Last night it had been my intent to write the usual funny and erudite blog, evoking laughter and tear-streaked admiration for the smiling courage of the author....
yeeeeeaaah.....well....not so much.
You see, this morning Don and I fly to O'ahu for my surgery tomorrow at 7:00 a.m. Wait, you say, isn't this good news?? Why, yes, say I, this is great news!! 'cept it is still.....(gulp!)
I have to admit to having a bit of a tiff with God yesterday. Okay. Less of a tiff than maybe a full-blown four-year old hissy fit. I had made my plans on how I would spend yesterday - and snorkeling would be the highlight. No. The conditions have been great for Surfing, so that means that shoreline snorkel sites are roughly BLECH! everywhere. Okay, Plan B: go to the aquarium, hang with sharks and rays and jellies and have a beautiful drive there. I grew to love the idea of me and God driving along the beautiful Honoapi'ilani (pronounced Ho-no-a-pi-i-la-ni) Highway as it hugs the wave drenched - yet murky - coastline. I could handle some important tasks along the way. I even spent some time painting and cleaning before leaving and just felt sooooo dandy as I took off. Only to have Don call and give me an appointment for yet ANOTHER DOCTOR!! Long story, but some of my regular prescriptions had been forgotten and I had to get into a doc to get new ones yada yada yada.
That was it. Meltdown triggered. I started the nutsiness in the McDonald's parking lot, having just gotten my $1.00 tropical ice tea for my lovely afternoon. After being rude to my wonderful husband (I'm so sorry, babe!!), I then headed to the highway to get my errands done, without following up by going to the aquarium to hang with sharks and rays and jellies.
I was done. This just tore it. I was angry....and there was nary a pot to scrub. We live in a community about 10-15 minutes norths of Lahaina Town, which was now my sole destination. So, I had those few minutes to scream at God at the top of my lungs. This was likely problematic - not because my Father was going to through lightning my way, but because I looked like a lunatic, and since I have a wide-open, top-down jeep and a pretty big voice, this meant I could be heard by....lots. By the time I approached my first stop, I had calmed down, and my merciful God just led me by the hand the rest of the day. I got every errand and task accomplished, and even had time to grab Ohana Tacos (if you're in Honokowai, don't miss it!!) for Greg and me (he had been a boat trip to Lana'i with a friend - but that's a different story), before my successful visit to the local on-call doc. Church last night was amazing. Loved and prayed over. All leading to this morning....
Don is getting fidgety as I write now, be cause we need to leave in a few and I am still in jammies. Poor guy! So let me sum up:
I am going to have surgery on Friday morning to replace my left femur. Don't know if it will be full or partial, but having checked out an online journal article, I was both grossed out and amazed. God made us some crazy-msart people to invent such things!! There is also an outside chance that they have to do the same to my right upper arm - but just an outside chance...I hope. I will be in traction for five days. swell..... And then we head home for our next big visit with the head onco (Dr. Labradoodle) to learn the results of the bone biopsy and hear the game plan.
I am not sure when I will be able to write again. Feels kind of tough giving up that part of my life. But the battle is important and I am ready. God has been so merciful and good to me!! My peace has returned because I lean on HIM!! If you don't know Him...seek Him.
Thank you for your loving, funny, encouraging e-mails and notes. They are an enormous blessing.
Gotta go. No time to edit. Enjoy the typos.
Thursday, September 27, 2012
Thursday, September 20, 2012
The Meaning of Joy
I am a funny person. That statement may seem at best obvious boasting, and at worst inaccurate, self-promoting arrogance. I prefer to think of it as....simply humble and honest.... I'll give you a moment to compose yourself...
BUT! It seems that my humor of late has been misinterpreted as denial or idiocy. Not so. In fact, there is a lot of reality and smartness in me. To that end, let me clarify a few things...
Please don't mistake my humor as not taking this disease seriously. I have nearly constant reminders that there is a monster inside me whose end game is to take my life. It reminds me of its presence with pain and weakness in what once was a powerful runner's leg, and with a growing dull ache in my right bicep. I know that within a few months, I will be in a bit of a mess because of radiation and chemo. But I know that God gave me my weird way of looking at things as a weapon against this beast. I laugh when things are funny - and many, many things are funny. I laugh because it helps. Laughter releases endorphins which are the body's God-given pain killers. Humor is an important part of my arsenal.
Please don't mistake my goofy way of looking at things as ignorance of the actual physiology of cancer. I happen to be a lover of science and medicine and was researching all of this before we even talked about it with any others. I understood lesion, metastasis, necrotic, calcification, soft tissue mass - all before knowing that these existed inside me. I'm a very smart girl.
Please don't mistake my calm for complacency. Like any warrior, I need to be focussed and calm in the face of the enemy. To panic or freak gives him (it) a foothold. My mind is preparing for the battle ahead. Calm is from the Lord. Panic....not. But that doesn't mean I sit and wait for the Lord to make phone calls or take tests. I am a compliant, pro-active patient. I push gently when pushing is needed. I respectfully pursue - but never assuming that my case is more important than others like me. I am building what will surely be long relationships with nurses, techs, receptionists, assistants, and doctors. When they see me coming, I want them to see the face of Christ, not a demanding buzz saw. I am a good advocate for myself, but there is something to the "catch more flies with honey than vinegar" philosophy. Being spazzed while I'm in pursuit of records or CD's of scans or the next appointment will do nothing to speed the process, let alone help me in this war.
Please don't mistake my patience for passivity. I am also extremely eager to get this party started, but I appreciate the hard work, diligence, and careful study that these remarkable people are putting into properly treating my cancer. I want them to have the exactly right weaponry. I don't want the doctors to use a bazooka when a pea shooter would do. Or, vice versa. I have been in awe of the responsiveness when I have asked for help, or have needed records. This ain't television, folks, where there is a disease discovered on week, the treatment the next week, and the third week either the patient croaks or has a miraculous recovery (followed, of course, by a dream wedding overlooking some body of water. I digress....a little....). No, this is reality. These tests take time - and I'm not the only game in town. I have said often how I feel treated like a rock star. Well, that's still true. But think of this as the Grammy Awards, where it all full of Paul McCartney's, Mick Jagger's, and Lady Gaga's. We are all rock stars - but sometimes, rock stars have to wait their turn.
Please don't mistake my peace for surrender - at least not to cancer. I do surrender my life to Christ. What He does with it is His choice. But there's a fight, and I believe He will heal me. But it is His choice as to when and how, not mine. There is great peace in that. Philippians 4:7 describes the "peace that passes all understanding", because, frankly, peace in this particular situation seems nonsensical in the eyes of the world. And with the peace, comes joy. Joy!
