Sunday, February 26, 2017

My week off chemo……

Overall, I’d have to say that this has been a pretty good week.  It’s been a “draggy” week, but for the most part, I’ve felt pretty good.  It started out a bit rocky.  Last Sunday, I got up, got ready for church, and went to Sunday school.  During church, I just had a hard time focusing and was very sleepy.  I just figured it was the side effects of the gabapentin, because I’ve increased it to twice a day, and I know the SE is drowsiness.  I couldn’t wait until lunch was over and I could get to my recliner to take a nap!  I slept for over 1 ½ hours.  When I got up from my nap, rather than feeling refreshed, I felt really weak and a bit fainty once.  I was sure glad that Monday was a day to get IV fluids.  I’ve pretty much learned when I need them now.  I’ve found out that taking chemotherapy is a lot more than just taking the drug.  Fluids are super important and so is the lab work that you get weekly before your chemo.  And it is pretty amazing how those labs can fluctuate.  It would be nice if on your week off, it really was a “week off.”  However, when you need the fluids, you really . need . the . fluids!l  After getting them Monday morning, I felt so much better.  We went to eat at the Olive Garden.

Tuesday, we did’t have to drive to Hutch!!!!  Woo hoo!  So we went to Lyons to get tags for Guy pickup.  I didn’t really feel like driving my car so we could get tags for it, so we just did Guy’s.  Having come from out of state, we had to have the vehicle inspected at the police station - $20 – cash!  All he did was check the VIN to be sure it wasn’t stolen.  Then we went to the court house to the treasurer’s office.  You are supposed to get your tags within 90 days after moving here.  Well, who’s going to know when you moved???  It had certainly been more than 90 days, but we had already paid for all the days until March (when our tags are due) in Alabama.  If we got Kansas tags before March, Alabama was certainly not going to give us a refund!  And then we would be paying double taxes!  So we put it off until now.  I’m not going to do mine until near the end of March, because I’m not going to pay any more than I just have to pay.  The Kansas taxes are so much higher than Alabama taxes anyway.  ARGH!   Thankfully, we are not driving new vehicles – no more new vehicles for us!

Tuesday night we attended a Bible study that is being taught by our pastor.  There was quite a large group in attendance.  They are studying the book by Richard Foster, Celebration of Discipline.   That is a quite old book that I read many years ago, but I guess this is an updated version.  I couldn’t begin to find the old one, so I had to go to good ole Amazon.  Us and the UPS guy are getting well acquainted.  And I just love it when I go to the post office and in my mail box, I find a KEY with a number on it!!  That means that there is a package that was too big to fit in the little box.  So I take that key and go to the “big boxes” and insert it in the box with the number that matches my key.  The other day, I got the mail, and as I started to leave, the post mistress said, “Oh, Sheryl, you have a package here that I hadn’t got put up yet!!”  And she handed me my package.  Some days, it is just like Christmas!!

Wednesday was ladies Bible study.  I always look forward to that so much each week.  What a wonder group of ladies we have!  The oldest is the pastor’s mother-in-law, and what a delightful lady she is.  She always decorates the church for each season or holiday – a table just inside the front door, our SS table, even a little area in the ladies’ restroom.  Everywhere there is a table, she has something on it.  She is so talented and creative.  Once we get moved, she will almost be my neighbor.  She lives in one of the independent living apartments of the nursing home.  She is quite an active lady, and I just love her!  The youngest is maybe in her late 30s, early 40s.  Anyway, it is a very spiritual group of ladies, and most of them I  knew when I lived here during my growing up years.

While I was gone to the Bible study, I got my first delivery from Home Chef.  This is a home delivery of meals that are all ready to prepare.  Each meal is packaged with all the necessary ingredients along with the recipe cards.  You can choose the number of meals you would like for the week, and you can even edit what will be coming the next week, and choose from a list of other meals.  I chose the 6-meal plan.  You can cancel at any time, and you can skip a week of you want to.  The first two meals I’ve fixed from it were really good.  The first was a sirloin steak with garlic and blue cheese butter (I left the blue cheese out of mine), fresh green beans and fresh tomatoes, and fingerling potatoes baked in the oven.  It was great!  The next night it was parmesan chicken with mozzarella cheese and marinara sauce and steamed kale and spinach with fresh garlic.  That was great, too!  So far, so good.  No more, “What’s for supper?”  It figures out to be about 9.95 a meal.  You can hardly go out and eat anywhere for that amount anymore.  And this keeps you out of the grocery store where you will always buy more than you went there for.  You still have to buy soap and toilet paper, ets.  But for now, I sure like the convenience of it – and the variety – because I get stuck in “cooking ruts.”

