radiation Treatments – Still Not What I Expected!

The technicians who treated me were both personable and professional. I hate to say that I had favorite technicians, but if the truth be told, I did. My absolute favorites were Steve and Holly, both of whom treated me for the majority of my sessions. It didn’t take long to discover that Steve liked to ride motorcycles (as my hubby and I do), and Holly’s son and mine were going through many of the same things. Happy Holly’s perpetual smile reached right down into her voice; and even when I couldn’t see her face, I could hear her smile. I also loved Becky (of my mapping tale), Melva and Debbie. Though they didn’t work with me as often as Steve and Holly did, their loving concern for me was evident.

The treatments themselves weren’t bad at all. I laid down on the treatment table with the molded pillow we made last week holding my arm in place over my head, while the linear accelearator was positioned over me and to my right. The technician would check the markings made on my chest during the mapping session to ensure the angle of the linear accelearator was positioned just right, and redraw them with the body paint if necessary. (That body paint is funny stuff. When you want it to stay on, it comes off; and when you want to scrub it off – like now, when I’m done with treatments – it stays stubbornly in place.)

Once I was in the proper position and the shields were inserted into the machine to protect the parts of my body that did not need to be treated, the technicians left the treatment room and went to the outer room to operate the machine, closing the heavy metal door behind them. 

As the technicians watched me on the video monitor from their control desk, the linear accelearator made several clicking and whirring noises as it aimed the radiation beam from several angles. After two bursts of radiation (one for about 25 seconds, and a second for about seven seconds), the technicians came back into the room to reposition the machine to my left and under me to attack the tumor bed from the other side. (Since the tumor had been in my left breast, the angle of the radiation had to be carefully set in order to avoid damaging my heart or lung. Hence the upper right and lower left settings of the linear accelearator.) Another two bursts of radiation and the treatment was done.

Similar to getting an x-ray, the treatments were painless and quick. The part that took the most time was setting me up in position so that the tumor bed was the only area to be treated. By treating it from both sides, it was possible to give the tumor bed a higher dose of radiation than what would have been possible by treating it from just one angle. Since it spread the exterior radiation around a larger area, it lessened the damage to normal cells. I still got a pretty bad sunburn, particularly under my breast; but the technicians checked carefully each day for severe skin damage that would need treatment. Thankfully, though my skin was burned and did split in one area, it didn’t get to the point where we had to stop treatments.

Silly Hat Tricks

As you know from my Hat Party story, I have dozens of hats to choose from. I kept a regular collection of about a dozen hats at the front door that I would choose from each day, and a box of more fancy (think “church” or “Great Gatsby”) hats that just weren’t made for everyday wear. Until now.

In the first weeks of my treatment, everyone would comment on the different hats I wore each day. The “bling” hats seemed to be the favorites, so I started teasing that I had a special pink feather hat I was going to save for my final day of treatment.

On the week leading up to my final treatment, the fancy hats were out of the box. The black straw hat with neon stripes was first (and yes, I wore black pants and a neon pink shirt to match the hat. Who else do you know that has to choose CLOTHES to match a HAT?) The brown floppy hat was next, then the white Great Gatsby hat. And all these hats were leading up to ... The Pink Feather Hat.

Now if you want to see a silly hat, you’ve got to see The Pink Feather Hat from my friend, Lisa. When I pulled that hat out of the gift bag at the party, I thought, I’ll never wear this! Ahh, but I was wrong. The Pink Feather Hat was perfect to celebrate my end-of-cancer-treatments Final Day of Radiation. And it received such acclaim that everyone wanted a picture. Some even wanted a picture of themselves wearing it.

Back at Home...

Now that my hair is growing back in, my hubby has started calling me his “Ch-ch-ch-chia Pet.” (Those of you who are too young to know what that is will have to Google it!) And someone else just told me my hair is long enough now to be a Marine. I’ll just be happy when it’s long enough to comb.

Thankfully, life is almost back to normal. The fatigue is lessening some and my energy level is building. I have much to be grateful for this upcoming Thanksgiving.

August 21, 2013: Journey of Faith Update #5

It seems that the longer I continue these cancer treatments, the farther apart the updates become due to the unrelenting fatigue. That's probably the worst part of the whole ordeal – the fatigue. To make matters worse, I've also had chemo-induced insomnia for months. I rarely get to sleep before 2:00 a.m., though I am in bed many hours before that, tossing and turning. It wasn't too bad during the summer since I could sleep in a little before bringing Nick to the camp of the week; but now that school is back in session and the alarm screams at 6:30 a.m., I'm really feeling the exhaustion.

Chemo:  Round 2

Three weeks after surgery, it was chemo time once again. The drug this time was Taxol, which I remember both my Aunt Ethel and my father received for their cancers. I just don't remember if it was easier for them than the other drugs or harder. For me, it was easier in some respects (no nausea or vomiting) but much harder in others. 

The first thing the nurse told me before the first infusion was that the Taxol might cause neuropathy in my hands and feet. Though I didn't notice it after the first infusion, I began to feel it after the second. It got progressively worse over the course of the four infusions; and even though I finished the four cycles of Taxol a month ago, the neuropathy is still in full bloom. Sensitivity in my fingertips is greatly diminished (which makes for an interesting typing experience), and the tingling sensation often overtakes my hands right up to my wrists. I have difficulty buttoning buttons, picking up small objects, or doing any other task that requires a good sense of touch.

I understand that there is a possibility that the neuropathy will be permanent – at least, that's what the doctors have said, and I know of at least one breast cancer survivor who does have permanent neuropathy from her chemotherapy. The doctors have also said it may clear up in three to five months. As I pondered this information it occurred to me that I already know it will clear up in the Lord's time, as He promised I would be made whole. He didn't say "made whole except for continuing neuropathy." He said this disease would leave my body and I would be made whole. I have faith in the Lord and in His promises to me.

Another very difficult part of this phase of the treatment was the unbearable bone pain I experienced for five or six days after each Neulasta shot. The Neulasta shot is given the day after the chemo to induce the bones to make more white blood cells. Although I had been warned that it might make my bones hurt before undergoing the first cycle of chemotherapy, it did not have that effect on me then. It just made me feel like I had the flu for a couple of days. Maybe it was just the cumulation of all the chemo over time, but this cycle of Taxol seemed to react with the Neulasta and cause extreme bone pain. I would feel the pain first in my hips, then my lower legs, and finally in my joints. The hip and leg pain would disappear after about four days, but the joint pain lingered for several more days. Along with the bone pain was severe muscle weakness to the point that I thought my legs would give out from under me on several occasions. Thankfully, those side effects have ended.

During the course of the two cycles of chemo, I had heard several other patients joking about "chemo-brain." I finally know what they meant. Gosh, do I ever have chemo-brain! I have trouble remembering things, even simple things like words. Mike and I have enjoyed many a laugh at my inability to articulate my thoughts these days.

Prepping for Radiation

Now that the chemo and surgery are done, it's time for the final phase of treatment:  radiation.