Finally, let me share about my champion, my hero, my advocate...my husband. Please, never, ever mistake his quiet nature as not caring enough. Don operates with a quiet determination. He is by my side as I travel to every test. He keeps this home running. He still goes to work every day - even though he only wants to spend time with me. Remember the craziness at the Honolulu Airport? Read between the lines. This was a man doing everything possible to care for his bride. He can control nothing of the disease that has invaded his wife's body, but he will leap tall buildings to find the ones who can. And he trusts, trusts, trusts the Living God who holds all of this in His mighty and merciful hands. Don is holding up his end of the vow he took almost 35 years ago. I am not alone.
The meaning of Joy is not happiness. Happiness is dependent on external happenings, situations, moods - more extrinsic. Joy comes from within, separate from situations - more intrinsic. (see, I told ya I was smart). Joy is one of the fruits of the Spirit. It is intangible, but so obvious in one who has it. I am not happy about what is going on inside of me. I am not all a-twitter about a bone biopsy and leg surgery and all that this entails. But God has given me joy. It may not make sense, but I feel Him like never before. He uses others around me to tell me how much He loves me. Joy.
So, I covet your prayers. It's an unknown road ahead. But God knows the way. He has given me humor and intelligence and calm and peace and JOY!!
Now, don't make me go all serious on you again....makes my head hurt....
BUT! It seems that my humor of late has been misinterpreted as denial or idiocy. Not so. In fact, there is a lot of reality and smartness in me. To that end, let me clarify a few things...
Please don't mistake my humor as not taking this disease seriously. I have nearly constant reminders that there is a monster inside me whose end game is to take my life. It reminds me of its presence with pain and weakness in what once was a powerful runner's leg, and with a growing dull ache in my right bicep. I know that within a few months, I will be in a bit of a mess because of radiation and chemo. But I know that God gave me my weird way of looking at things as a weapon against this beast. I laugh when things are funny - and many, many things are funny. I laugh because it helps. Laughter releases endorphins which are the body's God-given pain killers. Humor is an important part of my arsenal.
Please don't mistake my goofy way of looking at things as ignorance of the actual physiology of cancer. I happen to be a lover of science and medicine and was researching all of this before we even talked about it with any others. I understood lesion, metastasis, necrotic, calcification, soft tissue mass - all before knowing that these existed inside me. I'm a very smart girl.
Please don't mistake my calm for complacency. Like any warrior, I need to be focussed and calm in the face of the enemy. To panic or freak gives him (it) a foothold. My mind is preparing for the battle ahead. Calm is from the Lord. Panic....not. But that doesn't mean I sit and wait for the Lord to make phone calls or take tests. I am a compliant, pro-active patient. I push gently when pushing is needed. I respectfully pursue - but never assuming that my case is more important than others like me. I am building what will surely be long relationships with nurses, techs, receptionists, assistants, and doctors. When they see me coming, I want them to see the face of Christ, not a demanding buzz saw. I am a good advocate for myself, but there is something to the "catch more flies with honey than vinegar" philosophy. Being spazzed while I'm in pursuit of records or CD's of scans or the next appointment will do nothing to speed the process, let alone help me in this war.
Please don't mistake my patience for passivity. I am also extremely eager to get this party started, but I appreciate the hard work, diligence, and careful study that these remarkable people are putting into properly treating my cancer. I want them to have the exactly right weaponry. I don't want the doctors to use a bazooka when a pea shooter would do. Or, vice versa. I have been in awe of the responsiveness when I have asked for help, or have needed records. This ain't television, folks, where there is a disease discovered on week, the treatment the next week, and the third week either the patient croaks or has a miraculous recovery (followed, of course, by a dream wedding overlooking some body of water. I digress....a little....). No, this is reality. These tests take time - and I'm not the only game in town. I have said often how I feel treated like a rock star. Well, that's still true. But think of this as the Grammy Awards, where it all full of Paul McCartney's, Mick Jagger's, and Lady Gaga's. We are all rock stars - but sometimes, rock stars have to wait their turn.
Please don't mistake my peace for surrender - at least not to cancer. I do surrender my life to Christ. What He does with it is His choice. But there's a fight, and I believe He will heal me. But it is His choice as to when and how, not mine. There is great peace in that. Philippians 4:7 describes the "peace that passes all understanding", because, frankly, peace in this particular situation seems nonsensical in the eyes of the world. And with the peace, comes joy. Joy!
Finally, let me share about my champion, my hero, my advocate...my husband. Please, never, ever mistake his quiet nature as not caring enough. Don operates with a quiet determination. He is by my side as I travel to every test. He keeps this home running. He still goes to work every day - even though he only wants to spend time with me. Remember the craziness at the Honolulu Airport? Read between the lines. This was a man doing everything possible to care for his bride. He can control nothing of the disease that has invaded his wife's body, but he will leap tall buildings to find the ones who can. And he trusts, trusts, trusts the Living God who holds all of this in His mighty and merciful hands. Don is holding up his end of the vow he took almost 35 years ago. I am not alone.
The meaning of Joy is not happiness. Happiness is dependent on external happenings, situations, moods - more extrinsic. Joy comes from within, separate from situations - more intrinsic. (see, I told ya I was smart). Joy is one of the fruits of the Spirit. It is intangible, but so obvious in one who has it. I am not happy about what is going on inside of me. I am not all a-twitter about a bone biopsy and leg surgery and all that this entails. But God has given me joy. It may not make sense, but I feel Him like never before. He uses others around me to tell me how much He loves me. Joy.
So, I covet your prayers. It's an unknown road ahead. But God knows the way. He has given me humor and intelligence and calm and peace and JOY!!
Now, don't make me go all serious on you again....makes my head hurt....
Wednesday, September 12, 2012
The De-Calibrated Life
CALIBRATE: to standardize (as a measuring instrument) by determining the deviation from a standard so as to ascertain the proper correction factors; to adjust precisely for a particular function; to measure precisely; especially: to measure against a standard
Let's face it. We are all attached to our routines. Even the most free-spirited, artsy-fartsy, fly-by-the-seat-of-one's-pants individual has consistent things in their lives upon which they balance the rest. It could be as broad as the seasons, or as minute (and maybe neurotic) as the precise schedule of the before-work morning ritual. having a certain amount of predictability in important aspects of our lives allows us the freedom of, well, sort of planned spontaneity. It's our individual calibration that we all live by - even those who deny so. And when life throws us curveballs and disasters or surprises, we flounder for a time until we re-calibrate, so we may begin ticking along in our new comfortable.
Don and I have had to recalibrate many times in our 35 years together. Sometimes for the good (marriage, children, moving, children, finances....and may I mention CHILDREN!!), and sometimes, for the not-so-good. But each times we adjusted our perspective and our internal clocks and moved on with life. Until now...for we have discovered......
The DE-calibrated Life.
