Carboblahblahblah...

I rested from the old chemotherapy until July 8th. Spa Huntsman was ready to let me pay for the privilege of having Carboplatin--my crazy insurance company still won't let us have it covered. Now, more than a week later, my red blood counts are low, low, low. I can sleep anywhere, for any duration. I'm a little nauseous and a little dizzy. It's been a hard decision whether or not to risk teaching this year. But I did sign my letter of intent, so I hope I did the right thing. Something about "reason to get up in the morning" feels right. The decisions we make now are difficult. But a happy day with my grandsons reminded me of one good reason to choose life, even if it is an altered life.

Things I Don't Like

Dr. N. began talking almost before he got the door open, as usual. He greeted me and asked how I was feeling, then said, "There are things on this report that I don't like!" He proceeded to explain the several tiny, new tumors and inflamations I have going on in my body. One under the bone in my right shoulder. One glittering lymph node in the central area of my right upper chest. A small tumor on a bone in my lower back. A large, inflammatory area in my left upper chest. Etc. etc. etc. "So, I want to do something new--I want to use Carboplatin (previously declined by my insurance) and, let's see, they shot us down last time, so I need to appeal and get that approved. We don't want to wait...what's your schedule like next week?" I'm still sick. Sicker. But, there are therapies to try that are worth appealing and enthusiasm for a better diagnosis next PET/CT. What's not to like?

PET/CT

Tomorrow I will hear the result of my latest PET/CT scan. I hope I have enough courage!

Miracle On File

I got a repeat performance of the Coughing Miracle on Friday at my PET/CT scan. I've been coughing for two weeks with allergies (or a cold?) The coughing continued as I rested in my recliner waiting the 45 minutes it takes for radioactive glucose to make it's path through my bloodstream. Once I got on the skinny board, arms above my head in my "special needs" pillowcase, warming blanket placed, I rode out the next 30 minutes with zero disturbance to the hum of the clostro-tube! Don't know how it works, but I'm grateful that I have a miracle on file. Dr. N will interpret the new results on Friday, June 24. Maybe I'll have chemo that day, maybe not. Back to the old Catch 22--if the chemo seems to be "working" I'll have more. If it isn't working, I'll have a new kind, if my blood work shows that my body can take it. If my body is too worn down for more chemo, we'll stop, and as problems arise, they'll keep me comfortable. What to want...what to want...

Confirmed

Dr.R stated on Monday that the pathology confirmed "no cancer" in the tissue removed during last week's surgery. Oooh! I like good news!

Oh Mr. Sun, Sun, Mr. Golden Sun

While driving home from the University of Utah on the eastern belt route last Wednesday night, I could see in my rear-view mirror the most spectacular sunset coming down over the lake. I wished I had a camera with me and that I even knew how to take a picture of a sunset like that. I kept looking over my shoulder, trying to get a better look. I knew it was a momentary thing that would quickly fade away, and it did. I was caught up in the thought that someone had taken the time to design such a beautiful thing, knowing it would only last a few moments. The sun was quite impressive the past two days,teasing us with spring temperatures, making everything smell good. It warmed me again at Spa Huntsman, making the last treatment of this round feel nice. I think the sun was such a good idea!

Spa Huntsman

My fever today was impressive enough in height and history to warrant an unscheduled exam by a real Medical Assistant. I finally qualified for antibiotics, along with some codine cough syrup sure to upset the tummy. But it will be worth it. My chemotherapy was approved and I lost weight too! It was like my birthday, only better. I got to snuggle under three hot blankets with extra pillows with the actual sunlight pouring through the picture windows of the deserted chemotherapy room at John and Karen Huntsman Cancer Center. I had four specialty nurses all to myself. Someone brought cool grape juice and hot packs and a sign to wave if I needed additional service. After three heavy duty cough drops, I relaxed into a near-sleep state the likes of which has not been achieved since last Friday's visit to Spa Huntsman. In spite of a two-stick IV, it was 90 minutes of heaven at the end of a very long day...When an appointment for chemo feels like a restful beach vacation, somehow the "new normal" has gone berzerk.