I went in to the radiologist's office today for a "mapping" appointment. Becky, the sweet technician who "mapped" me, got me settled onto the CT table with my head on a funky pillow made of what felt like foam pellets and air. I had to raise my left arm over my head, into the pillow, which she pushed and prodded until it was loosely formed around both my head and my arm. Then she suctioned the air out of the pillow until it formed tightly around my head and arm. She explained that this pillow will be used for all of my radiation treatments to ensure that I am in the exact same position each time.

The doctor came in after our pillow-shaping fun and drew lines all over my chest, delineating the area he wanted radiated. Then Becky taped off the area and took a CT scan. I had to lie quietly in place while she did her mapping work on the computer. The ceiling above the CT scanner is unlike any I've ever seen before, so I studied it while waiting. Eight of the large ceiling tiles had been replaced with what looked to be glass tiles painted with a beautiful outdoor scene that was brightly backlit. I enjoyed the view of the "clouds" and trees in their springtime splendor while I waited.

When Becky came back she used the laser guides on the CT scanner to pinpoint the exact spot the technician will focus on for the treatments. She then added her own drawings on my chest before removing the tape and tattooing me with three small dots to guide the technicians administering my treatments.

Our mapping fun over, Becky helped me up and gave me my appointment card. I'll be visiting every day at 8:20, starting next Monday, for the next 33 days.

Thank You

My family and I appreciate all the love and support we've received from our friends and church family throughout this trial. Your cards and letters, meals and service around our home have made a tough time easier to bear and we thank you from the bottom of our hearts.

July 17, 2013: A Journey of Faith Update #4

I was surprised at how long the recovery from surgery actually took. My only experience with surgery was my port surgery in March, so I kind of expected I would be up and running in just a couple of days. Hah! Silly me. I haven’t blogged for almost two months now because of the length of time it took to recover from the surgery and the side effects of the new chemo regimen I’m undergoing. But today is a good day, so I will try to update my Journey of Faith for those friends who’ve been following it.

Before doing so, however, I want to share a particularly uplifting conversation I had with Carol last night. She told me that her family keeps me in their prayers every day, but that Zach always says a particular prayer:  that I will be blessed with sufficient faith for this trial. I immediately felt my Heavenly Father’s love when she shared this with me, as I have had exceeding faith throughout this whole journey that this disease will leave my body and I will be made whole as promised. But now I know from whence that unwavering faith has partially come; from the heartfelt prayers of a young man who is dear to my heart. I'm so grateful for Zach's particular prayer that I would have sufficient faith for this trial, and for all the other prayers offered in my behalf by friends and strangers alike.

May 22 – Pre-op Appointment

The pre-op appointment consisted of a very long interview with a nurse who meticulously examined my entire medical history, including things that had absolutely no bearing on the upcoming surgery. I guess in this age of digital records, everything – and I mean EVERYTHING! – is compiled into one huge medical record of your life as a cover-your-butt review to ensure the hospital won’t be sued if something goes wrong. She even knew about my knee injury in college (which I’d long since forgotten about) and other minutiae of the past 50-some years. The all-encompassing scope of things that appeared on her computer screen was actually kind of scary, especially in light of Obamacare.

But I digress.

Following the interview were a quick EKG and x-rays of my lungs, both of which were fine. I also had to have blood drawn, but learned that my insurance wouldn’t cover it being done at the hospital’s pre-admittance office. Rather, I had to travel across town to another “approved” office for the blood draw. (While I am really grateful to have health insurance, some of the hoops the insurance companies make you jump through seem a bit ridiculous. Really. What difference does it make who sticks me and pulls out a couple of vials of blood? It’s not like the blood is going to be any different in office “A” than it was in office “B.”)

The next day, we (Mike, Nick, me and Nick’s friend Arian) headed out to the condo in Daytona for the Memorial Day weekend. It was a nice relaxing weekend on the beach, resting up for the surgery to come and enjoying a few good books, swimming, and a little miniature golf with the boys.

May 28 – The Surgery

I arrived at the radiologist’s office at 8:15, rather anxious about the procedure to insert the needle guide. The same team who did my biopsy readied me for the procedure while I said a quick prayer and braced myself. I had visions of pain and some long needle grotesquely sticking out of my breast; so I was pleasantly surprised to hear, after what seemed like only a few moments, “OK, we’re all done. You can get up now.” I hadn’t felt a thing! They bandaged me and sent me on my way to the hospital. (And thanks to the bandages, I couldn’t see anything either!)

The admittance nurse who brought me to my room and helped me get ready for the surgery turned out to be Robin, a friend from many years ago when we worked at a local law office together. We enjoyed a good chat about the old days and old co-workers while she took my vitals and got me settled into my room. This would be the room I would come back to after a couple of hours in recovery, and in which I would spend the night if I elected to stay. It was a nice private room.

Soon another nurse came in to get me ready for the radioactive dye injection. Recalling what my surgeon had said, that the injection burns a little and I should ask for a sedative, I did as he suggested. That seemed to throw her off a bit and she went off to see if I could have a sedative since my surgeon hadn’t actually prescribed one. She came back and said that all I really needed was a local sedative, so she applied a numbing cream around my nipple and sent me off to radiology.

I suppose when the radiologist introduced me to the tall, handsome, strapping young man standing by my side and invited me to hold on to his hands while she did the injections, I should have suspected that “burns a little” was probably not an accurate description of what was about to occur.

Oh. My. Gosh.

On a scale of one to 10, a 12 is about the amount of pain I felt with each injection. All four of them. Top, bottom, and both sides of my nipple. Truly, that was the most pain I think I’ve ever felt in my life. The first injection took me by such surprise that I jumped clear off the table (while lying on my back) with such force that the needle came completely out of my breast and radioactive dye sprayed everywhere. I quickly understood why Mr. tall, dark and handsome was standing there holding my hands – to hold me on the table and keep me from punching the radiologist! I gripped his hands so tightly for the remaining injections that I’m sure they were numb and sore by the time I let go. It was all I could do not to cry out and weep, though my eyes did tear up with each injection.

Once the injections were completed, Ms. radiologist disappeared and Mr. tall, dark and handsome took over to complete the scan. He carefully followed the migration of the dye to my lymph nodes (at least this part didn’t hurt), then snapped a picture and drew a map on my breast for the surgeon to follow to the lymph node he was going to remove. Before long, we were off to pre-op where I was met by none other than the Eddie Murphy look-alike male nurse from my port surgery, “Junior.”

Junior quickly inserted an IV, put on leg cuffs to keep my circulation going during the surgery, and forked over a little “happy juice” to get the ball rolling. I recall the surgeon and anesthesiologist coming in and chatting with me briefly in pre-op, and a discussion about whether I could wear my “Save the TaTas” hat in the operating room or had to change to the hospital’s little white gauzy hat, but the “happy juice” was already starting to kick in and things were getting a little fuzzy. I vaguely remember watching the ceiling tiles go by as Junior rolled me to the operating room, transferring to the operating table and the anesthesiologist putting a mask over my face. The next thing I knew, I was waking up in my little after-recovery private room some four hours later.

The first thing I noticed was that my lower lip had a huge bump inside and was completely numb, like after you go to the dentist. I had a bit of a sore throat from the intubation, and figured that was why my lip was numb too, but not much pain at the surgical sites. I was able to use the bathroom and hold down some water (both part of the criteria for being able to leave the hospital that night), and everything looked good to the nurse when she checked my incisions. Mike asked if I wanted to stay or go home, but there was really no thought required to answer that question. I wanted to go home. The hospital processed me out and about two hours after awakening, we were on our way home.