Thursday, it was back to Hutch of an appointment with an ENT.  This appointment had been made by my primary care doctor when I had that awful sinus infection.  I didn’t figure by that time I would need anyone, but I had been blowing out bloody mucus (sorry, my non-nurse friends!!), so I thought it wouldn’t hurt to see one.  The nurse squirted an afrin/lidocaine solution in both nostrils.  She said this was because he would want to take a look in there, and that it would taste nasty.  She was right about the taste – and made my throat numb, too.  I sat there wondering what “taking a look in there” exactly meant!!  Just HOW FAR in there????  I had seen the LONG flexible tubing with a camera and light in the end, and it made me just a bit nervous as I waited for the doctor to arrive – who, by the way, could have been my grandson!  Boy, they are looking younger and younger these days!  After he heard my story and saw my scared head – which he was very interested in, because the ENT guys are the ones in Hutch who do these kinds of surgeries – he turned on the little TV screen barely inserting the camera to look in my nose.  He determined that there was nothing sinister going on – “I see nothing that would require any surgery”.  THANK YOU VERY MUCH!!!  The bloody mucus was most likely due to the cold dry air of Kansas winters.  Coming from 85%-humidity-Alabama, the Kansas winters are indeed dry.  I was to continue the saline spray I had started to use and use Ary saline gel on a Q-tip several times a day.  I has seen that in Walgreens right next to the Ary saline nasal spray, so I knew right where to go.  I picked up two, one for me and one for Guy.  Guy really likes it, too.  He says it seems to make him breathe easier.  I’m not sure why, but if he thinks it does, then that’s great.  He has more sinus issues than I do!

I could have got my other bag of fluids that day, but I didn’t feel bad, and I thought I should get them on Friday, and that way I’d for sure get through the weekend OK.  Plus, I was schedule for lab work on Friday.  So, BACK to Hutch we went on Friday.  I got my labs done and got my fluids.  I don’t remember that I got labs during my week off before, so thought that was a bit strange, but no one else thought that, so I just went along with the orders.  I guess it was a good thing I got them – many of my counts had dropped considerably.  My white count was cut in half!  It went from 7.6 last week to 3.2.  I asked the nurse about that, and she showed me this little formula – 3.2 (x10) x 33 = 1056.  The 33 was the immature white cells.  As long as the number was above 1000, it was OK.  This formula had a name – some letters I hadn’t heard of.  Maybe some of my nurse friends who learned their lab values better than I did will know what I’m talking about.  Anyway, she didn’t seem concerned about it yet.  My Hbg was 10.1 (normal 12.0-16.0) and Hct 31 (normal 36-48).  These are the lowest I’ve had so far.  I was even UP a little last week on these two, so as I looked at those, I thought, “Well, no wonder I felt draggy all week!”  Except for that one week when the Hbg went up 0.6, it has steadily been dropping.  I really hope I don’t have to take any shots for being anemic or for have too low a white count!  What was strange was my magnesium level.  It was 1.6, dropping from 2.2 last week (normal 1.8-2.4).  So they added some magnesium to my IV on Friday.  I had been taking 250 mg of magnesium orally, and she told me to double that.  I had been having some cramping in my toes at night, and had been having the 1st fingers on both hands just lock up when I wanted to bend them.  I thought that was really strange!  I don’t know if that was due to the low mag, but since they added mag in my IV, I have not experienced that.  One just never knows what weird things are going to occur next.

Probably the biggest thing bothering me right now is the neuropathy.  I definitely have that in my feet – the numbness and discomfort when walking.  I’ve tried several different combinations of essential oils, and I can’t honestly say that anything helps it.  I just PRAY that the nerve damage is not permanent!  That is my biggest fear!!  Well, other than not being cancer free…..  Next Tuesday I have an appointment with the oncologist.  I haven’t seen her for a month.  However, the nurses are in contact with her each time I’m there for fluids or chemo to tell her my latest labs, complaints, issues.  They told me that she would probably be adding another medication for the neuropathy at my next visit.  I wonder what that will be and what the side effects will be.  Most of the time, with most meds that I’ve ever taken, the SE are very minimal, but with these drugs they are having to give me at this time, the SE seem to be a big deal.  Adding another drug with more SE is not something I’m looking forward to.  BUT I don’t like or want this neuropathy either!!  I have a whole month’s worth of questions written down to ask her.