When Don got this new job, we knew that it would bring many, many blessings - but there were also challenges. His days off, for instance. When he first started at Diamond, his days off were Tuesday and Wednesday making Monday his Friday and Wednesday his Sunday. The he got Saturday and Sundays off!! Praise God!! That not only meant that I got to go to church with my sweetie again, but every day was the actual day it was supposed to be!! Then, new sales team and new days off - Thursday and Friday - making Wednesday his Friday and Friday his Sunday. No sooner had we figured that one out than it changed again to Friday-Saturday days off. So now Thursday is Friday and Saturday is Sunday. Confused? Feel our pain....
In the midst of the last change was the diagnosis and the launch of the thrill ride through the land of oncology. We now had to try to organize our life around tests and visits and more tests and stuff and things and e-stinkin'-gad more tests!! talk about a loss of routine and comfortable. We have never, ever been more out of control of anything in our lives. And never have we felt such freedom.
Huh?? I know. You think it's the morphine speaking....ummm...writing. One might think, but one would be wrong. Since there is no "why" to be answered, since there is no cause to be discovered, since there is no blame to be laid - there is only moving on and doing what needs to be done. And being able to rest in the knowledge of God's ALL-ENCOMAPASSING POWER, brings me peace that can only be explained through Him.
So, now for the update and the what's up next: a week ago Wednesday, I got the awaited call from O'ahu to arrange for the P.E.T. scan. They wanted me there on Monday. Knowing that my M.E. (Medical Entourage) here was trying to get me in to see the O-cubed (Ortho Onco of O'ahu), which could mean we stay for a while so the surgery could be done, and that my sister was coming in on Tuesday, and we were supposed to have mani-pedi's (or as my beloved spells it, manny-petty) on Wednesday, and I wanted to have fun so could we not do it on Monday!?!?!?!? okay....so cooler, less silly heads prevailed, and plans were made for for us to fly out five days hence. The cool thing about this is that the insurance paid for my flight and cab, and we only had to pay for Don's flight. He could ride in the same cab with me. They also arranged for us to remain in Honolulu late so we could do something fun - not that having scans and stuff isn't just heap load o' chuckles! yee-haw. Anyway, more on that later....
Two days after we found out about the Honolulu trip was the biopsy for the soft tissue mass in my right thigh. This was to be yet another fasting test. Why do these people keep making me stop eating!?!?!?!? But we did have time to eat early in the morning, so Don took me to my favorite breakfast place on the island: Longhi's on Front Street, Lahaina. Grand Marnier French Toast....Coconut Syrup....blackberry preserves....side of the best bacon ANYWHERE.....and fresh, squeezed o.j...... Okay, so maybe this would hold me for six hours until my test. We managed to use up the time constructively for a while, then spent a couple hours at our Maui aquarium watching sharks and rays and jelly fish just move through the water which utter grace and ease. Yes, this IS how I relax!!
Finally, it was back to Maui Memorial and the crazy path from admissions to the refrigerated radiology department. Don got to freeze along side me this time. By this time, we also had noticed that our yummy morning meal - big and luscious as it was - was no longer keeping our tummies satisfied. We were hungry. In earnest. The tv in the waiting room had on the travel channel. About cruise ships. About all the FOOD on cruise ships. Cruel and unusual.... The biopsy itself was not as bad as I expected - thanks to the capable and kind hands of the doctor...whose name is a mystery to me. There was also the perfect air of goofiness, even though it was a bit chilling to her the nurse say matter-of-factly "She's mets", meaning metastatic. hmmmm... But it got back to funny when I said something smartmouthy, and then we got going. The actual instrument sounded like a very cheap staple gun, and before too long, all was done. Being the practical sort, I pointed out to this kind man that I lived in Napili, and since we were here on this side (meaning Central Maui, 45 minutes away from home), would it be okay if we went and did shopping at Costco and Walmart? He looked at me and said "No.". No discussion. No "if you feel up to it. No "as long your husband puts you in a papoose". He then pointed out that he had just poked a rather significant hole next to a rather significant artery. In fact, I was not even allowed to ride back home sitting up, but reclined in the jeep. Yikes. Anyhow, I was finally released, and because I was a good girl, didn't fuss too much, and promised to ride home in reclined comfort rather than taking care of some much needed shopping, I was rewarded with three stickers and a straw. I was very, very good.
Saturday and Sunday flew by too quickly, and then Monday was upon us. Once again, I had to fast before this next test. Oh, yes - my "last meal" at 6:00 a.m. could only be boiled or baked protein. No dairy. No carbs. No fruit. No flavor. My intent was to have a boiled egg, but Greg had used the last of the eggs and forgot to tell us. Good thing he's ridiculously cute and an unbelievable blessing, otherwise,, I would not have like his chances of surviving the night. So my breakfast? I had some cooked cocktail shrimp. Cold. With lemon. Nasty... But it got me by.
Since I have finally acknowledged that perhaps it might be in my best interest to behave as though my leg is not fully functional/reliable, I have gotten a cane (a cool wooden one, though not a magic Harry Potter one like my great-nephew thought I should get) and a handicapped parking placard - which makes me the first to get the invite to all girls' shopping trips and movie nights. This also meant wheelchair at the airport. In San Diego, getting a wheelchair means reserving one and having your own driver, as it were. In Maui, they point you to the stand of wheelchairs, you take one you like, and whomever your traveling companion is gets to be your chauffeur. Don't know what you do if you're alone. So, there we were, with only three carry-ons. Yes, I know that we were only supposed to be there one day, but this time my hubby insisted that we pack for the possibility of staying for the consult with O-cubed and the surgery to follow. That still meant my two chic olive stackables on wheels and his very butch small duffel. My spouse is extremely coordinated (making up for my lack thereof), and in no time he was pushing with one hand and pulling with the other while I had the duffel on my lap.
Everything went smooth as silk, quick as a bunny, no bumps - including the freakishly smooooooth flight - until we got to Honolulu. Honolulu. Home of Five-O. Land of Aloha. And also one of the largest cities in the U.S. and recent prize winner of the worst traffic in the nation. I think the last statistics have reeeeeally messed with the Aloha Spirit. The arrival was fine, and we were met by a friendly chap driving my wheels. Don had only to call the designated cab company and simply intone my name and ALA-KAZAM!! Our friendly chariot would appear. yeeeeeaaaahhhh,,,,not so much. Don called the magic number. Don invoked the name, Denise Dalton. The operator responded..."who!?!?" They had no record. So Don called the Imaging place which had expertly arranged all travel. They called the cab company. Again. Don called the cab company. Again. In five minutes, the cab company had lost my name. Again. My husband firmly but politely suggested that they write it down. They finally relented and sent a cab.
