Quick update - email from doctor

This morning I had a very weak, fainty spell.  BP was really low, so knew I needed fluids.  I had to go in for lab work anyway, so when I called the infusion center, they said, “Come on in.” I had a long talk with my nurse about the physical and emotional side effects I was experiencing.  She called Dr. Page, and he said that when I come in for chemo tomorrow, he will reduce the Taxatere by 25%.  He also recommended something for the mental part.  I said I would think about it.  I hate the thought of that kind of medication, but he said it would be low dose.  This is the 2^nddoctor (actually 3^rdnow) that has recommended this, so perhaps I should listen to them.  I’ll have him order it when I go in in the morning.  Frankly, at this stage of my cancer, dependence on some medication should probably be my least concern.

I did finally get an email this evening from Dr. Powers.  It is not encouraging. 

“It seems like you are really struggling physically and mentally, Sheryl.

[He then talks about the antidepressant.] 

I like the thought of reducing the dose of taxotere. But this chemo regimen gets harder and harder the more you get. Even if scans show improvement, it is unlikely that you will want to continue much more of this.

We can see you in a couple weeks with scans. I want you to really consider the best case/worse case scenarios and what that would mean to you. Even if best case, I am worried about your tolerance of further systemic therapy (without causing even further deterioration of your quality of life).

Peace and well wishes,

Ben”

Very sobering email.  I have a lot of thinking and praying to do.

On a little light note…Mark came back for a few days.  He made homemade lasagna.  I think he missed his calling.  He should have been a chef – I think at one time in high school, he may have considered it.

Today is the day to start my steroids in preparation for chemo tomorrow, so I’m feeling a little better.  Rash on hands is not as painful and started peeling – also underarms.  Eyes still watery, but itching has stopped (Praise the Lord!)  Face and eyelids remain extremely dry and peeling.  Not much itching, though.  “Under-carriage” still tender.  

One thing I can look forward to is Friday, Saturday, and probably Sunday with the steroids on board.  After that time for the next week and a half, only God will be able to get me through it. I truly am in His hands.  I know that He has my days numbered.  I know that I trust him explicitly.  I know that He is in charge of this plan.  I know that He is in control – not the doctors. I know He will not desert me.

Ways you can pray specifically for me:

Wisdom - That I’ll know when God says it is enough - come on home.

His ever-abiding Peace

His ever-abiding Presence

Calmness

Comfort

That the chemo works on the cancer, but does not destroy me in the process

Guy and my family

And as always….I’m in His hands…….

PS  Here is the amazing thing…….I hear God speak to me.  The voice is not audible, but I definitely hear Him, when I speak to Him.  Short, but assuring answers – “It’s OK”  “I’m right here.” “Not yet.” 

Rough days......

I hardly know where to start.  Last week was a disaster.  The 1^st3 days I thought I might die and was afraid I wouldn’t.  Guy finally took me to McPherson ER Wednesday evening.  An angel of a doctor, the sweetest, most compassionate and knowledgeable lady literally saved my life – physically and emotionally.  She taught me so much, gave me encouragement and pep talks and medication to apply to my painful areas.  I’m pretty sure I would have given up if it had not been for her. She gave me my hope back. Thursday and Friday were a bit better.  Mark came for a visit, and that helped so much.  Also, the ER doctor told me not to be afraid to take that sleeping pill that that had been ordered for me, so I did, and I began to FINALLY get some very much needed sleep.  I’m sure that helped a lot.  

Thursday evening, I had this major coughing spell – have not been coughing. It scared to death.  I couldn’t get my breath.  I thought I was going to have to go back to the ER.  I guess I just had a panic attack – never had one of those before, either.  I finally pulled myself out of it by just doing some slow deep breathing.  Whew!

By Sunday I woke up feeling like I could go to church and SS.  I didn’t feel like I could play, but decided I would try.  My hands are very broken out, and my finger tips are very tender – can’t button or open anything. I keep them slathered in Vitamin E oil and aloe.  The redness has faded a bit, but still very painful. Nails look terrible – will probably lose some on my left hand.

 This was a week ago - more white showing now.

I got lab work done on Thursday and my counts were down again, so had to start the granix shots daily for 5 days.  With the histamine from those, the allergy symptoms began.  The biggest issue I’m dealing with right now is my eyes. The skin all around them and the eyelids are very dry, skin drawing and wrinkling, and peeling all around.  (have to scroll below for picture) With that, is watering and itching. Miserable!  The underarm rash is now tolerable, and somewhat easier sitting. I don’t know how much of these side effects is due to the chemo or the granix shots.  

