More News on the Radiation Front

My radiation oncologist called this afternoon.  It seems that there is a possibility that there may be a better machine in Albuquerque to do the radiation than the one in Santa Fe.  He called to ask me for permission to contact them and see about my going there for radiation.  Here's what that could mean:

• The other machine is supposed to be able to better pinpoint where the radiation hits, but my doc was going to check and make sure this was true.
• The docs in Albuquerque need to agree with the conclusions my radiation and medical oncologists have drawn about where to put the radiation before my current docs will agree to having me go to Albuquerque.
• The docs in Albuquerque will have to be able to get me in in a timely manner (meaning, soon) in order to keep me on schedule.
• The docs in Albuquerque will have to be able to prove that the change of venue would indeed make a significant difference in the radiation treatment to warrant my going that distance at this time of  year.

I was a bit taken aback by all of this today.  I had all my ducks in a row, and now they have been scattered across the pond!  I came to a place of peace about all of this yesterday in church - God had these songs lined up yesterday for worship:

•  "Come, Now is the Time to Worship" - I asked Him to help me focus on Him during the service rather than my fears and worries
• "Leaning on the Everlasting Arms" - one of my favorite hymns, and this is where God really began to speak.  One of the verses says, "What have I to dread?  What have I to fear? Leaning on the Everlasting Arms; I have blessed peace with my Lord so near, leaning on the Everlasting Arms."  At that moment, God whispered to my heart, "Am I still near?"  "Yes, Lord!" was my swift reply.  "Then why are you afraid?"  I had no answer.
• "Your Grace is Enough" - once again, He whispered to me, "Has my grace changed?"  "No, Lord!" was my swift reply.  "Then why are you worried?  My plan remains the same.  No matter what happens now or in the future, it is not a surprise to Me.  It has been filtered through My fingers.  And My strength will not change - it is from everlasting to everlasting, just as I AM, and it will continue to sustain you no matter what happens, now or in the future."
• "Lord I Need You" - I sang this through tears, with all my heart
• "It is Well With My Soul" - again, lots of tears, as I once again placed everything back in His capable Hands.

I was emotionally wrung out yesterday after church.  I spent the afternoon emotionally and spiritually resting (wrestling matches make you tired!).  I had another round of chemo this morning, and expressed to my medical oncologist some of my concerns, although I was clear with him that I was at peace with doing radiation.  He said he thought I needed better information from my radiation oncologist....and then I got the phone call this afternoon.  Makes me think they talked!

Although the radiation in Albuquerque sounds good on the surface, I am a bit concerned about traveling that far.  For those of you who don't live here, the trip to Santa Fe (where I was - maybe still am - supposed to have radiation) is about 45 min.; the trip to Albuquerque is 1 1/2 to 2 hours, depending on what part of Albuquerque we're talking about and traffic and weather.  We hit the time change this weekend, so it gets dark here about 5:00.  Add to that that we are in an El Nino year, and we are already seeing the effects of that here in Los Alamos.  Getting stuck in Albuquerque due to weather is a much more real scenario than getting stuck in Santa Fe due to weather.  There is also the fact that I would get back from Albuquerque quite a bit later than I would get back from Santa Fe, even if we can keep my appointment time the same as it is now.  That will make getting my grading and planning done during the week more difficult.  So - this is not a small decision.  If I were to put it in speech/debate terms, there is a cost-benefit analysis that needs to happen, and it needs to happen quickly.

My radiation oncologist was going to try and get in touch with the Albuquerque docs this afternoon and hoped to give me some kind of direction tomorrow.  I'll be in class tomorrow, and unable to pick up my phone while class is going on.  That means I'll have to call him back during one of my breaks if he calls during class (I know my admin would totally understand if I picked up the call during class, but it wouldn't be an easy conversation to have while I have students in front of me....).

SO - please pray for wisdom for the docs - and for us.  I haven't been asked for my opinion/permission on much of anything up to this point, and now that I am being asked, it's a tough call to make.  There are lots of things to weigh, and while I want what is best for my health, the stress of traveling daily to Albuquerque, particularly if we have weather like we're expecting, may offset any potential benefits in getting treatment there.

Leaning on those Everlasting Arms harder than ever,
Sherri 

Radiation - dates and other information at long last!