I have gotten used to Maui's little and efficient airport. I can't speak for other days, but on this day, Honolulu International was neither. Don followed the directions to the area outside Baggage Claim B, passing through Baggage Claim C. Keep in mind, he is still doing the push and pull and carry and stuff with his seemingly able-bodied wife. We make it out to the curb outside Baggage Claim B. Don called the cab company. again. They lost my name. AGAIN. But then they found it. Then began a series of actions that combine Three Stooges, I love Lucy, and the Amazing Race. The voice from the cab said we had to move to the cab stand. This meant pushing/pulling across a street in one of these lower level of an airport departure/arrival garages We went to the cab stand. The young lady there, with NO aloha, began yelling at us that we couldn't be there, that this was for paid fares only. We went back across the street, Don pushing and pulling - and now trying to get the cab company on the phone. Again. This time they had not lost my name, just their cabbie. So, now my husband is pushing/pulling/talking on the phone to a cabbie - for whom English is not a language yet mastered. We see him coming down the drive. Hallelujah! he slowed....said something through the open window about not being allowed to stop there...follow him..... So, Don begins his best to push/pull us to the cab - who keeps moving off anytime we get close! I also have to stop my harried hubby from running my off the sidewalk in his haste to get us to the fleeing cab. Finally, the cab pulls away entirely, leaving us in the proverbial dust and the literal exhaust. At this point, Don parks me, and slowly walks away while talking on the phone. My beloved is a very patient man in most circumstances. But...I noticed as he walked away, his voice got a little more loud with every step he took away from me. Keep in mind, this is in one of those echoey giant garage-y structures, so the acoustics are AWESOME!! I couldn't hear much except Don asking if this guy could not see the lady in the wheelchair (we were totally by ourselves, wheelchair or no) and other stuff, which my husband later confessed to me had a little something to do with the cabbie's training. After a bit, we saw this guy parked beyond Baggage Claim C - right where we had started!
Now, I know I look like a healthy girl, but I would think that the cane and the wheelchair might hint that something was not quite nimble with this particular fare, and given the destination as Hawaii Advanced Imaging, the dots should have been close enough for anyone to connect. Apparently not. The cabbie not only didn't help me in, but he proceeded to lecture Don on the high fines given to cabbies who stop at the spot where DON WAS TOLD TO WAIT!! We got in the car, and had a nice Mr. Toad ride to the imaging place. He still was muttering things about fines, but I just finally looked grumpy enough that he stayed quiet - until he pulled up to the address. We still had no idea where we were, and there was no sign on the outside indicating that this was the right place. Instead of giving us a moment, this guy unceremoniously unloaded us, STILL LECTURING MY HUSBAND, and took off.
After finding me a planter wall to sit on, Don wandered this beautiful and contemporary plaza - that was chalk full of restaurants and other eateries. Remember!?!? Fasting!?!? He found our destination and escorted me over, still pulling, although no longer having to push. When we landed in Honolulu, it was 10:00 a.m. I didn't have check-in until noon, and we had been wondering how we would kill the time. We arrived at 11:40....
In this process, I have had so many tests that I am now almost qualified to give them. But of all the tests, this is by far my favorite. Why, you ask?? Because there was a great deal of napping involved. The nurse handling my prep was awesome and hilarious. She had my bundle up in my sweats and fuzzy socks (I just looked like a Pink Disney Michelan man), then brought forth yet another vial encased in lead. I said I really am going to be my own Weapon of Mass Destruction. She assured me all would be fine as long as I didn't run through the airport yelling "Jihad!!". After injecting me, she said she had to see if it took, then turned off the lights to look for the glow. I LOVE this woman!! After I was properly infused with Radioactive Glucose, I then had one hour of dark and quiet and calm. Nap. When it was my turn for the test, I was bundled up some more, and put into a larger, semi-open tube, that whirred and purred, instead of the cacophonous din of the MRI. More nap. When that was done, she brought me "steak and lobster": two granola bars and OJ. Yes, by far my favorite test.
The rest of our time in Honolulu was to be spent watching the Chargers at Islands Restaurant in Ala Moana Center - which meant another cab ride. Oh, Lord.... But God was gracious, providing a lovely, solicitous gentleman named Woo (pronounced oo), who drove gently, dropped us off EXACTLY where we wanted, then picked us up for the ride back to the airport later that night. In the end, we got medical stuff done - although no Dr. O-cubed - had a fun time watching our Chargers beat the Raiders, and came home with an adventure to tell.
We had our next visit with Dr. Altaha (Dr. Labradoodle) early Tuesday. This one had us all a bit tight, be we knew God was in control. God also reminded us of HIS control and our need to trust Him by letting us get stuck in back up due to an accident on our one two-lane highway from the westside. We arrived late - as did many of the day's appointments - but were once again treated with warmth and compassion.
So, the scoop: the soft tissue mass was inconclusive, as all the material was simply necrotic. Look it up. The definition is roughly: eeeeeeeaaauuuuuwwwww grooooosss!! But this means that they will have to go into the bone for the next biopsy. Waiting for the time on that. The P.E.T. scan showed no new surprises (YAY!) but the ones that exist are enough. I have the one biggie in my left femur, one small in my right., one small in my lower spine, one bigger in my mid spine, and one in the right upper arm. This means I am a Stage Four. But that's okay. God's got this. I had one more MRI on my spine (the girl actually asked me if I had an MRI before, and I was tempted to ask: "You mean today??") that showed a clearer shot of the oogie on the spine. I should hear from Dr. O-cubed tomorrow or the next day - which means, be ready to go on very short notice. He will take out icky bone and replace it with a metal rod. Wonder if refrigerator magnets will work...???
So, back to our de-calibrated life. It's a good life. In fact, it's a very good life. We are blessed beyond anything either of us could have asked or imagined - but that's simply the way our Heavenly Father works. What I want from Him is full and perfect healing!! But then again...what I want is nothing less than what HE wants for me!!
Many years ago, as Don and I changed our diet for the healthier, I adopted my "Six-Months-to-Live Eating Plan" - meaning, if Dr. Wonderful said, "Denise, six months from now, your ticket is punched and you're goin' home!!", I would start gnoshing on jack-in-the Box tacos and stuffed jalapenos, a can of Pringles a day, and double stuff Oreos and pretty much any of the Mother's Cookies brand. After our visit with Dr. Altaha, we were finally able to make that much-needed trip to Costco. As we were cruising toward checkout, going down aisles of yumminess, I pointed out to Greg the stacks of Mother's Iced Oatmeal cookies next to the Oreo Double Stuff - and kept on moving. In our cart? Tomatoes, and fruit and beautiful mushrooms and bananas and spinach.
Yup....I plan to be here a long while....
Let's face it. We are all attached to our routines. Even the most free-spirited, artsy-fartsy, fly-by-the-seat-of-one's-pants individual has consistent things in their lives upon which they balance the rest. It could be as broad as the seasons, or as minute (and maybe neurotic) as the precise schedule of the before-work morning ritual. having a certain amount of predictability in important aspects of our lives allows us the freedom of, well, sort of planned spontaneity. It's our individual calibration that we all live by - even those who deny so. And when life throws us curveballs and disasters or surprises, we flounder for a time until we re-calibrate, so we may begin ticking along in our new comfortable.