Saturday, I was getting ready to go out for breakfast to our favorite place in Lyons – Scrambled Sams.  I was feeling OK and had slept well.  All of a sudden, I had a weak spell, and just had to sit down.  I got some orange juice, and after a bit decided to go ahead and go - thought I probably needed to eat.  As the day progressed, I did get to feeling better.  It’s just frustrating – to not know from one minute to the next how you are going to feel – and it can happen in seconds.  Makes it kind of scary to drive by yourself – which I don’t do unless I just have to right now.  I do drive around town to the post office or the grocery store.

Today, Sunday, has probably been my best day this week.  I’ve felt great all day.  We had a pot luck dinner at the church, and I always enjoy those.  I especially enjoyed it today because my taste is good and has been all week.  I hate it when everything tastes bitter the days after chemo.

Tomorrow our Alabama house closes!!!  I got the contract Thursday by email.  I printed it out, we signed all the papers in front of a notary public, and overnighted them back the same day.  Now we are just waiting for the MONEY TO HIT THE BANK!!!!  Then we start on the closing here.  I hope it only takes the week our banker said it would take.  All the paper work is in here, and we are just waiting on our money.  Then we can start moving some of our things.  I can’t wait to get in there and get spread out.  This afternoon I was looking through some of my quilt things – just itching to get that room set up!!

Next week starts my 4th month of chemo.  I do hope that 4 months will do the trick.  If I have to go longer, OK, but oh, how I wish it could only be 4 months – 3 more times.  I’m so anxious to see my Kansas City doctors the last week of March!!  I want to have those CT scans and MRIs!!!!  And I PRAY PRAY PRAY they are clear!!!!!    just want this to all be over!!  I want to be healed and get on with my life!!  I know God has a purpose in all this, and I certainly do not want to step outside His will for my life, but……God……I’m really tired of this…….I just want to be healed completely……I’ll continue to serve you…..I just would prefer to do it cancer free….

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

Saturday, February 18, 2017

A much better week.....

Over all, this had been a good week – the best since that nasty sinus infection side-lined me.  Either I’m beginning to manage my medications better, or the side effects are easing a bit.  I know with some meds, you experience side effects a lot when you first start, but they lessen as you continue to take them.  I don’t know – sometimes I really feel them, and other times I don’t.  This week, the steroids didn’t seem to wig me out.  I seemed to stay more even-keeled, and that makes me and everyone around me happy!

I’ve also had more energy, although my stamina is not great at this point with the cumulative effects of the chemo fatigue.  I’ve tried to be more active while pacing myself.  I no longer feel like just sitting in my recliner all day.  It doesn’t take many of those “sitting” days to lose a lot of strength, so I’m trying to gain back that strength I lost when I had that siege of fevers.

One of the things that bugs me the most is the blurred vision.  I know that it is the chemo, but the gabapentin I’ve had to increase to twice a day to try to combat the neuropathy has blurred vision as a side effect.  A double whammy!! As a result, I get eye fatigue really bad during the day, and it makes driving a real challenge!  Add droopy eye lids that cover half my pupils, and I have to really concentrate to hold my eyes wide open to see well enough to drive.  I drive around town – to the store and the post office, but if we go anywhere, Guy does the driving. 

Friday, my car came out of the body shop – remember the deer that hit us.  So I had to drive home.  I did enjoy being out on my own for a while though.  A lot of times when we are in Hutch, I want to go to stores and do some shopping.  Guy pretty much just wants to do what we have to do and go home.  So I took the rest of the day to go where I wanted to go.  I had this one place I wanted to eat.  They serve mantias – a Mexican dish that Mom and I used to eat many years ago when we all lived in Hutch, and this place called Kikos had them.  It is kind of like chalupa, but it has this special green dressing on it and banana ring peppers and black olives.  They are just really good!  But, I was so disappointed, because it tasted bitter – just like everything else does right now.  My appetite is ravenous, but nothing tastes good.  EXCEPT Freddy’s custard!!  It always tastes good.  And CHOCOLATE still tastes good.  Actually, a lot of sweet things do taste good.  I figured with the way I’ve been eating lately that I would have gained a lot of weight, but when I weighed the other day, I had lost some.  Hmmmm….

So after eating, I headed to Walmart.  I wanted to find that Dr. Scholl machine to step on and have it analyze my feet to see what insoles would be good for me.  With this neuropathy, I need something kind of spongy for an insole.  Even though these are expensive, I was bound and determine to get me a pair.  When I got home and opened them up, I was shocked to see they were about half an insole!  Where I need the support of the softness, the insole ENDS.  I need the softness on the ball of my foot.  That’s where this insole ended!!  ARGH!  Thankfully, they are fully refundable.  I’ve been massaging in a blend of essential oils morning and night.  I guess it is helping some.  I no longer feel like I’m wearing socks when I go to bed at night.  But I can definitely tell that there is numbness when I walk during the day.  I just hope that this is not permanent and will get the feeling back when this is all over!! I’m SOOOOO thankful it has only affected my feet and not my hands at this point.  I pray that my hands escape it!!!