So, this past Wednesday, I went in for my "radiation simulation."  I was told that it would be exactly the same as when we do radiation "for real," but without the radiation.  They said it would be just x-rays, which would be used to measure my insides as they prepped exactly how to give me the radiation, and that they would give me my "tattoos."  So here's what all that looked like:

• You lay on a table to have a CT scan.  Your hands are above your head, and they have to stay that way while you go through the machine.  They have poles for your hands to grab, which the technician said was "to give your hands something to do" while you're going through the machine and to help keep you still.  
• When I went in for the appointment, I wasn't sure whether they were going to do my neck or not, but it appears they will be hitting my neck also (that "inconclusive" PET scan bites again).  Since they are planning to hit my neck as well as my affected side, I had to turn my head to the side to expose the neck (that was an awkward way to lay).  
• Before they put you in the machine, they make marks on you with a Sharpie; these are your "non-permanent" tattoos to help them get you onto the table and into the machine in exactly the same way next time.  Since my radiation is for breast cancer, I was given marks on my chest and sides.  When I went back to get dressed after the CT scan, I thought I looked like Frankenstein's monster since the marks are a series of green and purple lines and crosses. 
• After they are completely satisfied with how you are laying, they send you through.  It took less than a minute to actually ride the table through the machine.  The technician told me that the time to get you set up takes longer than the actual scan or the actual radiation, so I guess this was prep for that :).  
• When they finish the scan, they re-mark you to make the marks just a bit darker, then put clear plastic tape over the marks, and instruct you "not to scrub them hard" when you bathe but to "let the water flow over them" so that the marks remain until next week, when you'll get your real, permanent tattoos.  The tattoos are, I am told, small round dots that help them to make sure you are lined up the same every time.  They used the words "needles" and "ink," and the phrase "under the skin" to describe what they do, and they do use the word "tattoos."  Since they are under the skin, with ink, I don't know why they'd call them anything else :)  They say I'll get five of those when I go in next week.
• The technician next took me through the procedure for my daily visits.  When I arrive at "radiation headquarters," I sign in at the front desk, then go through to the radiation patients' waiting room.  My driver waits in the big waiting room where I signed in.  The waiting room I go to is behind a locked door, and she gave me the door code to get in.  I am to put in the code, then go through to the waiting room where I use the dressing room to change into my robe and wait my turn.  After I'm done, I'll return to that waiting room to change again and then head back out to the big waiting room where I'll pick up my driver and can head home.  
• They tell me the entire process in the office with take about 30 minutes, except on Tuesdays, when I'll meet with my radiation oncologist.  He meets with all his patients on Tuesdays to check in and see how they are doing.  So they tell me the Tuesday appts. will be a bit longer than 30 minutes.

They also gave me my start date: next Wednesday, although, the real radiation will begin on Thursday.  They said that Wednesday they will only do x-rays, which will be a last check to be sure everything is measured correctly and lined up right.  So all the "fun" begins on Thursday next week.

I have the following dates on my Care Calendar as dates I'd appreciate help with transportation, since so many of you have asked to drive.  Steve wants to take me to some appointments, which is why there are some gaps in the schedule; they also told me they will be closed on Thanksgiving and Black Friday, so I won't have treatments those two days.  Here are the dates I have open for help:

Oct. 30
Nov. 2-5
Nov. 9-10, 12-13
Nov. 16-19
Nov. 23-25
Nov. 30-Dec. 3
Dec. 7-11
Dec. 14-15

My appointment is at 3:15 each day, so I'll need to leave Los Alamos by 2:15.  I am leaving LAMS no later than 1:30, so I'll have time to go home and change and be ready to be picked up.   If you would like to help with driving, visit http://carecalendar.org/logon/209524 and enter the following information in the appropriate spaces, then sign up for a slot:

    Calendar ID   :   209524
    Security code :   9616

They have said that if the weather gets bad (which it could - the fog was awful when Steve and I went down this past Wednesday, but it cleared up once we left the hill), they don't want me to feel I have to be there - they want me to be safe.  So if the roads are unsafe, I am to stay home and call them to let them know.  They said they'll tack a day onto the end if this happens.  They may also have machine breakdowns ("They don't happen often," they told me), which could also mean I am not to come.  They said they would call me if that happened so I can decide if I still want to come later (if they can get me in) or not.  They have two machines, but if one breaks, it will put things behind.  They do their last radiation appointment at 4:30, so there won't be a very big window to get me in if there is a problem; on the other hand, there won't be many scheduled at that time of day to try to get in if there is a problem :)