Friday Afternoon

Friday afternoon, Dr. N had an underlined paper copy of the PET/CT results and I had butterflies. Taking my emotional temperature with his piercing, evaluative stare, he said, "Well you have a lot going on..." (my heart paused) "but we have to sort through it to decide what really means anything to us in terms of your PRESENT condition." Ok. Deep breath. He proceeded to explain that I still shine in every radiated location, I have strands of "suspicious" material, less than 7mm long, looking more like infection than cancer (was I sick recently? Yep, had a cold the day of the scan.) Healing areas are still bright. But the two lung spots in question (he refers to his underlining) are not enlarged or spreading. In fact, the one located in the (who remembers?) is smaller by about 50% SO...I suggest that we just keep doing what we're doing, if by giving you at treatment today, we're not taking you to the brink!" After checking my throat, ears and lungs,he ushered me into the chemo room for Round Three Gemzar and said, "I'll see YOU later." I whispered (so as not to cough in the chemo room), "Will you tell them (the nurses) when?", and he nodded his head and winked. Stretched out in the Laz-E Boy, under my professionally warmed blankets, drugs pumping, hot packs soothing, I got the first good, peaceful nap I've had in days. Thank you, Miracle Giver.

Miraculous Pause

I called the hospital to tell them I wasn't going to make it to my procedure. I left a voice message. When the time came, I still hadn't heard from them, so I decided to put a little faith and trust in the blessing I'd asked for the day before. I went to the hospital, explained that I'd been coughing all weekend and asked for advice. We decided to proceed and deal with whatever, moment by moment. I drank my crystal light, got my radioactive IV, took my 45 minute nap, then hopped onto the conveyor belt for my PET scan. During all that, there was a miraculous pause in the coughing. I coughed once during the scan, but my head didn't move at all. We didn't even have to do anything over. Moral: When you pray for rain, carry an umbrella! (PS--I went to teach afternoon kindergarten after that and coughed myself silly the rest of the day!)

Too Busy To Blog

It's another business crunch! I've got huge projects for college, math benchmarks, report cards, parent/teacher conferences and J-pass (Jordan School District's teacher evaluation)on the docket this week. So can anyone think of a reason why Monday wouldn't be the ideal day for a PET/CT scan? GG response: It's two weeks chemo-free!

A More Positive Choice

If I were Catholic, I would give up whining for Lent. It's just not worth it. I'm going to use that kind of energy for something better from now on. I'm leaving the "post on fire" to remind me just how low I can go in a hurry if I let myself be discouraged. Today, teaching my primary children about the temptation of Christ, I was reminded of how much power we always have over our own circumstances, and the huge resource for comfort that is available in the gift of the Holy Ghost. All I have to do is keep my conditions, inside and out, so that He can stand to be with me! I think that discouragement is a choice, just like any other good or bad attitude I might choose to take. I know I'm strong-willed. So, putting that to good use, I'm willing myself to make a more positive choice, every time, beginning today. I need my Comforter with me, non-stop. I want Him to feel welcome here.

Advocacy

The anticipation of today's chemo treatment had me filled with dread. I came to the conclusion it was because of the ridiculous IV problems we've been having there. Today I tanked up on fluids as suggested--96 oz. by 2:00 and it seemed to help. I was also lucky enough to pull the wonderful Head Nurse at IMC chemo to do my labs. To her, I voiced my concerns. Together, we came to the oft-realized conclusion that "nice is different than good" (see Stephen Sondheim's Red Riding Hood in "Into The Woods") even at the hospital. Many nurses attempting to access sad old chemo veins are nice, but a few are really good and I want one of those--every time. The Headess and I made an arrangement that rivals the post-it note-on-chart alternative. Without offending anyone, I will simply ask the MA who takes my vitals to distribute my chart to the Headess ONLY...and she will make me her patient--every time. This is a breakthrough in anxiety relief for the newly hatched chicken heart I'm packing in my chest. I'm getting a whopper testimony of self-advocacy! I wonder at what point S.A crosses over into the realm of "obnoxious". PS. for Wanda--I broke down and sprayed Asea on every living thing today. Cross fingers!