Don and I have had to recalibrate many times in our 35 years together. Sometimes for the good (marriage, children, moving, children, finances....and may I mention CHILDREN!!), and sometimes, for the not-so-good. But each times we adjusted our perspective and our internal clocks and moved on with life. Until now...for we have discovered......
The DE-calibrated Life.
When Don got this new job, we knew that it would bring many, many blessings - but there were also challenges. His days off, for instance. When he first started at Diamond, his days off were Tuesday and Wednesday making Monday his Friday and Wednesday his Sunday. The he got Saturday and Sundays off!! Praise God!! That not only meant that I got to go to church with my sweetie again, but every day was the actual day it was supposed to be!! Then, new sales team and new days off - Thursday and Friday - making Wednesday his Friday and Friday his Sunday. No sooner had we figured that one out than it changed again to Friday-Saturday days off. So now Thursday is Friday and Saturday is Sunday. Confused? Feel our pain....
In the midst of the last change was the diagnosis and the launch of the thrill ride through the land of oncology. We now had to try to organize our life around tests and visits and more tests and stuff and things and e-stinkin'-gad more tests!! talk about a loss of routine and comfortable. We have never, ever been more out of control of anything in our lives. And never have we felt such freedom.
Huh?? I know. You think it's the morphine speaking....ummm...writing. One might think, but one would be wrong. Since there is no "why" to be answered, since there is no cause to be discovered, since there is no blame to be laid - there is only moving on and doing what needs to be done. And being able to rest in the knowledge of God's ALL-ENCOMAPASSING POWER, brings me peace that can only be explained through Him.
So, now for the update and the what's up next: a week ago Wednesday, I got the awaited call from O'ahu to arrange for the P.E.T. scan. They wanted me there on Monday. Knowing that my M.E. (Medical Entourage) here was trying to get me in to see the O-cubed (Ortho Onco of O'ahu), which could mean we stay for a while so the surgery could be done, and that my sister was coming in on Tuesday, and we were supposed to have mani-pedi's (or as my beloved spells it, manny-petty) on Wednesday, and I wanted to have fun so could we not do it on Monday!?!?!?!? okay....so cooler, less silly heads prevailed, and plans were made for for us to fly out five days hence. The cool thing about this is that the insurance paid for my flight and cab, and we only had to pay for Don's flight. He could ride in the same cab with me. They also arranged for us to remain in Honolulu late so we could do something fun - not that having scans and stuff isn't just heap load o' chuckles! yee-haw. Anyway, more on that later....
Two days after we found out about the Honolulu trip was the biopsy for the soft tissue mass in my right thigh. This was to be yet another fasting test. Why do these people keep making me stop eating!?!?!?!? But we did have time to eat early in the morning, so Don took me to my favorite breakfast place on the island: Longhi's on Front Street, Lahaina. Grand Marnier French Toast....Coconut Syrup....blackberry preserves....side of the best bacon ANYWHERE.....and fresh, squeezed o.j...... Okay, so maybe this would hold me for six hours until my test. We managed to use up the time constructively for a while, then spent a couple hours at our Maui aquarium watching sharks and rays and jelly fish just move through the water which utter grace and ease. Yes, this IS how I relax!!
Finally, it was back to Maui Memorial and the crazy path from admissions to the refrigerated radiology department. Don got to freeze along side me this time. By this time, we also had noticed that our yummy morning meal - big and luscious as it was - was no longer keeping our tummies satisfied. We were hungry. In earnest. The tv in the waiting room had on the travel channel. About cruise ships. About all the FOOD on cruise ships. Cruel and unusual.... The biopsy itself was not as bad as I expected - thanks to the capable and kind hands of the doctor...whose name is a mystery to me. There was also the perfect air of goofiness, even though it was a bit chilling to her the nurse say matter-of-factly "She's mets", meaning metastatic. hmmmm... But it got back to funny when I said something smartmouthy, and then we got going. The actual instrument sounded like a very cheap staple gun, and before too long, all was done. Being the practical sort, I pointed out to this kind man that I lived in Napili, and since we were here on this side (meaning Central Maui, 45 minutes away from home), would it be okay if we went and did shopping at Costco and Walmart? He looked at me and said "No.". No discussion. No "if you feel up to it. No "as long your husband puts you in a papoose". He then pointed out that he had just poked a rather significant hole next to a rather significant artery. In fact, I was not even allowed to ride back home sitting up, but reclined in the jeep. Yikes. Anyhow, I was finally released, and because I was a good girl, didn't fuss too much, and promised to ride home in reclined comfort rather than taking care of some much needed shopping, I was rewarded with three stickers and a straw. I was very, very good.
Saturday and Sunday flew by too quickly, and then Monday was upon us. Once again, I had to fast before this next test. Oh, yes - my "last meal" at 6:00 a.m. could only be boiled or baked protein. No dairy. No carbs. No fruit. No flavor. My intent was to have a boiled egg, but Greg had used the last of the eggs and forgot to tell us. Good thing he's ridiculously cute and an unbelievable blessing, otherwise,, I would not have like his chances of surviving the night. So my breakfast? I had some cooked cocktail shrimp. Cold. With lemon. Nasty... But it got me by.
Since I have finally acknowledged that perhaps it might be in my best interest to behave as though my leg is not fully functional/reliable, I have gotten a cane (a cool wooden one, though not a magic Harry Potter one like my great-nephew thought I should get) and a handicapped parking placard - which makes me the first to get the invite to all girls' shopping trips and movie nights. This also meant wheelchair at the airport. In San Diego, getting a wheelchair means reserving one and having your own driver, as it were. In Maui, they point you to the stand of wheelchairs, you take one you like, and whomever your traveling companion is gets to be your chauffeur. Don't know what you do if you're alone. So, there we were, with only three carry-ons. Yes, I know that we were only supposed to be there one day, but this time my hubby insisted that we pack for the possibility of staying for the consult with O-cubed and the surgery to follow. That still meant my two chic olive stackables on wheels and his very butch small duffel. My spouse is extremely coordinated (making up for my lack thereof), and in no time he was pushing with one hand and pulling with the other while I had the duffel on my lap.
Everything went smooth as silk, quick as a bunny, no bumps - including the freakishly smooooooth flight - until we got to Honolulu. Honolulu. Home of Five-O. Land of Aloha. And also one of the largest cities in the U.S. and recent prize winner of the worst traffic in the nation. I think the last statistics have reeeeeally messed with the Aloha Spirit. The arrival was fine, and we were met by a friendly chap driving my wheels. Don had only to call the designated cab company and simply intone my name and ALA-KAZAM!! Our friendly chariot would appear. yeeeeeaaaahhhh,,,,not so much. Don called the magic number. Don invoked the name, Denise Dalton. The operator responded..."who!?!?" They had no record. So Don called the Imaging place which had expertly arranged all travel. They called the cab company. Again. Don called the cab company. Again. In five minutes, the cab company had lost my name. Again. My husband firmly but politely suggested that they write it down. They finally relented and sent a cab.