The Recovery

I quickly realized that the only comfortable sleeping position after breast and lymph node surgery is sitting up in a recliner, and that’s where I slept for the next two weeks. It wasn’t so bad the first four or five days while I was on pain meds that pretty well knocked me out; but after I stopped taking the pain meds, the leg cramps and butt pain really kicked in. (You can only sit on your butt for so long before it begins to hurt!) Sleep was elusive after that as I had to twist and turn frequently to ease the cramps while still trying to stay upright.

One of the things mentioned in my voluminous medical record is the fact that I am allergic to surgical tape. I noticed that first night that I had a small red area on my breast in between the two surgical sites that almost looked like dried blood. The next day, it appeared to be larger and redder. By the third day, it was about one and a half inches square, bloody and oozing, and it finally dawned on me that someone had taped something to my breast and I was having an allergic reaction. Great. Now I had three bleeding, oozing sites to take care of!

And what a mess they were. Again, I am a neophyte when it comes to surgery and caring for surgical wounds. I didn’t Google anything about it and no one mentioned the kind of aftercare the wounds would need, so it all came as a huge surprise to me. I had assumed that I would just change the bandages once a day or whatever, slap on a little antibiotic cream, and be back at work by the end of the week like with my port surgery.

I quickly learned that surgical sites ooze. A lot. An awful, awful lot. Like I would put on bandages two-deep and it would ooze through both layers of bandages in an hour. So I started putting on two bandages and covering both incisions (and the allergic reaction site) with a large washcloth, and it would still ooze and bleed through to my clothing in an hour or two. I finally had to take some sanitary pads with leak-proof plastic coverings and put those over the bandages and washcloth to make it through the night without bleeding and oozing on my clothing.

I also discovered that surgical sites swell. A lot. Here I was expecting my left breast to be smaller than the cancer-free right one, but it was considerably larger for weeks. Larger and harder, almost like a ripe cantaloupe. The swelling has gradually come down over the past eight weeks and my breast is now the size I expected it to be … just a little smaller than the right one, not really noticeable even in a bathing suit. Yay!

All in all, it was a full two weeks before I began to feel anywhere near normal and another week beyond that before I could begin sleeping in my bed again. I couldn’t lie down because if I did, I couldn’t roll over or get back up. You don’t realize how much you miss your bed and the particular position you sleep in until something happens where you can’t.

June 4 – Surgical Follow-up

I saw the surgeon a week after the surgery and he poked and prodded both surgical sites pretty thoroughly. The lymph node site had only bled a little up to this point; but after he poked and prodded, it began bleeding in earnest. I expressed my concern to him about the bleeding, and he assured me that the blood was “old blood” that needed to come out. He was a little concerned about the allergic reaction site though, as it was a large open wound, so he prescribed antibiotics to help heal it.

The surgeon informed me that the labs had come back and my sentinel lymph node was clear! The margins surrounding the tumor were clear too! The cancer was gone, just as promised in my blessing several months ago. It’s always nice when science confirms what the priesthood has already pronounced and faith has brought to pass. (Smile)

May 21, 2013: A Journey of Faith Update #3

I naively expected that I would have increased energy since I completed the first round of chemo over two weeks ago, and I always had more energy in week two of the cycle than I did in week one. But I've learned, much to my dismay, that that is not the case. I haven't updated this blog in weeks because of the extreme exhaustion that has become a part of my every waking moment.

May 2:  Chemo #4

I met with the oncologist before the last chemo session and brought a whole list of questions with me for him to answer. Yes, I will need radiation and another round of chemo after the surgery. Yes, the tumor has shrunk from golf-ball size to the point where he can barely feel it. (Yay!) And I'm clear to have the surgery any time after May 16, which is two weeks after this chemo session.

The fourth chemo session went much as the first three, with one exception:  the thing I feared most when I found out I'd have to have chemo finally happened. I threw up. Fortunately it was only once and not as bad as I've heard, but it was most unpleasant. 

I'd discovered early on that brushing my teeth seemed to invoke the dry heaves and I'd fought them for the week or so after each chemo treatment. But there's nothing worse than throwing up because you brushed your teeth, and then wishing you could brush your teeth to get the taste out of your mouth – but knowing that if you did, you'd likely throw up again! What a conundrum. Fortunately, the dry heave problem resolved itself five or six days after each chemo treatment; but the bummer is that the chemo leaves a strange taste in your mouth and makes everything taste funny, so you WANT to brush your teeth more often. You just can't unless you want to risk the dry heaves and/or throwing up.

May 15:  Meeting With The Surgeon

Mike went with me to meet with the surgeon, and we waited for over an hour for my 4:30 appointment. Normally that would really irritate me; but knowing that this good man spends as much time with each patient as that patient needs tempered my irritation. As it was, he spent over an hour with us patiently answering every question and explaining the tiniest details of the upcoming surgery until we completely understood and were comfortable with how the events would unfold.

The surgery could have been scheduled as early as today (May 21), but I requested that it be scheduled for next week so that we could take advantage of the upcoming four-day holiday weekend to grab some R and R at Daytona before settling in for the surgery and its aftermath. And so the surgery has been scheduled for Tuesday, May 27th. The surgeon recommended, and we agreed, that he perform a lumpectomy rather than a mastectomy.

I have an 8:15 appointment at the radiologist's office that morning for the insertion of a needle guide. I'm somewhat anxious about this 90-minute procedure since it took the same radiologist's office six injections to numb me for the biopsy and I'm not a big fan of pain. Since the tumor has shrunk so much, the needle guide will locate the center of the tumor for the surgeon so that all he has to do is follow the guide in and remove the tumor and surrounding (presumably healthy) tissue.

After the guide is inserted, the radiologist will bandage me and send me off to the hospital for my 10:00 check-in, pre-op appointment. In addition to removing the tumor and surrounding tissue, the surgeon will also remove the sentinel (first) lymph node under my arm to ensure that the cancer has not spread to it. In order to find that lymph node, part of the in-hospital pre-op procedures will be to inject a radioactive dye into the area surrounding my nipple. That dye will circulate to the lymph node and act as a guide so the surgeon can remove it. He explained that this is an uncomfortable procedure that burns a lot, so I should request a sedative before it is done. Good to know. Again – not a big fan of pain.

The surgery itself is scheduled for noon. I asked about the incision site and the surgeon explained that that would be decided by the radiologist's office when they locate the tumor for him. (That will be done using the marker that was left in my breast from the biopsy procedure.) He said that I should request the radiologist to insert the needle at the site of the puckered skin if possible so he can remove that skin at the same time. The marker will be removed during the surgery, as it was inserted into the center of the tumor. The surgery is being done on an out-patient basis, which means that I can leave the hospital as soon as I feel up to it or I can choose to spend the night there and leave in the morning. In any event, our insurance will only cover up to 23 hours of hospitalization for this procedure.

There could be an obvious size difference in my breasts after the surgery, depending on how the tissue looks when he actually gets in there. He has to remove enough tissue so that the lab can safely say he got all the cancerous cells. Recovery time will be one to two weeks, depending on how much pain I'm in; but I'm clear to go back to work as soon as I feel up to it. He has placed no restrictions on my return to work.