I’m not sure the chemo is keeping up with the cancer anymore.  It seems that my forehead is darkening back to more purple, even though I’ve lost about 3 scabs.  I sent Dr. Powers my Sunday evening pictures telling him I wasn’t sure I could do another chemo round if the side effects continue to be cumulative. I have not heard from him.  I suspect he doesn’t know what to tell me. It makes me wonder if this is the last trick in his bag, and he has nothing else to offer me.  Since I am scheduled to have one more round of chemo before I see him, and one more round is not going to clear the cancer, it may be the beginning of the end.  The scan of my chest when I see him will probably tell a lot.

I read an article about essential oils (frankincense, in particular) and cancer. Many examples were given of people who were completely cured by its use.  I have lot of oils, so I figured it couldn’t hurt.  I’ve picked out three areas on my face and head and have been applying frankincense 3 times a day for about 3 days.  I sent Dr. Powers the link to that article and asked what he thought. Still haven’t heard from him.  I won’t go into the details as to how frank works, but there is physiological evidence.  Physiological evidence always perks up my ears, because I can understand that.  I figured I have nothing to lose.  I don’t believe it can hurt anything.  It at least makes me feel like I am actively doing something, because I just don’t feel like this chemo is doing the trick – the cure is worse than the disease right now. 

Well, enough whining for now.  There have been some really God-sent good times.  As I said, I was able to go to church.  Also, Christmas Eve was one of the best times I’ve had in a very long time.  Mark and Amy were here.  Mark spent much of the day cooking.  He cooked big pot of potato soup to take to Amy’s parents for Christmas day.  For us, he grilled bacon-wrapped filets, cooked fresh green beans, made an onion and fresh mushrooms glaze/gravy for the steaks, and helped my make a peach/blueberry/pear tart.  Dorothy (lady here in town) had brought a potato/cheese/ hamburger casserole and sausage with kraut.  The children across the street brought the yummiest variety of cookies.  Burt, Guy’s 90+ year old cousin, brought fresh rolls, and cinnamon rolls, and Kay (neighbor) brought cinnamon rolls a couple days ago. We are just overwhelmed by the generosity and thoughtfulness of the people here!!!

After we ate, we opened gifts, took family pictures and all sat around and talked and reminisced until nearly midnight. We laughed and laughed. Some of the things I remembered, some I didn’t, and some I never know about!  It was just what the doctored ordered for me!!  Just can’t describe how much that meant to me.

 Annie photo-bombing 😀

Warm, fuzzy Mukluks

Another highlight of my evening was facetiming with my sister who had been invited to one of my best friends’ home in Alabama for the evening. This is the most wonderful Christian family that I’ve been acquainted with since she had her first child, Courtney, and followed her through the next 13 children.  With most of her deliveries, I was able to assign one of my students to care for her.  She always looked forward to that.  While living in Alabama, I grew so close to this family.  Tracy tells me there is not a day that goes by without one of her children asking about me.  It was so delightful to visit with some of the girls, and then Colleen sent me pictures and a video of them all singing “We Wish You a Merry Christmas” to me!  How I miss this lovely family.  Just really added to my evening. ( hope this video comes through)

Also got some lovely pictures of Jeannine and the girls and their 1^st Christmas in their new home.  Sofia in short sleeves and shorts in Dec.! 😀

Glad they were able to make some great memories.  Jeannine sent me videos of Maya (13) singing 1 soprano in her honor choir. She was singing her little heart out – never once looked down at the music in her hands.  I’ll see if I can upload it here.  She is on the front row wearing the green hat with flashing lights – can’t miss her!

Mark and Amy left Christmas morning and went to Hutch to her parents. I got up and ate my usual oatmeal, but lay down in the recliner and didn’t wake up until about 1:00.  After eating a little lunch, I went back to the recliner and slept the rest of the afternoon.  I could have gone back to sleep after supper, but I thought I better get up and move around.  I had to have my annual watch of “How the Grinch Stole Christmas.”  I slept through “The Polar Express” earlier.  I didn’t go to sleep very soon after going to bed, but did sleep until almost 10:00 this morning.  I haven’t had a lot of ambition today – eyes bothering me the most – but Guy has made a nice batch of potato soup.  We have the best recipe for this!  I better go an eat a little – not much of an appetite, but that soup generally hits the spot for me.

Here is another bonus – the stock market went up 1084 points!  The most in history!  (it will take a while to regain what it has lost in the last few weeks.)

Thursday (I guess that is tomorrow – I somehow lost a day and thought I had another one) is the next lab day that tells whether I can take the next round of chemo.  Have to make some kind of decision in the next day or two.  I trust God will give me some kind of direction.  Chemo day on Friday and the next two days are no problem – it’s the hell you have to go through for the next 1 ½ weeks.  I may ask if the dosage can be reduced.  Dr. Page mentioned that once to me.

Each night when I go to bed, I visualize myself in Jesus’s arms and focus on Him.  He tells me it’s OK – He will not leave me.