Sta-Puff

Remember Ghostbusters? I love the part where the Sta-puff Marshmallow balloon man comes down the road in all his hugeness. And now, I'm relating! I love it that taking Dexamethasone (a lovely steroid) is keeping me from throwing up on chemo. But the idea of taking, once again, another huge dose of sta-puff maker can be a little discouraging. I had a resolution! This was the year I was going to shed my 30+ chemopounds and find my body again. I even signed up for three sessions with a real trainer at the gym to get me motivated. Now, I sit in the jets at the end of the day, staring at my ankles that look 10 months pregnant and wonder what is to become of me. Chubby cheeks, chubby wrists, chubby tummy, chubby...time for the Glad Game! I'm glad that I've been tolerating the new IV chemo Gemzar so well. A small headache, a little flu, a little tired, and that's it! Very nice. I'm glad, so glad that I'm off track for a few more days. I can finish radiation and stop feeling like bacon! I'm glad there's still a whole list of chemos to try out if this one bombs--I'm beginning to understand how it all works. I like it that I'm not going to need FMLA this time. I can keep teaching my cute little kindertoes :0) So far, I only have one organ showing signs of new cancer. I got to go to the wedding, I have an adorable new son-in-law and an adorable new grandson and an adorable, patient husband and a brand new Smart Phone! I've been officially introduced to the wonderful world of "Angry Birds" and other happy, free entertainment of the type that is bound to have my grandsons clambering for a turn on grandma's Incredible-- It's not just for calling anymore...

Please Pass The Courage

On Friday, Jan.21, I switched from oral chemo to a new kind of IV chemotherapy. Fortunately, I'm also off-track for the next two weeks. I'm nervous for a couple of reasons, One, Gemcitabine was not Dr. N's first med of choice for me. He would have preferred to use Carboplatin,which is given less often, with fewer long-term side effects. But my insurance company did not approve Carboplatin. Because Dr. N. felt like it was more important to begin a treatment, rather than wait through the hassels of gaining approval, Gemcitabine was approved and administered. I've never had IV chemo without a port--a small internal device for receiving intense drugs that protects veins and arteries from damage. Than medicine stings! The seriousness of its potential danger was brought home to me when the nurse said, "You have a small bubble of residue there next to your IV site. Before you leave, be sure to wash it off carefully, and use soap!" Safe for veins but not for skin? Second, I'm still in my 30-treatment regime of radiation. I've never had radiation simultaneously with chemotherapy before. Each treatment has its own share of side-effects. I've been tired and I'm beginning the rash and sores that indicate that my burns are ready to surface. I'm worried that I won't be able to stay healthy enough to keep teaching and going to college with all this going on at the same time. My nurse almost administered Carboplatin, even though it wasn't approved. I had to tell her. It took three sticks to get the IV going. She forgot my introductory kit and my support meds. She also didn't tell me I would need to have Dexamethasone first, to protect me from nausea. Here comes electric blood again! I'm so glad that Emily was with me. She is an art-line tech, accustomed to the needles, bags, lines, smells and inconveniences of IV drug administration. She made sure I was warm, got me drinks, kept me awake and distracted with happy conversation. I don't know what I'd do without that sweet daughter. She had been up since 5:30 working, but unselfishly gave her time to me. I love you for that Em. Thank you. "Gird up your loins, fresh courage take..."