I asked why, if the tumor has shrunk, the dimpled/puckered skin is still visible and he gave me a wonderful explanation. It's too bad I can't remember what it was right now (I was too busy holding my stuff inside a paper gown to make any notes), but I do remember that it does not mean that the cancer is where the puckered skin is.

As it turns out, I'm not a candidate for the mammosite radiation because of the size of the original tumor and the fact that the biopsy showed lymphovascular invasion. So I will have to have the external, six-week version of radiation. I'm still unclear as to whether the radiation will follow the surgery or the chemo will; the oncologist said chemo then radiation, but the surgeon said radiation and then chemo. I guess we'll sort it out after the surgery.

Pre-Op Appointment

Tomorrow morning I have a 90-minute pre-op appointment at the hospital's out patient facility. They'll be taking x-rays of my lungs and doing an EKG to make sure I can handle the general anesthesia okay. I'm a little concerned about the general anesthesia too, since that's another first for me; but I have faith that all will be well.

April 27, 2013: A Journey of Faith Update #2

I met a new friend today in Walmart – a sweet lady about to embark on her own journey of faith. It's funny how God (or providence or chance or whatever you believe) puts you in places you need to be either for what you can share or to find what you may not even know you need.

First, let me say that I RARELY go to Walmart (like only a couple of times a year), so I'm convinced this was more than just a chance encounter. But I had purchased a gift that needed to be exchanged, and I was looking to find the exact same thing in a different size when I literally almost bumped into her. We each smiled and said, "Go ahead," pointing to the way our paths were crossing. We laughed, each gesturing for the other to proceed, then she very tentatively said, "I hope you don't mind my asking, but I see from your hair that perhaps you've had chemo?" When I told her that I was currently going through chemo, she confided that she was going to start next week and was scared. She asked, "How bad is it?"

We chatted for a while about chemo and ports and hair falling out, and I invited her to read this blog. I showed her my port and let her feel it, and that seemed to bring her some comfort since she wasn't sure what to expect. (In my opinion, the fear of the unknown is far worse than anything we can identify.) We left each other with a big hug and a few tears, and I promised to keep her in my prayers. I hope that my new friend, Stephanie, is able to come to terms with her condition and to keep her head high, her spirits up and her faith that all will be OK in the end.

A Backward Glance:  April 6-7, 2013, Preemptive Strike #2

I haven't been able to blog for a couple of weeks now due to my heavy workload at this time of the year, so I'm going to take a few minutes now to catch up the happenings since my last post.

The oncologist had warned me that my hair would probably start falling out after the second chemo treatment, which I had on April 4. Sure enough, on Saturday, April 6, I noticed a pretty good sized clump of hair in the drain when I took my shower and a bunch of stray hairs on my pillow. On Sunday, after watching the first session of General Conference, I noticed about 40 or 50 hairs on the couch where I'd been sitting. That's it! Time to shave my head!

We'd known this day was coming for weeks, so we were pretty prepared for it. In between sessions of conference, we all three moved to the kitchen. Mike pulled out the trusty clippers I had used to shave my father's head (on his 74th birthday) when he was going through chemo, and Nick grabbed the dustpan and broom. As Mike shaved off the gorgeous new red locks, Nick quietly and continuously swept up each and every clump of hair. I'm sure shaving my head was harder on both of them than it was on me; I never saw so much as one hair on the floor or anywhere around me. I looked in the mirror before jumping into the shower and was surprised to see my father staring back at me. I never realized just how much I look like him!

One of the things Michelle, my oncology nurse, had warned me about was the emotional shock that losing your hair can be for a woman. She said that there's nothing worse than waking up with clumps of hair on your pillow, or brushing it and having clumps fall out. We had long ago decided that the only way to deal with losing my hair was to just accept it and DO IT – meaning not wait for the inevitable, but do a preemptive strike and shave when it was time, regardless of what others who didn't have our perspective on things might think or say. (And yes, there were a few "Why did you shave your head?" questions. Why? Because there's nothing more demoralizing than having clumps of hair fall out in your hands, or finding them on your pillow or in the bathtub drain each day. It's MUCH less traumatic to just shave it off and be done with it on your own terms. Oh – and by the way, no, you can't see my bald head. If I wanted you to see my bald head, I wouldn't be wearing this hat!)

As the oncologist also warned me, the second round of chemo was cumulative. The nausea was a little worse (though I STILL have not thrown up even once) and the fatigue was intense for the first four or five days after chemo and the shot to build up my white blood cells. It was mid-week before I started feeling any energy again.

Another Friend With Cancer

As Michelle the oncology nurse said in my first appointment, we would start noticing cancer everywhere – on TV, in movies, in commercials, in books, just EVERYWHERE. But the one place I didn't want to notice it was in my friends.

While I was going through the shaving-my-head weekend, another friend, Julio, was just finding out that he might have cancer too. I went with Mike and a few other priesthood holders to his house to give him a blessing, and felt impressed while I was there that one of the reasons I'm going through my cancer is to help Julio through his. As I've pondered that bit of inspiration, I have felt peace from my loving father in heaven and know that it is true. I hope that I am able to do that.

Oops – Really, it was an accident!

On Saturday, April 13th, I asked Mike to shave my head a little closer because the bristly hair (no longer soft and silky – maybe a result of the chemo?) was getting stuck in my hats and yanked out when I took the hats on and off. He readily agreed, and so we went back out to the kitchen with the trimmer.

After he finished shaving my head closer, Mike asked me to trim his hair and save him a trip to the barber. How could I refuse? So I put the 2" guide on the trimmer and proceeded to carefully trim his hair all around the sides and in the back. About that time Mike commented on how much money we could save by having me cut his hair again like I used to. I put the trimmer down on the kitchen counter for a minute while I brushed him off, then picked it up and took a swipe right down the middle of his head ... and gasped in shock. I had just shaved a 2" wide swath of his hair clear down to his scalp! I looked over at him in alarm, then to the kitchen counter – where the guide that should have been on the end of the trimmer sat mocking me.

At first I think he was a little upset, but I was even more so. I knew he didn't want to shave his head! The poor man just wanted a trim. But after looking at me in alarm, we both began laughing because there wasn't anything we could do but finish shaving it off. So we went in to church the next day looking like bald-headed twins. Mike collected much sympathy and goodwill for being such a good sport and shaving his head to be like his wife.

Chemo #3

Thursday, April 18th, brought chemo round #3. I went in like an old pro and got hooked up to my IV via my port, then walked myself over to a recliner and got comfortable for the 90-minute session. I kept busy with my tablet, answering emails, Facebook stalking my friends, and Pinteresting. I looked around at the others who were getting chemo at the same time and wondered about them and their treatments. Some were bundled under blankets, shivering and looking miserable; others looked like they were in pain or frightened. Either my chemo treatments are not as bad as theirs, or my attitude towards it is different because I know the outcome of mine. Either way, once again, I left my session feeling fine. I returned on Friday for the shot to build up my white blood count, then prepared for the cumulative effects of chemo round #3 to hit.