And…..as always….I’m in His hands.

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Just raw, honest thoughts

Tuesday

So many thoughts rolling around in my head today – and yesterday. Thoughts that I should probably not be thinking, much less writing, but if I don’t get them out, my brain may burst. After chemo Friday (3^rdround), I had good days, Friday, Saturday, and Sunday.  Since that time, it has been very bad.  I’m not going to sugar-coat it.  I’ve felt lousy.  Very weak, had to get fluids Monday.  It helped, but didn’t bounce back as in the past.  Very weak with low BP today as well.  It’s hard to describe how I feel.  Just very dejected and discouraged.  Each time I get chemo, some unusual VERY irritating side effect shows up – now a terribly uncomfortable raw, burning rash.  (I can’t have the nausea – for which I have medication…no…always weird stuff.) Nothing seems to help this skin rash in a very miserable area.

With my kind of cancer – it is very rare (so no really good studies for pertinent, specific medication), very aggressive, and no known cure.  Yes, I know God could just miraculously heal me, but He has not, and in all honestly, it does not appear that He is going to – here on earth.  Goodness knows, I’ve prayed my heart out over that.  And I know many of you have, too – and believe it will happen.  I do hope you are right – please keep believing.  

Wednesday

Who is the man in the Bible who people kept holding his arms in the air, and as long as they did, he kept winning the battle?  I’m simply too weak right now to do that for myself.

So, in thinking about the incurable cancer…..how long do I hold on?  Am I just putting off the inevitable?  Is the extra time worth this miserable effort? I don’t know.  I guess that is what ever terminal cancer patient eventually has to ask themselves.  These are the questions that hound my doorstep these days.  If I knew I was going through this (and the chemo IS working and showing signs of improvement all the time, but never KILLS it!), and I would be cured, and could live several more productive years with some semblance of a fair quality of life, I could stand going through this misery a little better. My brother’s words years ago keep echoing in my mind, “If heaven is so great, why do we try so hard to stay here on earth???”  I have to wonder that myself.  I’ve said so many times, even though I don’t understand it, and SURELY DO NOT LIKE IT, there has to be a purpose.  Some of the purposes that I thought would surely be involved have NOT come to pass yet, and that is VERY discouraging.  If I could see particularly 2 events happen, I could say my purpose is fulfilled, and now I can go on to heaven.  And frankly, they may not happen until I’m gone.  And that breaks my heart.  I would just love to have the peace of knowing those 2 things are done.  If the “circle” gets broken, then it would have been better that I had not even been born.  I MUST see all my family in heaven!!!!

Anyway, I have to ask myself, how long do I reasonably hold on and fight this?  I know I cannot make any decisions when I’m so down, I’m looking up at a snake’s belly. That is not the time to try to think rationally.  When I’m up, I consider living forever – however long that is.  Jeannine suggested that I keep a little journal and rate my days from 1-5.  Then look back over the numbers periodically.  When the 5s (bad days) are far outweighing the 1s, it gives a more objective picture and helps a bit more in the decision process.  

Jeannine helped me look at this perspective, too.  So many people are praying and so supportive of me, and for that I will FOREVER be grateful, because I know without a doubt I am still here as long as I am due to prayers.  So many people tell me how strong I am, how inspirational I am, what a witness I am, how this and how that.  That is a lot to live up to day in and day out.  Some days I’m none of that!  And then I feel guilty not being able to live up to people’s expectations. The hard, cold truth is I can’t live forever.  At some point, I’m going to need permission to move into my heaven mansion – or pup tent – or whatever is being prepared for me.  I don’t really care – so long as I eventually get there.  Now, don’t everyone suddenly give me permission now!  J  I’m not quite ready yet to make that decision, but at some point, it will have to come.  

You see the craziness in my life right now?  Most people (certainly me) go through life not thinking about when they are going to die – it will happen someday – just don’t want to think about it now – have too much living to do.  That’s natural.  Something would be wrong with the average person if they focused all the time on death and how they might die.  I certainly lived all my life that way – focusing on life, and living of my Savior. But when you are put into a position where you have a terminal disease, you are forced to think about death and how you are going to die.  And I’m not obsessing about it either.  I’m not necessarily afraidof dying.  I know with hospice, you are made as comfortable as can be, and I do know that, for me, to absent from the body is to be with the Lord.  I just don’t want to go yet!!!!  And I don’t like this suffering along the way.  A lot of people suffer more than I do – I’m no poster child for suffering.  I look a some of those people in the infusion chairs when I get my chemo and think – well, at least I’m not dealing with that!  Certainly, there are Christians around the world that are dying for their faith.  Christ suffered an agonizing death for ME!  So that I could have eternal life with him forever and forever.  My suffering certainly pales in light of that! 