I was given another large packet to read.  I am hoping it will give me enough information to relieve some of my fears - I confess that this one is still scaring me more than the rest, maybe because I knew more about chemo and surgery before I got cancer than I knew about radiation.  What scares me?  The thought of getting a really bad sunburn for one thing.  I've had plenty of those in my life - the worst one gave me a third degree burn.  It took me years to accept the fact that I was never going to tan, but once I did, I didn't want to ever burn again.  And now, I'm being asked to go in to intentionally put myself in a position to potentially get a burn. 

Another thing that scares me is what the long term effects will be.  The packet is supposed to address some of these, so I am hoping I'll feel calmer once I've read it. 

The last thing that scares me is how I'll juggle everything.  When I started putting together the logistics of this, I realized that I'd get home between 4:30 and 5:00 if I'm lucky.  Then I have to do my planning/grading for the evening.  This fear is really no different than the one I had when I started chemo, but it's the fact that in my own head I was done with the "hard" stuff...and this is turning out to be harder than I expected (although, some might say I'm borrowing trouble since it may not be nearly as bad as I am now anticipating - and they might be right....). 

The last thing is not a fear but a feeling.  I hate, and I do mean hate, having to miss more school.  My 8th period class won't see me for the rest of the semester (I might be back for the last two days, if we don't have to tack days on the end, but otherwise, I'm not going to see them again this semester).  I am having to forgo at least two speech/debate tournaments because of radiation, which hurts more than I can say.  I have such a passion for the activity and my Hawktalkers that missing out is extremely hard to accept.  When we sat down with the calendar this past week to map out dates, I cried when I found out how much I was going to have to give up with these guys. 

I am SO done with cancer and treatments!  It's making me impatient and fretful.  I know this is the final lap, and someone recently reminded me of the exhortation in Hebrews 12:1-3: "Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.  For consider Him who has endured such hostility by sinners against Himself, so that you will not grow weary and lose heart."  This was right on the mark - my fear and worry are sins since they are entangling and encumbering me from living in peace.  My devotion this morning was on one of my favorite verses, Psalm 56:3: "When I am afraid, I will put my trust in You."  The combination of these two ideas so close together says, "Get out of the Pity Pit, Sherri!"  And part of me wants to do that - to stand again on my Rock....but another part of me is tired and done and wants to wallow in the Pit for a bit - which is also not living like one who has the Rock as her foundation.  So how do I do this?  It's a choice.

I can choose to wallow in the Pit, dwelling with Fear and Worry, allowing them to whisper "sweet nothings" in my ears, but that fills my heart with - nothings.  It creates emptiness and anxiety, and puts me on a cycle that reminds me of the hamster on the wheel. 

I can also choose to follow the exhortation in Hebrews and Psalms: put my trust in Christ, my Rock and Sustainer, laying aside the encumbrances known as fear and worry, running with endurance this last part of the race known as cancer.  One commentator put it this way: "let us run, not waiting for a pleasanter, easier course, but accepting that which is appointed and recognizing the difficulties as constituent parts of the race."  But to do that I'll have to re-fix my focus on Christ, not Fear and Worry; I'll have to trust Him with all that scares me and makes me anxious.  Interestingly, the writer of Hebrews seems to know that when I don't keep my eyes fixed on Christ I am going to grow weary and lose heart - exactly what I've been feeling lately.

That word "endurance" is the real kicker.  In the original Greek, it's "hupomone," a word often translated "patience" in English.  It literally means to "remain under" and refers to situations and circumstances in life - being patient under the burden of things we find trying.  Sounds way too familiar.

I know from when Nate ran cross-country that the end of the race was the hardest - he was physically tired and the temptation to quit was strong.  But you couldn't get the prize or even claim to have finished if you gave up before the end.  That kind of running required endurance, and in the end, it paid off.

So I am choosing to endure, to remain under the burden of this last part of the race, to not give up, to not lose heart, to keep my eyes fixed on Christ.  His burden was so much heavier than mine, and I am sure He more than anyone understands how hard the race can be at the end.  I will rely on His strength to see me through until I have finished radiation.  And I will continue to be thankful for you, my great cloud of witnesses.  Your encouragement and cheering from the stands is part of what keeps me running for the prize.  I look forward to the day we can all cheer because it's all behind me.  Thank you for your faithfulness in staying in the stands to the end.