The weekend was spent mostly sleeping or just lying on the couch reading. The shot makes me feel like I have the flu – weak, tired, achy and just kind of blah. But thankfully, the flu-like symptoms only last for about three days. Then there's another couple of days of fatigue and nausea before my strength and energy return.

When I had met with the oncologist before chemo #2, he had told me that if the nausea drugs weren't strong enough, there were other options and I just had to ask for them. Though the drugs were fine for the first round, I did notice that they started wearing off after about four hours with the second round of chemo and I couldn't take the next dose for another two hours. So this time, I requested and received a stronger drug – Zofran. It lasts for eight hours and was much better at keeping the nausea at bay as the cumulative effects of the chemo got stronger. And in those first couple of days, I was free to tag-team the two drugs (like you do with Tylenol and Ibuprofen) to keep the nausea at bay.

A Little Help From My Friends

On Wednesday, April 24th, the Mia Maids from church (Cassie, Olivia, Breanna and Anna) came with their leaders (Sue and Barbara) and cleaned my house. They dusted, vacuumed, scrubbed the kitchen and bathrooms, washed the floors, washed the throw rugs, and even brought my family dinner and dessert for the following day. It's been all I can do to keep up with the laundry, cooking and dishes through this trial, even with help from Mike and Nick; so I truly appreciated their help. In fact, the last time my house was clean was when Mandy, Rob and their boys (Robert, Adam and David) came and cleaned the house prior to the hat shower that Nick threw a month ago. So you know it needed it!

Other friends (Cindy and Natasha) have brought me meals, and my counselors (Sandra and Suyapa) have been carrying Primary for the last month, teaching when I am too sick to go to church and attending my meetings for me. My boys have taken over much of the cooking and laundry, and all of the cat litter box cleaning duties, since litter boxes are specifically forbidden in my list of chemo no-nos. Yay! (Who knew I had to get cancer and have chemo to get someone else to clean the litter box?)

I am amazed at how many friends have written, emailed and Facebooked their love and support for me during this trial. I am so grateful for your cards, your thoughts and your prayers and rather humbled by all the attention. You sure know how to make a girl feel good. :)

April 4, 2013: A Journey of Faith Update

In my last post I facetiously mentioned that I no longer knew what my original hair color was. I suppose when you make a comment like that, you have to be prepared for someone else to provide photographic evidence to assist your failing memory. Sure enough, my old friend Lani just happened to have a couple of photographs dating back to the stone ages that she was more than happy to share.

The first photo is of Lani (on the right) and I on her wedding day, June 10, 1972. I was her maid of honor, as she was mine to my first husband so many years ago. Lani has blonde hair, so I'm thinking my darker hair is probably a few shades lighter than shown in the photo. Our friendship was very tight all through high school years, but we lost touch for a long time after she and her hubby, Jim, moved to Maine. We finally reconnected a few years ago. 

The second photo was taken in 1977 and supposedly shows my original hair color. I'm sharing this one mainly because it just goes to prove to those of you who know me now that I've always hated having my picture taken! (And because I really loved that sweater! Wonder what ever happened to it?)

The third photo is a recent one of the "preemptive strike" hairdo, since my hair is due to fall out any time now. (Mike is really not looking forward to that, since he's going to shave it off for me when it starts falling out. Probably this weekend.) I asked Mike and Nick which of many photos they liked best, and the one that I put on the blog home page was their favorite. (I was overruled.) The one on the last post was their runner-up choice, but I liked this one best. What do you think?

April 4:  Chemo Day #2

Today was chemotherapy treatment day, round two, and there was plenty of good news to share.

Before starting the treatment, I met with the oncologist for an exam and chat session. He told me that upon examination, it appears that the tumor has already shrunk from the first round of chemo! (Of course, I know it's also because of my faith in the blessing.) In addition, he said that my body has tolerated the chemo so well that I don't need to go in for blood work and a checkup in between chemo sessions! He did say that the side effects are cumulative, so this week's side effects should be similar to but stronger than last week's. But at least I know what to expect this time around, so I can be better prepared to handle them. The worst effects were the fatigue and nausea last time, so I'm expecting more of the same this week.

Sure enough, the nausea started kicking in around 7:00 tonight. I took a nausea pill, which so far has kept the waves of nausea at bay for the most part; at least I'm not throwing up. Hallelujah! The side effects last time seemed to intensify for about five days before starting to lessen a little each day. So I expect that I'll be sleeping a lot this weekend, and working on my deadline in between naps. :) 

I had a long chat with Karen, my treatment nurse, as she was doing the chemo injections today and learned a lot. She has worked for various smaller oncologist offices around the area, but likes working at this oncologist office because of the checks and balances they have in place to make sure each patient is given the correct drug, in the correct amounts, and the correct way. There are two pharmacists on staff to mix the drugs, and two nurses check the prepared drugs against the script and against my personal information before any treatment begins. (A lot of the smaller offices she worked at do not have these checks and balances.) The office also uses a programmable drip machine rather than relying on the nurse to get back to each patient when positive medication pressure is completed before negative pressure starts pumping blood back up the IV. Some of my medical friends may want to correct what I've tried to describe, but that's the way I understood what she was saying.

Karen also told me that the chemo I received last week was a "super" chemo session, or very strong one. I didn't remember that being explained to me last week, but Mike said he did. Oh well, that's why I brought him along ... to remember things my brain couldn't.

I didn't let Mike come with me to this treatment. I remember feeling OK after I left it last time, and assumed I would this time as well. Sure enough, I was OK to drive afterwards; and my exam nurse, Michelle, assured me that I didn't need to have Mike attend each chemo session with me. That's three hours of b-o-r-i-n-g for him if he comes, and three hours of READING for me if he doesn't!! Reading won. :)

Suzanne's Suggestion

My dear friend Suzanne emailed me after my first post and asked that I include in my next post a "wish list" for my local friends who want to be proactive in any way, and so I'm including her request here. I guess if you'd like to help our family in some way, leave a comment or email me. I would like to say that the cards and emails you've all been sending have meant so much to me. It's so nice to get something in the mail besides bills and junk! Brandie gave me a gift tin when I was first diagnosed that has ended up being the perfect place to hold all the cards, spiritual messages and printed emails to reread when things head south for a while.

I know that there are going to be times that I need help, and I'm not going to be afraid to ask for it because I know there are days that are going to be overwhelming. But by the same token, I won't take advantage by accepting help when it's not needed. So if I don't call, please know that things are OK here. We are having good days too!

Spiritual Thought

I want to share a spiritual thought that Sandra shared with me back when I was first diagnosed. This thought resides front and center on my monitor and I look at it daily because it brings me such strength. It's from "Christ Overrules Our Fears" by David A. Bednar:

"To not take counsel from our fears means that faith in the Lord Jesus Christ overrules our fears and that we can press forward with a steadfastness in Him. To not take counsel from our fears means that we trust in God's guidance, assurance, and timing in our lives."

As Cindy told me when I was first diagnosed, sometimes the Lord has to slow us down and make us reassess our priorities. I know that I've been running faster than I'm able for a long while now. The blessing Mike gave me told me I'd have the strength and energy to do everything that I needed to for my work, my calling and my family; and I have. Despite the rough days, I've managed to keep up with the most important things. Because God's timing is perfect and everything is falling into place around His timing.