But when you are in the depths of hurting – physically and/or mentally, it seems as if the whole world is sitting on your shoulders.  And you just want it to all go away.

I know if I pour this all out to Dr. Powers when I go to see him, he will just say that perhaps it is hospice time.  He is a very compassionate man, and I just love him, but I realize he is a very practical man, too, dealing with cancer patients all the time.  He can’t save them all.  So far, he has always had “another treatment” to suggest for me.  I guess when he runs out of options, perhaps that will be my sign.  

At this point, at least, I do not believe that God has turned lose of me. Don’t think I haven’t questioned Him…..I guess until that time, I’ll just try to do my best to remain in this “terribly rocking boat” right now.

And as always……I’m in His hands…..(please don’t let go of me!!!!)

Riding the roller coaster

I need to catch up, but this will be short.  My fingertips are very tender.  This causes me great concern.  How bad will this get?  Will it be permanent like it is in my feet?  My feet are just numb, so thankfully walking, with the proper shoes and inserts does not cause all that much pain.  There is no way to play my keyboard this way.  It hurts to put any pressure on my nails.  What is weird is that the pain didn’t start until about a week after the 2^ndround of chemo.  The first round just caused a little numbness – even though I used ice during the infusion.  Well, there just isn’t anything I can do about it but ride it out.  It even hurts to press the keys on the TV remote. 😞

Actually, last week was pretty good to me.  I had to take those 5 shots to build my WBC.  Took the last one today (until the chemo on Friday drops my counts again).  I’ve learned to manage the flu-like SE by taking Tylenol on a schedule.  One of the SE that has shown up is terrible drying and wrinkling my face and neck.  A peeling rash is occurring, and the area is very itchy.  I’ve found that using emu oil is mostly relieving the itching.

The other – and probably biggest issue right now – is that both underarms are very swollen, red, ITCHY, and painful.  I have a powerful steroid cream that was given to me during another chemo time that broke my arms out to the point of scabbing.  Dr. Powers said to try that, and if it didn’t work, it may be a fungus issue which often happens.  I’ll give it a couple days then I’ll switch to the Lamisil if there is no improvement.

My “undercarriage” (as my daughter calls it) is better.  The doctor called in a prescription for a strong steroid cream.  That has really helped – hasn’t removed the issue, but greatly improved. Thank you, Jesus!!!

Another big issue is sleep deprivation.  Didn’t sleep at all last night, so pretty dragging today – plus running a low-grade fever (from the shots) – just enough to make me feel lousy today.  The nurse said the doctor could order a low-dose of Ativan.  I’m just so reluctant to take sleeping pills – not sure why.  I take a Benadryl when I go to bed – to help with the histamine from the stimulated bone marrow.

I did go to SS and church Sunday – wearing a mask.  I did enjoy getting back among my support group and worshiping.  The pastor’s message was just for me – all about HOPE.  I did OK, but wore me out.  

I did get a project finished in the basement with my sewing machine a couple days ago.  Just had to bust it out!

Mark and Amy came for a visit this weekend.  Mark went hunting with a couple of his high school friends.  It was so nice to spend time with them.  I don’t think people really realize how much it means just to come and visit a bit.

I am halfway through this round of chemo treatments – at least until I go back to KC.  It may continue after that.  What I can tell you is that it is working.  It’s slowly, but it is working.  I had this big purple blister at the outer corner of my left eye.  It has been drying.  The other night it bled out, and yesterday, the purple scab came off. My forehead is flaking big-time – a good thing.  There are still 5 scabs yet to come off there.

Today, after I got my shot in McPherson, we stopped at Wendy’s for lunch.  This lady (from a group of other ladies) came over to me and asked if we would like some candy from her sack (peppermints).  She asked in a very concerned voice if I was OK.  I told her yes – I just have cancer on my head.  I had one of my crocheted hats on.  She asked for my name so she could pray for me.  Wow!

I put the most recent pictures at the end.

Things I’m thankful for:

The Christmas spirit – songs, decorations

The Reason for the season

The sun shone today.

My rib has not hurt for weeks.

We didn’t get the big snow that North and South Carolina got.

My favorite nativity set Jeannine gave me several years ago.

My furbaby.

My warm home.

Haven’t contracted an infection during these low blood count times. Thank you, Jesus!!

My ladies’ Bible study group who brought us two huge plates of food from the annual Christmas lunch that I could not attend.

My husband who continues to do the cooking, cleaning, and driving where I need to go.

And as always…..I remain in His hands….

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Eye is less black.  Big blistery scab at outer corner of my eye gone. 

Cheek lighter and scaling.

Rash on my neck.

Rash on my cheeks and under eyes.  But face is more symmetrical now.

Rash under left arm.