Composure

I've felt pretty good about my sense of control so far as I've faced cancer. But Friday afternoon, I got a glimpse of the real me. The new chemotherapy that Dr. N prescribed for me was not authorized by my insurance company. So, two hours before I was to begin new IV treatment, I was notified that I couldn't have this medicine. The gods had spoken! I did not feel happy. It's fairly common knowledge that I'm not usually a confrontational person. I can't even make my visiting teaching appointments on the phone(I might be interrupting someone's only chance to nap!)But all heck broke loose inside my little chemo-fried brain as I tried to communicate with the insurance company and then the doctor. Dr. N said, "yeah, my staff said you were a little...um, frustrated." I was WRETCH-ED! What makes an insurance company more knowledgeable, more POWERFUL than an ONCOLOGIST--the most god-esque of doctors?! Is it a matter of EXPENSE? They talked about "not commonly used as a stage 1 medication...other equally effective medications authorized...letter of appeal using "medical necessity" etc. But Dr. N did not appeal. He just rolled over and let them approve another more long-term compromising, more immune-depressing, more inconvenient, less desirable chemotherapy. You're glad you aren't living in my head because there's an annoying shouter going off in there that won't be quiet. It's left me to wonder what ever happened to "composure". Or trust. Or compliance. Have I been screaming from the beginning and I'm just now hearing myself?

Signing Off 2010

We had a great Christmas holiday with Adam and Andrea and the little girls staying here until Dec. 30. The agenda was full, but we managed to recreate the Nativity, decorate cookies, see Tangled, "do playdough", enjoy the lights at Temple Square, attend a birthday party and even curl up for a book or two. In the meantime, we got our honeymooners back Christmas Eve (Christmas can be so anticlimactic when upstaged by one's wedding!)We had more family fun at Em and Dave's on New Year's Eve where we burned all our regrets from the previous year (in my case--bonfire!) Results are back on the latest PET/CT and I have more lung spots. I hope Dr. N has some really good ideas when I meet with him Monday. Radiation is going well in spite of headaches, low immunity and I am TIRED. Hurray for Septra! I signed up for the new semester of Master's program. Less hours this time--12 was a LOT! The best event was a new grandson, Enoch Jonathan Thomas, born Dec. 28th. Thanks Erin and Jon--we LOVE those babies!

Sunday Diggin'

I didn't feel good today. I couldn't stay warm. Then, I couldn't stay cool. And my bones hurt. But after church I got inspired to join the neighborhood snow shoveling party. It felt so good to do something ACTIVE and FRESH! Blake was trying to remember the last time I shoveled--maybe the winter of 1988. Thanks to neighbors Merrill, Tammy and Susanne who made it fun to be digging together in the blizzard. I took a hot bath, went to bed early and now I'm up in the night, feeling much better, with no more chemo for a whole week! Maybe sleep is overrated--um,I have a little feeling it's not, and 6:30 cometh...so. Another shot of hot Airborne and I'm back to bed.

Thankful

A few more projects and papers behind me and I'm ok! The rat race isn't quite over yet--one more personal philosophy paper, two research papers and the final installment on an instructional design--I'm almost a person again! The storm has made me hurt all over (remember Nulasta?...ow!) but there's so much to be thankful for, who can complain? Things I'm thankful for: A patient, supportive buddie, a wonderful family, a great job, another round of chemotherapy completed, another semester almost over, another sweet grandson, almost cooked, another sweet daughter, almost married, another good son,almost connected, another Thanksgiving, still alive!

Stop This Train

Blake and I are riding out a horrific cold together. It's kind of pathetic, both of us lying in bed, hacking up a lung, wheezing and snorting, noses leaking, feeling like junk. But the good thing is, we're on the same time frame. I hope that means that when we're well, we won't have to wonder when the other will be starting up with the awful symptoms! I've been trying to rest a little while not completely avoiding my responsibilities to report cards, upcoming Parent/Teacher conferences, and the windup of Fall Semester (with accompanying projects, papers and on-line discussions all due simultaneously). The two cancer drugs I'm taking--Tamoxafin (to block estrogen), and Xeloda (oral chemotherapy), are making me feel proactive in the War Against Wayward Cells. I feel a little pregnant, wildly pseudo-menopausal, spread too thin in my life and I have a cold. Do you ever just feel like shouting "STOP THIS TRAIN!"?

DrainOut!

Hurray for DrainOut Day! My left-side cancer is a new kind! Of course I'll have two kinds of cancer...my drain's out and I feel like I can do anything. Which is good, because there is WAY too much TO DO in the next 48 hours! Too busy to write a decent post, so stay tuned until Thursday. I promise then, pics of the VA cuties, details of the vacation, and more cancer details.