March 1, 2013: A Journey of Faith

Yesterday I was diagnosed with breast cancer.

Today I began a journey of faith. 

Before even stepping into the doctor's office to hear the results of the biopsy, I was fairly certain I had cancer. But I also already know the outcome of the upcoming battle. The Lord told me in a beautiful blessing that although the road ahead is long and difficult and full of challenges, this disease will leave my body and I will be made whole. I have faith in the Lord Jesus Christ and in His promises to me. As we sing in the not-so-well-known fourth verse of a beloved Primary song, "I am a child of God, His promises are sure. Celestial glory shall be mine, if I can but endure."

As I pondered the blessing I received, I wondered about the part that instructed me to learn all I could and gain as much knowledge as I could and then TEACH IT. That part really made me stop and think. While pondering it, I was impressed that I was to document this journey from breast cancer patient to breast cancer survivor in a positive and spiritually uplifting way. I suspect it's going to be difficult to find the positive in some of the experiences I am about to have, but I will seek for them and share them.

I've titled this post with the date because that's when my private breast cancer journey began. But it wasn't until I realized I couldn't keep everyone who wanted to know what was happening "in the loop" so to speak, that I decided (after a suggestion from Janae) to blog about it. That way, any of my friends can tune in at will and be updated on just as much or as little as they like.

Early February:  "Hmmm, what's that?"

I didn't have a clue that anything was wrong until about a month ago when I got out of the shower and noticed what appeared to be a lump or a swelling on the outside of my breast. My skin was still damp and I thought that could be causing it. After readjusting things a little, it was no longer noticeable; so I dismissed the incident as unimportant.

Until I noticed it again a few weeks later. This time, as I lifted my arm way back over my head, I noticed a dimple or pucker under the breast. After Googling the symptom, I knew that I needed to get a mammogram and find out what was going on so I called my family doctor for a referral. 

The mammogram on Feb. 22 went beyond uncomfortable straight into "painful" for the left breast. The pain and the fact that they repeated the mammogram on the left breast twice were both pretty good clues that all was not well. An ultrasound confirmed my fears:  I had a golf-ball sized mass. An ultrasound-guided core biopsy was scheduled for Monday, Feb. 25.

My friend Cindy took me for the biopsy and it was such a blessing to have her there. She made me laugh and calmed my fears and just visited with me during the l-o-o-o-o-n-g wait for the procedure to begin. Advances in medicine have changed both the diagnostics and treatment of breast cancer, and I was surprised to find that the incision for the biopsy was only about a quarter of an inch long and no stitches were needed. Everything was done by needle through that one hole. The only snafu was that the local anesthesia didn't seem to work very well on me, and it took six shots before they were able to complete the biopsy procedure. I was sent home with an ice pack and instructions to rest for a day or two (yeah, right!), and warned that I would bruise pretty good. Yep. Sure did. They said we'd have the results in two to four days.

Two days later, there was a message on my answering machine from my family doctor asking me to call. I did and thought I left a message for the nurse; but I realized later that when my son and his friend distracted me for a few minutes, I hadn't completed the steps necessary to actually leave a message on their voicemail system. By the time I figured that out, they were closed for the day and I was left anxiously waiting for morning.

February 28:  The Diagnosis, Heavenly Intervention and A Blessing

Nurse Shay called me first thing in the morning and asked me to come into the office. The wait until my 1:00 appointment seemed to take F.O.R.E.V.E.R. When the doctor walked into the exam room looking quite serious and said, "It's not good news," my suspicions were confirmed. I have breast cancer – more specifically, I have invasive ductal carcinoma and lymphovascular invasion by carcinoma is seen.

The doctor explained in general terms the various treatment options – radiation, chemotherapy, and either mastectomy or lumpectomy – and asked if I had any preferences as to a surgeon and oncologist for referrals. Hmmm. Funny you should ask. 

After my mammogram last Friday, I had a hair appointment for my usual color (no, I don't remember the original one) and cut. I mentioned to my stylist, Darlene, that the ultrasound had found a golf-ball size lump and she told me that the stylist in the next booth had just been through breast cancer six months ago and was now cancer free. We talked through the whole hair appointment about Becky's procedure and she enlightened me as to some of the things I could expect to go through. Her cancer was significantly smaller than mine, but I felt like she'd been heaven sent because the conversation we had was so uplifting and I felt such peace as we talked. She loved her surgeon – who she said prayed with her before the surgery – and so I asked her for his name. 

So did I have a preference for a surgeon? You bet I did. I didn't know any oncologists though, so my family doctor arranged for referrals to Becky's surgeon and an oncologist. I was told they would contact me in the next day or so with appointments.

That evening, Doug and Cindy came over and Doug gave all three of us beautiful blessings. I wish that I could remember more of the instructions and promises made, but my memory fails me when I need it most. However, the blessing I received left no doubt in my mind that this is going to be a difficult challenge for our family. It was quite clear from the promise that I will be "made whole" that this trial is one I must endure; there is to be no priesthood healing and avoidance of the trial. It is going to be a very difficult trial of our faith.

March 6:  The Surgeon

It's been my experience that some medical professionals either lack a bedside manner because of some basic personality flaw, or forget – because of their day-to-day familiarity with illness and disease and the treatments thereof – that a new diagnosis of a serious disease or illness is a life-changing event for the one receiving the diagnosis. It may be business-as-usual for the medical professional, but it is way-out-of-the-comfort-zone for the patient. So we were pleasantly surprised when we met the surgeon.

He spent probably 40 minutes with us between the pre-exam discussion, exam and post-exam discussion. He patiently expounded upon each and every possible scenario that could result from my diagnosis, without a hint of exasperation at our questions and without making us feel like he'd told the same thing to the last couple of hundred patients he'd seen. He made me feel as if I was the only patient he had and his entire focus was on me. 

The surgeon took the time to explain to me what the Nottingham Grade III (poorly differentiated), Tubules Score 3, Nuclear Score 3, and Mitoses Score 2 meant on my biopsy results, and reassured me that more tests would give us a better picture of my 3.5 CM, T2 tumor. He told us that the survival rate is the same with either full or partial mastectomy and so he believes in breast conservation surgery, or lumpectomy to remove the tumor and the sentinel lymph node under the arm to ensure that the cancer has not spread into the lymph system. Radiation options include external radiation on the whole breast after surgery (for about six weeks), or a mammosite – radiation inside the breast – for five days. The mammosite cannot be done if lymph nodes are involved though.

The surgeon also did several things that made an impression on Mike and I that he is not only a humble man, but definitely the surgeon for me. First, he left the room so I could get dressed again before we discussed his findings. (I'm sorry, but it's difficult to concentrate on anything the doctor is saying while wearing an open paper gown! And it's impossible to take notes when your hands are busy trying to keep your stuff inside said paper gown.) Second, when I asked him whether he would recommend surgery or chemo first, he deferred that decision to the oncologist. A surgeon who defers the date of surgery to another doctor? Really?? There was not one iota of an, "I am the all powerful and all knowing surgeon and you will do as I say" type of posturing. And finally, when he said that we'd meet again after I visited with the oncologist, I asked if he was available on Fridays since both Mike and I were off that day and we wouldn't have to take time from work. He replied, "Not really, but let me see what we can do." He then instructed his staff to squeeze me in at lunchtime on his surgery date to accommodate OUR schedule. 