I have gotten used to Maui's little and efficient airport. I can't speak for other days, but on this day, Honolulu International was neither. Don followed the directions to the area outside Baggage Claim B, passing through Baggage Claim C. Keep in mind, he is still doing the push and pull and carry and stuff with his seemingly able-bodied wife. We make it out to the curb outside Baggage Claim B. Don called the cab company. again. They lost my name. AGAIN. But then they found it. Then began a series of actions that combine Three Stooges, I love Lucy, and the Amazing Race. The voice from the cab said we had to move to the cab stand. This meant pushing/pulling across a street in one of these lower level of an airport departure/arrival garages We went to the cab stand. The young lady there, with NO aloha, began yelling at us that we couldn't be there, that this was for paid fares only. We went back across the street, Don pushing and pulling - and now trying to get the cab company on the phone. Again. This time they had not lost my name, just their cabbie. So, now my husband is pushing/pulling/talking on the phone to a cabbie - for whom English is not a language yet mastered. We see him coming down the drive. Hallelujah! he slowed....said something through the open window about not being allowed to stop there...follow him..... So, Don begins his best to push/pull us to the cab - who keeps moving off anytime we get close! I also have to stop my harried hubby from running my off the sidewalk in his haste to get us to the fleeing cab. Finally, the cab pulls away entirely, leaving us in the proverbial dust and the literal exhaust. At this point, Don parks me, and slowly walks away while talking on the phone. My beloved is a very patient man in most circumstances. But...I noticed as he walked away, his voice got a little more loud with every step he took away from me. Keep in mind, this is in one of those echoey giant garage-y structures, so the acoustics are AWESOME!! I couldn't hear much except Don asking if this guy could not see the lady in the wheelchair (we were totally by ourselves, wheelchair or no) and other stuff, which my husband later confessed to me had a little something to do with the cabbie's training. After a bit, we saw this guy parked beyond Baggage Claim C - right where we had started!
Now, I know I look like a healthy girl, but I would think that the cane and the wheelchair might hint that something was not quite nimble with this particular fare, and given the destination as Hawaii Advanced Imaging, the dots should have been close enough for anyone to connect. Apparently not. The cabbie not only didn't help me in, but he proceeded to lecture Don on the high fines given to cabbies who stop at the spot where DON WAS TOLD TO WAIT!! We got in the car, and had a nice Mr. Toad ride to the imaging place. He still was muttering things about fines, but I just finally looked grumpy enough that he stayed quiet - until he pulled up to the address. We still had no idea where we were, and there was no sign on the outside indicating that this was the right place. Instead of giving us a moment, this guy unceremoniously unloaded us, STILL LECTURING MY HUSBAND, and took off.
After finding me a planter wall to sit on, Don wandered this beautiful and contemporary plaza - that was chalk full of restaurants and other eateries. Remember!?!? Fasting!?!? He found our destination and escorted me over, still pulling, although no longer having to push. When we landed in Honolulu, it was 10:00 a.m. I didn't have check-in until noon, and we had been wondering how we would kill the time. We arrived at 11:40....
In this process, I have had so many tests that I am now almost qualified to give them. But of all the tests, this is by far my favorite. Why, you ask?? Because there was a great deal of napping involved. The nurse handling my prep was awesome and hilarious. She had my bundle up in my sweats and fuzzy socks (I just looked like a Pink Disney Michelan man), then brought forth yet another vial encased in lead. I said I really am going to be my own Weapon of Mass Destruction. She assured me all would be fine as long as I didn't run through the airport yelling "Jihad!!". After injecting me, she said she had to see if it took, then turned off the lights to look for the glow. I LOVE this woman!! After I was properly infused with Radioactive Glucose, I then had one hour of dark and quiet and calm. Nap. When it was my turn for the test, I was bundled up some more, and put into a larger, semi-open tube, that whirred and purred, instead of the cacophonous din of the MRI. More nap. When that was done, she brought me "steak and lobster": two granola bars and OJ. Yes, by far my favorite test.
The rest of our time in Honolulu was to be spent watching the Chargers at Islands Restaurant in Ala Moana Center - which meant another cab ride. Oh, Lord.... But God was gracious, providing a lovely, solicitous gentleman named Woo (pronounced oo), who drove gently, dropped us off EXACTLY where we wanted, then picked us up for the ride back to the airport later that night. In the end, we got medical stuff done - although no Dr. O-cubed - had a fun time watching our Chargers beat the Raiders, and came home with an adventure to tell.
We had our next visit with Dr. Altaha (Dr. Labradoodle) early Tuesday. This one had us all a bit tight, be we knew God was in control. God also reminded us of HIS control and our need to trust Him by letting us get stuck in back up due to an accident on our one two-lane highway from the westside. We arrived late - as did many of the day's appointments - but were once again treated with warmth and compassion.
So, the scoop: the soft tissue mass was inconclusive, as all the material was simply necrotic. Look it up. The definition is roughly: eeeeeeeaaauuuuuwwwww grooooosss!! But this means that they will have to go into the bone for the next biopsy. Waiting for the time on that. The P.E.T. scan showed no new surprises (YAY!) but the ones that exist are enough. I have the one biggie in my left femur, one small in my right., one small in my lower spine, one bigger in my mid spine, and one in the right upper arm. This means I am a Stage Four. But that's okay. God's got this. I had one more MRI on my spine (the girl actually asked me if I had an MRI before, and I was tempted to ask: "You mean today??") that showed a clearer shot of the oogie on the spine. I should hear from Dr. O-cubed tomorrow or the next day - which means, be ready to go on very short notice. He will take out icky bone and replace it with a metal rod. Wonder if refrigerator magnets will work...???
So, back to our de-calibrated life. It's a good life. In fact, it's a very good life. We are blessed beyond anything either of us could have asked or imagined - but that's simply the way our Heavenly Father works. What I want from Him is full and perfect healing!! But then again...what I want is nothing less than what HE wants for me!!
Many years ago, as Don and I changed our diet for the healthier, I adopted my "Six-Months-to-Live Eating Plan" - meaning, if Dr. Wonderful said, "Denise, six months from now, your ticket is punched and you're goin' home!!", I would start gnoshing on jack-in-the Box tacos and stuffed jalapenos, a can of Pringles a day, and double stuff Oreos and pretty much any of the Mother's Cookies brand. After our visit with Dr. Altaha, we were finally able to make that much-needed trip to Costco. As we were cruising toward checkout, going down aisles of yumminess, I pointed out to Greg the stacks of Mother's Iced Oatmeal cookies next to the Oreo Double Stuff - and kept on moving. In our cart? Tomatoes, and fruit and beautiful mushrooms and bananas and spinach.