Tired, but still running,
Sherri




 

Radiation - two steps forward, one step back

So, as most of you know, I had my "pre-radiation" appointment Sept. 23, about a week and a half ago.  I was disappointed that we didn't set dates for radiation at that meeting - it was more for the purpose, I found when I got there, to meet the radiology oncologist, hear what he needed me to know, and allow me to ask questions.  Some of the things he told me were:

• They will avoid my lungs and ribs as much as possible, but will likely not be able to avoid them altogether.  That means there will be a scar on my lungs from the radiation, and my ribs will be more brittle in that area.  These will be long-term effects because the radiation will shrink the blood vessels in that area, so the bones will not be able to recuperate completely.
• Because my tumor started out at 5 cm, they will be giving me 6 1/2 weeks of radiation.  5 cm is apparently the threshold they use for determining lots of things, and when you start with a tumor that large, the current medical wisdom is more radiation, not less, even if the cancer "appears to be gone" from your body.  They worry that with a tumor that large, microscopic cells may have been missed in areas not touched by the surgery (such as the lymph nodes below my breastbone and in my neck, even though they showed up clean on the most recent PET scan).  The doc did say he will be looking at that most recent PET scan before deciding how broadly to do the radiation, particularly since the biopsy of the lymph nodes in my neck so many months ago came back inconclusive (that darn biopsy is sure causing a lot of worry on the part of the docs).  He seems as amazed as anyone else that a tumor that large is completely gone - I get the feeling this doesn't happen very often.  He is unwilling to believe that the cancer cells are completely gone.  I am praying his disbelief isn't causing him to do more radiation than is truly necessary, so I am trusting God with this one, praying that He will touch the heart of the doc if the breadth or depth of the radiation is more than is really needed.
• We could start the radiation either early Oct. or late Oct., but there were two reasons we decided to start in late Oct.: 1) the doc was leaving for vacation and wouldn't be here for the first three weeks of radiation if I started early in Oct. and 2) my left arm was still pretty stiff from the surgery when we saw him, and he wants me to be as limber as possible before we do the radiation.  He told me that I will have to stay in one position for about 2 min. (that's as long as it takes in the machine, he says), but I will have to lay with my arms above my head holding onto a bar of some kind.  My arm has limbered up quite a bit since I went to see him a week and a half ago, but the tendon under my arm is still somewhat tight, and there is still some pain associated with that that sometimes runs down that arm and into my wrist and/or hand.  He made a referral to a physical therapist and lymph-edema specialist so that I can have my arm checked out and to make sure I don't do things that could make it worse.  I have my next chemo round tomorrow (Monday), so I'll be asking the medical oncologist about this since neither the PT nor the lymph-edema specialist have called (and they were supposed to - the referral wasn't for me to call them).  And if you don't know what lymph-edema is - I wouldn't have if I hadn't gone through this - it's swelling caused by too much lymph, the fluid produced by the lymph nodes.  It is a possible side-effect of the removal of lymph nodes (I had only one removed, so my risk factor is pretty low for lymph-edema) and radiation.  If not properly cared for, it can cause lots of issues down the road.  The radiation doc didn't seem too worried by the tight tendon, and said I had more range of motion than he would have expected, but he was a bit concerned about the amount of swelling still existing under my arm - thus the referrals.
• The appointment when we DO set the dates for radiation is set for October 21.  They call this a "planning appointment" (the one I had in Sept. was apparently a "pre-planning" appointment).  At this appointment, they will put "tattoos" on me so that they line me up in the exact same place every time I go in.  They will take lots of x-rays to use in strategizing and making measurements, partly to make sure they do avoid my lungs and ribs as much as possible, and partly to ensure that they completely avoid my heart - they made it clear they don't want to hit that at all.  They told me that it will be about a week after this appointment that I begin my radiation, so that means either sometime the last week of October or the first week of November.   Once I have dates, they will go up on the Care Calendar.

I will say that this appointment, for whatever reason, was the scariest for me since that first appointment way back in April when they did the first biopsy and told me that from what they could see on the machine, the tumor looked malignant.  Then, I was afraid that the cancer wouldn't be survivable; now, I'm afraid of the long-term effects of the cure for the cancer.  I've heard some jokingly say that if the cancer doesn't kill you, the treatment might.  I'm coming to understand what they mean all too well. 