Oh. My. Goodness. This humble, God-fearing man is who I want doing my surgery!

March 12:  The Oncologist

I don't have any notes from my meeting with the oncologist (my hands were busy holding my stuff inside said paper gown); but we liked him and his staff nonetheless. 

The oncologist explained to us in great detail the recommended course of treatment and its possible effects on my body and the emotional state of our family. It would all depend, however, on a few more diagnostic tests:  a MUGA (Multiple Gated Acquisition Scan) test and a PET-CT scan. The MUGA scan would see whether my heart was strong enough to handle chemotherapy, and the PET-CT scan would determine if the cancer had already spread throughout my body's lymphatic system. Those tests would be scheduled before we left the office. Assuming I passed the MUGA test, I would also need to see the surgeon to have a port put in for the chemotherapy.

One of the things that stands out in my mind from that meeting with the oncologist was that I should avoid reading things on the Internet or that well-intentioned friends shared. He explained that everyone's cancer is different. The treatments, the side effects, the emotional effects and the spiritual effects were different for each person; and reading too much (particularly negative things) would make this journey more difficult for me by possibly psychosomatically influencing how I felt. I had already decided that I wanted to listen to my body and how IT was telling me it felt rather than reading about things and then trying to fit my symptoms into those results, so this made sense to me.

Another thing that stands out in my mind is the material the oncologist's office provided for us. We left that day with a specially-made notebook in which to keep all of my lab reports and personal medical records, and with sections on side effect management, nutrition, a "Chemotherapy and You" book from the National Cancer Institute, community resources and other valuable materials to help me through this journey. In addition, they gave us three books:  "Breast Cancer: Myths and Facts, What You Need to Know" for me, "100 Questions and Answers About Caring for Family or Friends with Cancer" for Mike, and "A Mom of Many Hats" for Nick. Each of these books discusses my cancer in a way that is immediately personal for each of us.

March 14:  MUGA Test and A Preemptive Strike 

My MUGA test was scheduled at a local hospital for Thursday afternoon. I was quite anxious about this test since I didn't know exactly how it would be performed and I'm very claustrophobic; but I need not have worried. The hospital staff was very pleasant and accommodating, and quickly put me at ease.

It began with an injection of a radioactive tracer into my blood. After a 20 minute wait to allow it to circulate, I was led to the machine and told to lie down and remain very still throughout the test. They moved the gamma camera into place angled over my heart, and there I stayed for the rest of the test. Whew. That wasn't so bad. The technician told me when she was finished that they were looking for a score of 50 or better and that I had scored a 69. I didn't fully appreciate the score until she told me that very few patients score over 70. Yay! I have a strong heart!

After meeting with the surgeon and oncologist over the prior week and learning that I would definitely lose my hair with the chemotherapy, I worried about how it would affect not only my son and husband and myself, but also the Primary children I teach. I decided to take a preemptive strike and cut my hair real short to start getting everyone used to how I'm going to look in the not-too-distant future.

I ran the decision past Mike and Nick and received their thumbs-up approval, so off I went after the MUGA test to my stylist, Darlene. She asked what style I wanted and I told her to just have at it and do whatever she liked. She did and we all love it. We also decided what the heck; who knows what my real hair color is anymore anyway? So Mike picked out a dashing red shade that we also loved. Dang. Too bad this color and style is only going to last for another couple of weeks! 

March 15:  The Boutique and The Surgeon Revisited

Both the oncologist's and surgeon's offices had referred me to a wonderful boutique for cancer patients. We had to meet with the oncologist at lunch time on Friday, so we decided to head into town a little early and check out this place for wigs and hats.

Colleen at the boutique was very pleasant and accommodating, and quick to put us at ease about the upcoming changes in my life. She brought us back to the wig fitting room and suggested a couple of styles and colors. I had only tried on one wig before I wigged out and decided that I was not ready to be trying on wigs! That was just moving way too fast for me, so I yanked it off and practically ran out of the room to the safety of the sales floor. I tried on a bunch of soft hats instead and eventually chose a few of those for the inevitable day when I lose my hair.

After paying for our purchases, Colleen brought me to the front of the store and instructed me to pick out a blanket, hat, tote bag and other items donated to the store for newly-diagnosed cancer patients. She said that the blanket and hat would keep me warm during chemo treatments, and the tote bag would carry it all back and forth in style. Tears sprang to my eyes as I thought about the kindness of Christlike strangers who had already walked this path and were lighting the way for me to follow. 

The surgeon was just as wonderful, kind and compassionate as he'd been the first time we met, though he looked a little perplexed when he greeted me. He broke out in a big smile when I assured him it really was me and related the story of the preemptive strike on my hair. We discussed the planned course of treatment, then he patiently explained everything we needed to know about the port:  the surgery to implant it, how it would work and feel, and the fact that it would not be visible outside the skin. (Side note:  Now that it's actually in, I beg to differ on that point! Though the PORT is not visible, the LUMP it creates is very visible and, frankly, kinda creepy. Ugh.) We left the office that day with a date for surgery.

March 18:  The PET-CT Scan

While Mike was more worried about the surgery and the chemotherapy coming up later in the week, I was most concerned about the PET-CT scan because of my claustrophobia. 

The preparation for this test began 24 hours prior, on Sunday. I was not permitted to do anything, lift anything, push or pull anything; in short, I was to be as still and inactive as possible. Yeah, right. I was also put on a low carb / high protein diet for Sunday, with nothing by mouth after midnight. Doug came by Sunday night to give me another blessing to help calm those claustrophobic fears, and I was again promised that this disease would leave my body and I would be made whole. Frankly, that promise has made this whole journey so much easier to take. It's like having a road map to get from one side of the country to the other, only easier. All I have to do is stay on the road marked "faith" without turning left or right the whole way, and I will eventually arrive at the destination "whole."

Anyway, the test was scheduled for 1:30. When I arrived I was given another radioactive injection and then 16 oz. of some nasty-tasting, Gatorade-type of drink. Apparently the sugar in the drink would head to any cancer spots that may have migrated from the original tumor. I was supposed to finish that 16 oz. and then have another 16 oz. before heading to the PET-CT scan. (Fortunately, I was allowed a potty break on the way to the test ... but I had to use a special bathroom for radioactive people! That was weird.)

I walked into the PET-CT scan room and was immediately relieved. Though the technician had said that I would be going into this machine head first (and that it wasn't like an open MRI but was enclosed), I could immediately see that the machine was open on both ends and not fully enclosed as I had feared. I could do this! I could see out of it if I needed to!

He helped me onto the table and explained how long the various tests would take. I was to remain absolutely still throughout, or we'd have to do them again. No problem ... no way I'm moving if it means repeating a 30-minute test inside that thing!! I closed my eyes and began singing Primary songs in my head to help keep my mind off the fact that my face was just inches away from this machine. I sang, "We Thank Thee, Oh God, for a Prophet," "I Am a Child of God," "Latter-Day Prophets" and any other Primary tune I could even vaguely remember. At one point I ran out of Primary tunes and began to panic from claustrophobia, but I recalled a particularly wonderful part of the blessing Doug had given me the night before that said the Lord would be on my left hand and on my right hand and before my face, and my fears immediately calmed. I share this intensely personal and sacred part of the blessing with faith that those who need to hear will hear.