Yup....I plan to be here a long while....
Monday, September 3, 2012
No Cape, nor Coordinating Tights....
It has occurred to me in the past couple of weeks that people around me are starting to look at me a little funny. I mean, funnier than usual. And it makes me a little squirmy. What tends to surprise most people about me is that, even though I am outgoing, i am actually a rather private person when it comes to some stuff. I don't have a problem sharing the good stuff. I don't even have that much of an issue being transparent in the innumerable ways I screw up. But when it comes to difficulties, challenges, and bad stuff that comes our way....both Don and I tend to play it pretty close to the vest. So, when it came time to "go public", as my friend and pastor, Steve, says, it gave me some serious heebie-jeebies.
So, now most everyone knows of the new Big Adventure for Denise and Don, and I find that I am the recipient of many loving and positive notes and hugs and Facebook posts - and I love 'em, keep 'em coming!! But I also find myself, in more than a few cases, being given a status of near super-hero. Seriously. Don't laugh. But in the loving eyes of a few, it seemed that the cancer diagnosis came with a cape, coordinating tights, and a snappy looking mask. Not so much....
I would like to think that most of my perceived bravery comes from my faith in God. this morning my Facebook post quotes one of the all-time great scriptures, Romans 8:28: "For we know that God cause all things to work together for good to those who love the Lord, who are called according to His purpose". Awesome verse. Awesomer chapter. Check it out. Anyway, so i would like to think that this is the source of that heroic glow that I seem to have floating around me.
But, unfortunately, I think it is mostly still shell-shock. Three short weeks ago this morning, I was happy to have my MRI done so it could show the soft tissue injury in my left hip. It was Don't day off, and we had a great day planned. Duh. We live in Maui. So, I get a call from the MRI place. Come in for a CONTRAST MRI. This morning. Two and a half hours from now. See, I've watched enough Medical Center and Soap Operas to know that this is NEVER, EVER GOOD!! But in we went. The next morning was the call from my ortho (Asian Doogie) telling me about the tumor. Tumors.
To say a dark curtain came down at that moment might sound right, because that is how our spirits felt, but the dropping of a curtain comes at the end of a performance. Our curtain was just rising. By that afternoon, our show, the crazy roller coaster ride had begun in earnest.
SInce then, I have had my moments of being awake and lucid and clear-headed where I am just downright ticked off at this. A few days ago was a good one. Have you ever noticed how women will clean when they are perturbed? Well, that was me. The menfolk were off seeing the latest Bourne movie, and it was just me and the dog and all my pent up indignation. I found a couple of innocent skillets that needed some attention, grabbed an S.O.S. pad (how ironic/appropriate), and started in as I had my chat with God.
"Dear Lord," (scrub-scrubber-scrub), "You know how I said I will be blessed to be used by You for Your glory?" (scrubbedy-scrub-rinse), "I CHANGED MY MIND!!" (scurbby-scrub-rinse-scrub-rinse-CLANG!) "You know how I said I felt humbled to be chosen by You for such a thing as this?" (new skillet - scrubbedy-scrub-scrub) "CHOOSE SOMEONE ELSE!" By the time I was finished with this completely rational, totally reasonable exchange with the Lord, I had cried myself to calm - and had two skillets so shiny and brilliant you could use the reflection to pick stuff out of your teeth.
I do not like this. I do not want this. But here it is. I am in it. And God is with me. Always.
The process itself keeps moving at rather break-neck speed. I got a call from the P.E.T. scan people in O'ahu, and I am set up for Monday morning, so the results will be ready Tuesday morning when when meet with Dr. Labradoodle....Dr Altaha.....I have my biopsy tomorrow morning on the soft tissue ick so they can discern (hopefully) what kind of ick it is exactly so they can use the right anti-ick therapy.
Yesterday, we met with my radiation oncologist, Dr. Diane Tsai - pronounced "sigh" tsorta. Anyway, before we met with her, we had an opportunity to once again sit and wait. We were there toward the end of lunch hour, and so had the chance to sit and observe as the office came to life. In a room opposite where we sat were several comfortable chairs - teal blue leather (pleather??!!?) Lazyboys. The sign on the door read: "Medical Oncology", and we watched as a few people came in sat down, and had their medicine plugged into the ports implanted near their collarbones. Nary a frown in the group. There is a directory near the front doors of the department, and one heading reads: "Tumor Registration". Really?? You can register for a tumor like your wedding gift!?!? Yes, I will take my little barcode-reading gun and choose....the teak salad bowl set.....the ivory pillar candles....8-piece fluted stemware....and a 3-piece set of matching tumors!! Who knew?!?!
Our turn came rather quickly - never have had to wait too long - and met the newest membership of our medical entourage. Pretty soon there will be special blazers, membership cards, and a secret handshake. Dr. Tsai is yet another young and energetic doctor - and with a sweet sense of fashion in her cute little black flair skirt. I appreciate that! She is also a foodie. I appreciate that more! But we actually did talk medicine and cancer and radiation and stuff, too.
Turns out that my femur (thigh bone, for those of you who never watched ER) is pretty much trash, thanks to this tumor that has been hiding there for a while. I am almost certain to need surgery to carve out the bad stuff and put in a rod. As Greg said, looks like I'm still goin' bionic! The question is to do it before or after radiation, and should my Asian Doogie Howser do it here on Maui, or should I go to the big shot ortho onco on O'ahu (I LOVE the syncopation - gotta be a song!). Personally, I choose here and my A.D.H., but those decisions will be made by smarter people than me.
The good news for me is that my radiation treatment should be about 3-5 weeks, and each tumor only gets zapped for 1-5 minutes. I even can drive myself! So, radiation is going to be a lot easier than I expected. When Don and I were reading about side effects and managing them, it said to STAY OFF THE BEACH AND OUT OF SALT WATER. I was so cranked up about that, angry to the point of tears, before the doctor came in and said basically "Eh, don't worry about it. Sunscreen. No hot tubs. Go for it" The other fun thing is that i am going to get TATTOOS!! Fifty-seven. A Grandmother. I'm gettin' my first ink... Actually, it's little dots to make sure that the radiation beam shoots in the same place each time. Yes, you don't want to be misfiring these guys.
The not-quite-so-good news is that chemo is looking more likely. All of these decisions will be made after the biopsy tomorrow and the P.E.T. scan on Monday. I am even on the agenda for Friday's Tumor Board. Do they sit around and do their best Arnold - "It IS a toomah!" "Yes, but vat kind off toomah?"...
So, the ride goes on. And back to my original thought....oh-so-long-ago....I don't like this much. I don't like being transparent about my warts. But I hate being transparent about my needs. I try to help out others when I can. I loathe the idea of asking for help. I have my days and times of being funny and semi-brave. I have days and times, more than I want to admit, of being sad, demanding, and Princess Weenie Pants. I am discovering that there are a ton of things that are going to happen that are going to rob me of my pride - and that's a good thing. There are also things in my private life that will no longer be so. Not so sure how good that is.