I think that at some point in all of this I heard that my life would never be the same because of the cancer, and part of me understood and believed that: never again can I mark "no" beside those "Have you ever had...." questions at the doctor's office; never again can I claim to have a completely clean bill of health; never again will I be able to take my health for granted, because there are things I have to think about now that I never would have had to think about before.  Part of this I understood.  But part of it I didn't, and hearing that the scarring on my lung could possibly cause me to need oxygen later in life, that being in a car accident at any point down the road could cause me to have broken ribs (not that that wasn't a possibility even without cancer), that I will have tattoos (and not the pretty kind that you get to choose) on my skin as more permanent reminders of all of this (as if I don't already have enough scars to remind me) was about more than I could handle when we left the doctor's office a week and a half ago.  I fought tears all the way home, and still fight them now sometimes when I think about this too hard.

I think there are many reasons for this.  First, I thought I'd put the scary stuff behind me.  Everyone I talked to said that chemo was the worst part of cancer - and even though the recovery from surgery wasn't my idea of fun, it was certainly waaaaay easier than chemo.  So facing radiation seemed like a piece of cake before I met with the doc.  Second, I think that having gotten such a great report from the surgery made me a bit too hopeful that they would cut the number of weeks I'd be required to do radiation (they initially told me 5 weeks), so to hear that I'd be doing even more than what I'd first been told was tough.  Last, I'd heard from so many people that "radiation is nothing" that I didn't really consider that there might be side effects beyond the burnt skin.  It was beyond hard to hear that now I'll need to be aware of how I breath every time I climb a flight of stairs. 

I'll admit to a bit of Scarlett O'Hara syndrome with this - the "I'll think about that tomorrow" mindset.  Avoidance is a strategy that can come in handy at times.  But I can't avoid looking this in the eye forever, and every time I do, it stares back with a mean eye that has me shaking in my boots. 

Yet I know that "God has not given us a spirit of fear, but of power and love and discipline." (2 Timothy 1:7)  Think about the juxtaposition of those ideas: fear, power, love, discipline.  What that says to me is that the tools to fight fear are power, love, and discipline.  As I rely on God's power in this part of the journey, He will remind me of His faithful love.  When I discipline my mind to remain steadfast on Him and His power and love, He will keep me in perfect peace, because that steadfastness demonstrates my trust in Him (Isaiah 26:3).

So the conclusion I've had to come to is this: my life has never been my own.  I gave it away to my Savior years ago.  He is in charge for how ever many days He chooses to leave me here on this earth.  The cancer hasn't changed that - it's just made me count my days more carefully and recognize their brevity: "So the Lord has compassion on those who fear Him.  For He Himself knows our frame; He is mindful that we are but dust.  As for man, his days are like grass; as a flower of the field, so he flourishes.  When the wind has passed over it, it is no more, and its place acknowledges it no longer.  But the lovingkindness of the Lord is from everlasting to everlasting on those who fear Him, and His righteousness to children's children, to those who keep His covenant and remember His precepts to do them." (Psalm 103:14-18).  My job is not to live in fear of cancer or its side effects, but in fear of the Lord.  He knows "when I sit down and when I rise up; [He] scrutinize[s] my path and my lying down, [He is] intimately acquainted with all my ways....[and He has] enclosed me behind and before, and laid [His] hand upon me.... If I say, 'Surely the darkness will overwhelm me, and the light around me will be night,' even the darkness is not dark to [Him], and the night is as bright as the day....  In [His] book were all written the days that were ordained for me, when as yet there was not one of them." (Psalm 139:2, 3, 5, 11, 12, 16).  He knew, long before I did, that cancer would strike in April of 2015; He knew how dark I would find the path at times.  Yet He prepared me for this trial long before He took me down this path.  And no matter how dark or long it has been, He has never left me.  I know that just as He has had the results of the first biopsy, and the 2nd biopsy, and the chemo, and the surgery in His hands, He has the radiation and its results, short and long-term, in His hands.  His faithfulness is everlasting; blessed be the name of the Lord: "The name of the Lord is a strong tower; the righteous runs into it and is safe." 

Running into the safe, strong tower of His name, where fear and darkness have no place,
Sherri