In all he performed three tests:  the CT scan, the PET scan of my whole body, and a separate PET scan of just the tumor area. I was in the machine for a little over an hour with only one momentary bit of panic when I took my focus off the Primary songs. The best part was when he was helping me out of the machine, he informed me that the PET scan (though he could not "officially" read it) had shown the cancer nowhere but in the original tumor. Thank God!

March 20:  The Port Surgery

This worried Mike more than me ... at least until the hospital started asking me if I had brought my living will with me. Hmmm. Perhaps this surgery is a little more involved than I had thought?

This out-patient port surgery is to implant a small device about the size of a quarter under the skin in my chest. The port connects to a small tube which is placed inside one of the large central veins that takes blood to my heart. After it is implanted, it can be used to give medicines and fluids or to take the blood samples that are a weekly ritual for cancer patients.

Again, the staff at the hospital were wonderful. The admitting nurse's sense of humor kept us chuckling as she took vitals, and the Eddie Murphy look-alike male nurse who took over from her had us in stitches. OK, that's probably a poor choice of words. But he was funny! Mike was with me through it all, at least until after "Eddie" gave me what he called my "happy juice" and prepared to take me away. Before I knew it, I'd been wheeled into the operating room and was answering a question from the anesthesiologist. Next thing I knew, I was coming to and headed into recovery. Now THAT's my kind of appointment. Take me in, put me to sleep and wake me up when it's over. None of that staying-awake-through-the-whole-thing stress!

I was in recovery for an hour or two, then released to go home. Another day done. What will tomorrow bring?

March 21:  Starting Chemo

Chemo. That's what tomorrow brought.

It wasn't as bad as I thought it would be, though it was definitely weird. After the usual blood test (geez, can you find a vein that isn't already bruised? OK, I see the need for the port), my nurse brought me back to get me set up for chemo. First she went through the basics of a "Patient Focused Chemotherapy Class" and gave me a handout to help me remember the signs and symptoms of the big three:  anemia (low red blood cells), neutropenia (low white blood cells) and thrombocytopenia (low platelets). The weird part came after we went through the instruction when I was being hooked up to the medication through the port.

The port was still very, very tender from the previous day's surgery and I could definitely feel her pushing on it despite the pain medication I was taking. And it was other-worldly having this thing plugged into my chest, and walking around pulling my IV pole with me to the recliner where I would be for the next 90 minutes. (I'm finding this whole port thing to be pretty creepy. There was another woman across from me getting hooked up to her IV too, and I could clearly see the bulge of her port. Maybe I won't be so freaked out about it after a while, but I'm still finding it pretty yucky.)

Anyway, the first half hour I was given Palonosetron hcl and Dexamethasone sod phosphate, pre-medications to alleviate nausea. After a 30-minute rest for that to kick in, Doxorubicin hcl and Cyclophosphamide were added to the IV. The information sheet they gave me tells me that Cyclophosphamide slows the growth of cancer cells; all the sheets say about Doxorubicin is that it is a chemotherapy drug used for treating, among other things, breast cancer. 

The room where you take the chemo is large and open. I was in the middle recliner of a row of three across from my nurse, with Myra on my right. At one point she looked over at me and said, "Don't do what I did. Eat. Drink water." She was in getting fluids because she had become extremely weak from letting herself get dehydrated and not eating. As we chatted, I became even more aware of how blessed I am to have the gospel of Jesus Christ in my life. I am surrounded by friends who love me and are helping my family through this trial; poor Myra has only her husband to help her. I know that this trial has an end; she does not have the same knowledge of her situation. We talked about God and faith, and I promised to pray for her and she promised to pray for me. I hope to get to see her again and have another discussion. Perhaps an opportunity will present itself to share the gospel with her.

I got up after the 90 minute treatment feeling absolutely normal and headed home with Mike. I took it easy all night, not knowing what to expect or when the side effects might kick in. Somewhere in the middle of the night nausea set it, but I was prepared with the nausea pills that had been prescribed. Thirty minutes later, I was back to sleep.

The following day Mike took me back to the oncologist for my shot. Since chemo kills the good cells as well as the bad, each chemo treatment is followed in 24 hours with a shot to help boost white blood cell production. The Pegfilgrastim is given by injection under the skin, and then you have to hang around for about 30 minutes to make sure there's no reaction to the drug. We headed out after 30 minutes feeling fine.

March 22:  The Hat Shower

Nick got the idea to throw me a hat shower from the "A Mom of Many Hats" book the oncologist gave us. He laboriously put together an invitation, then he and Mike drew up a guest list. The idea behind it was that since I'm going to lose my hair, it's going to be either wigs or hats; wigs wigged me out, so hats won. The invitation asked everyone to bring a hat with a spiritual message tucked inside.

Nick planned everything to the last detail. He planned a hat toss game, tossing little hats into a big one; and a golf ball game (because that's the size of my tumor) where you had to roll a golf ball into a cup and make it stand up. It was great fun watching all the guests compete in the silly games like a bunch of little kids! Nick and Mike also planned a "greeting" game where Nick put a label with the name of a person / character on everyone's back and they had to figure out who they were by asking questions that could be answered with a yes or no answer. 

He even planned the menu, including some homemade top hats (marshmallows dipped into pink chocolate and placed on chocolate cookies dipped in pink chocolate). Mike ordered a cake imprinted with a beautiful hat and the words, "Breast Cancer Survivor:  A Journey of Faith." It was a great evening and I now have a wonderful selection of hats from which to choose. The only bummer was that Nick was hoping some of his friends could come, but they weren't able to; and so once again, Nick was the only child at an all-adult party. He was so disappointed that he spent the majority of the night in his room. (Being an only child really sucks sometimes.)

Chemo Aftermath

Ugh. Side effects kicked in pretty good starting Saturday morning. The lower regions weren't functioning properly – and I'm not allowed to take any OTC medications without doctor's approval – so off to the "Side Effect Management" portion of the notebook I went. I learned what to add to my diet to alleviate the problem – which it did ... S-L-O-W-L-Y over a period of several days.

The worst side effect was the fatigue. Oh. My. Gosh. I slept most of Sunday, not even getting out of bed until after noon and heading back for a three-hour nap shortly after getting up. I went to work on Monday, but came home around noon and took a three-hour nap. Tuesday's nap was about two hours, and Wednesday's only about an hour; but I can see that the days following chemo are going to be pretty non-productive if this is the beginning of a pattern.

Nausea raised its ugly head a few times, but was beaten back with the pills. Thankfully I'm not throwing up at all ... at least, not yet. I understand that still may be one of the side effects I have to deal with.

From the March 21st chemo all the way through to March 29th, fatigue ruled the day; but my birthday (March 30th) was wonderful. No side effects and no fatigue! None for Easter, either! Of course I snuck in my normal Sunday afternoon nap anyway, but that's out of habit. Been doing that for years and see no reason to stop. :)

Now ...

... you're caught up on what's been going on over at our house. Thanks for stopping by.