I know God will use me in this, and yes, I really do feel His blessing and presence - but He gave me no Superhero costume. You see, the battle isn't mine to win. it is His - and He already has.
So, now most everyone knows of the new Big Adventure for Denise and Don, and I find that I am the recipient of many loving and positive notes and hugs and Facebook posts - and I love 'em, keep 'em coming!! But I also find myself, in more than a few cases, being given a status of near super-hero. Seriously. Don't laugh. But in the loving eyes of a few, it seemed that the cancer diagnosis came with a cape, coordinating tights, and a snappy looking mask. Not so much....
I would like to think that most of my perceived bravery comes from my faith in God. this morning my Facebook post quotes one of the all-time great scriptures, Romans 8:28: "For we know that God cause all things to work together for good to those who love the Lord, who are called according to His purpose". Awesome verse. Awesomer chapter. Check it out. Anyway, so i would like to think that this is the source of that heroic glow that I seem to have floating around me.
But, unfortunately, I think it is mostly still shell-shock. Three short weeks ago this morning, I was happy to have my MRI done so it could show the soft tissue injury in my left hip. It was Don't day off, and we had a great day planned. Duh. We live in Maui. So, I get a call from the MRI place. Come in for a CONTRAST MRI. This morning. Two and a half hours from now. See, I've watched enough Medical Center and Soap Operas to know that this is NEVER, EVER GOOD!! But in we went. The next morning was the call from my ortho (Asian Doogie) telling me about the tumor. Tumors.
To say a dark curtain came down at that moment might sound right, because that is how our spirits felt, but the dropping of a curtain comes at the end of a performance. Our curtain was just rising. By that afternoon, our show, the crazy roller coaster ride had begun in earnest.
SInce then, I have had my moments of being awake and lucid and clear-headed where I am just downright ticked off at this. A few days ago was a good one. Have you ever noticed how women will clean when they are perturbed? Well, that was me. The menfolk were off seeing the latest Bourne movie, and it was just me and the dog and all my pent up indignation. I found a couple of innocent skillets that needed some attention, grabbed an S.O.S. pad (how ironic/appropriate), and started in as I had my chat with God.
"Dear Lord," (scrub-scrubber-scrub), "You know how I said I will be blessed to be used by You for Your glory?" (scrubbedy-scrub-rinse), "I CHANGED MY MIND!!" (scurbby-scrub-rinse-scrub-rinse-CLANG!) "You know how I said I felt humbled to be chosen by You for such a thing as this?" (new skillet - scrubbedy-scrub-scrub) "CHOOSE SOMEONE ELSE!" By the time I was finished with this completely rational, totally reasonable exchange with the Lord, I had cried myself to calm - and had two skillets so shiny and brilliant you could use the reflection to pick stuff out of your teeth.
I do not like this. I do not want this. But here it is. I am in it. And God is with me. Always.
The process itself keeps moving at rather break-neck speed. I got a call from the P.E.T. scan people in O'ahu, and I am set up for Monday morning, so the results will be ready Tuesday morning when when meet with Dr. Labradoodle....Dr Altaha.....I have my biopsy tomorrow morning on the soft tissue ick so they can discern (hopefully) what kind of ick it is exactly so they can use the right anti-ick therapy.
Yesterday, we met with my radiation oncologist, Dr. Diane Tsai - pronounced "sigh" tsorta. Anyway, before we met with her, we had an opportunity to once again sit and wait. We were there toward the end of lunch hour, and so had the chance to sit and observe as the office came to life. In a room opposite where we sat were several comfortable chairs - teal blue leather (pleather??!!?) Lazyboys. The sign on the door read: "Medical Oncology", and we watched as a few people came in sat down, and had their medicine plugged into the ports implanted near their collarbones. Nary a frown in the group. There is a directory near the front doors of the department, and one heading reads: "Tumor Registration". Really?? You can register for a tumor like your wedding gift!?!? Yes, I will take my little barcode-reading gun and choose....the teak salad bowl set.....the ivory pillar candles....8-piece fluted stemware....and a 3-piece set of matching tumors!! Who knew?!?!
Our turn came rather quickly - never have had to wait too long - and met the newest membership of our medical entourage. Pretty soon there will be special blazers, membership cards, and a secret handshake. Dr. Tsai is yet another young and energetic doctor - and with a sweet sense of fashion in her cute little black flair skirt. I appreciate that! She is also a foodie. I appreciate that more! But we actually did talk medicine and cancer and radiation and stuff, too.
Turns out that my femur (thigh bone, for those of you who never watched ER) is pretty much trash, thanks to this tumor that has been hiding there for a while. I am almost certain to need surgery to carve out the bad stuff and put in a rod. As Greg said, looks like I'm still goin' bionic! The question is to do it before or after radiation, and should my Asian Doogie Howser do it here on Maui, or should I go to the big shot ortho onco on O'ahu (I LOVE the syncopation - gotta be a song!). Personally, I choose here and my A.D.H., but those decisions will be made by smarter people than me.
The good news for me is that my radiation treatment should be about 3-5 weeks, and each tumor only gets zapped for 1-5 minutes. I even can drive myself! So, radiation is going to be a lot easier than I expected. When Don and I were reading about side effects and managing them, it said to STAY OFF THE BEACH AND OUT OF SALT WATER. I was so cranked up about that, angry to the point of tears, before the doctor came in and said basically "Eh, don't worry about it. Sunscreen. No hot tubs. Go for it" The other fun thing is that i am going to get TATTOOS!! Fifty-seven. A Grandmother. I'm gettin' my first ink... Actually, it's little dots to make sure that the radiation beam shoots in the same place each time. Yes, you don't want to be misfiring these guys.
The not-quite-so-good news is that chemo is looking more likely. All of these decisions will be made after the biopsy tomorrow and the P.E.T. scan on Monday. I am even on the agenda for Friday's Tumor Board. Do they sit around and do their best Arnold - "It IS a toomah!" "Yes, but vat kind off toomah?"...
So, the ride goes on. And back to my original thought....oh-so-long-ago....I don't like this much. I don't like being transparent about my warts. But I hate being transparent about my needs. I try to help out others when I can. I loathe the idea of asking for help. I have my days and times of being funny and semi-brave. I have days and times, more than I want to admit, of being sad, demanding, and Princess Weenie Pants. I am discovering that there are a ton of things that are going to happen that are going to rob me of my pride - and that's a good thing. There are also things in my private life that will no longer be so. Not so sure how good that is.
I know God will use me in this, and yes, I really do feel His blessing and presence - but He gave me no Superhero costume. You see, the battle isn't mine to win. it is His - and He already has.
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