Anyway, by the time I finished my errands and made it home, I was sooooo exhausted.  I had never been up and going all day.  When I was about ready to go to bed, I was sitting at the table.  I took my Dexamethasone bottle and shook out these two little light green pills into my hand.  One of them jumped out of my hand and hit the floor.  We looked and looked and looked and looked for it!!  I don’t know how it got away like that.  I wouldn’t have worried so much about finding it so much if it weren’t for the chance of Annie getting it.  We took the room apart, got the dust mop out, got the flash light out, looked and looked.  We never did find it.  We figured if it was so hidden from us, surely she would not find it either.  But, after being all ready to go to bed, I got so spun up looking for it, I broke out in a cold sweat.  It took me a while to wind down so I could go to bed.

Earlier in the evening we had been to our local place to eat.  I got a small cheese burger and for some reason ordered onion rings.  I knew better.  Even though they were very crispy, I knew they were greasy.  And the burger ended up being rather greasy, too.  I told Guy, “I’ll bet I’ll be sorry later eating all this greasy food.”  Well, after I settled down from the pill-hunting episode, I took a Benadryl before going to bed.  I knew I would need it to counteract the Dexamethasone.  I had just barely dosed off to sleep, and suddenly I had a VURP!  I jumped up out of bed with this burny goopage in my throat, coughing!!!  Three soda crackers and two Tums later, I was finally able to go back to bed.  The rest of the night I slept like a log – I don’t think I moved again until 6:30.  I haven’t slept that hard in I don’t know when!!l

This afternoon, I got ambitious enough to get my sewing machine out! You know I’m feeling good when I want to sew again.  I found this really pretty placemat at Walmart that I wanted to use to make a little bag.  When I go to my Bible study, I end up with my Bible, a notebook, and the class study book.  I wanted a little bag that this would all fit in making it easier to carry and keep together.  I found some fabric on my selves that I thought would look nice for the handles.  It took longer to make the handles than the four seams of the bag.  I really like the way it turned out.  
I’m getting the itch to start quilting again, but I just can’t do it in this house with no room to spread out.  I’m busy arranging my quilting room – in my head – in the new house.  So far, that is all going well, with the closing date of the AL house on target for Feb. 27.  I figure we ought to be able to move into the house here about the 2nd week of March.  I’m hoping that time frame will work.  And I’m hoping and praying that I’ll feel good and not be too fatigued. 

I’ve started wearing my watch again.  Trying to get used to wearing it on my right arm since I can’t wear it on the left with its scar.  I just never liked this plastic band these Apple watches came with – it is just too hot and I always sweat under it.  
So I found this 3rd party stainless steel one online.  
I was afraid it would be too heavy, but it is just right!  Guy had to take several links out, but it fits perfectly now, and the rose gold band just matches the rose gold watch. When these watches first came out, I thought they were the most ridiculous things to have!  But once I got one, I’ve really enjoyed having one.  The best thing I’ve like is when you are going somewhere in a city, using the maps on your phone, the watch will tap you on the wrist when it is time to turn!  I also like the calendar, because it will tell me when it’s time to take my medication.  Just a techy geek!!  😀

I’m going to enjoy having next week off from chemo.  I do go in Monday for my extra fluids.  And Thursday I have an appointment with an ear, nose and throat doctor.  My primary care physician made this appointment when I was in the midst of my sinus infection.  Although, I’m over the infection, I’m going to keep that appointment because I’m so prone to sinus infections.  The only issue I’m really having right now is a little pinkish drainage now and then that I think is just related to the dry winter air here.  The humidity is so much lower here than we are used to in Alabama.  I sure hope they don’t have to run something up into my sinuses to look around!!!!!

I got this blue light blocking screen to go over my laptop.  It is supposed to help decrease eye strain and reduce messing with your circadian rhythm when computing in the evening.  I do think it is helping.  Those glasses that I had that were supposed to do this, I sent back.  They were not strong enough power for me to use close up, and the ear piece made my flab uncomfortable.  Thanks to a techy friend’s suggestion, I went into my phone settings and set my phone to “night shift” for using in the evening, and I really like that.  I can’t just stop reading and computing, so I have to find ways to work around these eye issues.

Looking forward very much to worship tomorrow…..

And as always……I’m remain in His hands……