Catching up with the good and the not-so-good

 Once again, I’ve kind of gotten behind here. It’s not as easy to type anymore with these numb, but at the same time, tender fingers.  Some of the nails are quite sore, and the cold weather really aggravates that.  Sometimes I just have to put on gloves.  I’ve been using emu oil to keep them from getting so brittle.  Last night I reached for the light in my bathroom and ran my right little finger into something and just snapped off half of that nail.  

I’ve never lost a nail before so I didn’t know what it might look like underneath.  That part is kind of soft.

I’ve actually had a couple pretty good weeks – as far as feeling good. I certainly haven’t been up to running any races, but I did bake a pan of baked oatmeal.  I cut it into pieces, wrapped them in foil, and froze them and have been enjoying warming that in the microwave, then pouring milk and blueberries over it.  Yum!  Some days I feel like actually cooking oatmeal for breakfast (has to be the old-fashioned kind – none of that quick or packaged stuff!), but this baked is SO good and so handy and quick.

I’ve been able to keep my laundry up, although my bed really needs washing. Just hate the making it back up. Guy washed up two beds last week, and I helped him make them (exhausting!), so he’ll help me with this one – just need to get it done.  I put gloves on to keep from snagging my nails.

I got my double chemo last Friday, and so far, so good, with the side effects.  Haven’t really developed any yet, which concerns me a bit – am I getting enough of the chemo with this reduced 25% amount of the Taxotere???  A week ago last Monday, I was supposed to get fluids, but didn’t really need them after just the Gemzar.  I felt pretty good all week.  I was tired and short of breath due to the low hemoglobin, but paced myself.  My hgb had gone from 7.7 to 7.9, so I thought things were looking up.  I was eating foods high in iron – Guy was cooking me bags of fresh spinach.  And then the next lab work showed a drop to 7.2.  ARGH! The normal is 12-15, and anything below a 7 will result in a transfusion.  Dr. Page had ordered IV iron to be given, but it got hung up in insurance approval for nearly two weeks!  Here I am, out here huffing and puffing along while approval is sitting on someone’s desk in who knows where!!!  So Friday, I went through my chemo treatment just fine. 3 days of taking steroids will make you feel like you can concur the world.  I know I over-did Sunday – went to SS and church, played my keyboard (couldn’t put much pressure on the keys, but thankful for a sound system.)  We went to Lyons after church and ate Chinese food. It’s pretty greasy, but I didn’t eat much and got along OK – so far.  I go there for those little sugar-coated fried biscuits anyway! 😀

The big problem Sunday was two NFL championship playoff games, and they both went into overtime.  Of course, the KC Chiefs was the late game and both games were pretty exciting.  It was so hard for me to cheer and, at the same time, try to remain calm.  I tried my best, but when it was all over, and I went to bed, I dozed a couple hours, and then I was playing football the rest of the night – even with my sleeping pill. An over-done day and hardly any sleep, I figured I’d feel like I’d been hit by a Mack truck the next day.  But I didn’t!  I got up, ate my breakfast, and got dressed, and was ready to go to McPherson to start my 5 days of shots.  They were prepared for me to need fluids, but I could hardly believe I wasn’t crashing and burning like I do on Mondays after the double chemo.  

I was so excited that the approval for my IV iron had come through, so when we prepared to go in for my shot at 1:00, I’d get the iron, too. We decided to go eat at Applebee’s before going for the treatment.  As soon as I walked in the door, as we were waiting to be seated, I got this intense dizzy and fainting feeling. 😞 I grabbed onto Guy and made it to our table.  I ate, but felt weak and shaky the whole time.  I recognized the symptoms of needing fluids that always seem to come on so suddenly.  By the time we got to the infusion center, they evaluated me and started the 1000 ml of fluids.  That took two hours.  The iron was only 16 mins, but I had to have 250 more ml of fluid because iron tends to drop your BP.  I got my Zarxio shots started (given every day for 5 days to build up my WBC).

I tried my best to get a nap during that time because I was soooo tired, but I didn’t have any luck.  Sitting directly across from me was an elderly man who was sooo thin.  There was a young lady that was with him – I supposed it was his daughter.  She was very attentive to his needs.  I could tell he was so miserable and in pain.  I felt SO bad for him!  I just laid there and prayed for him!  🙏  He was to come back the next day for a surgical consult.  I have no idea what his problem was, but I just could hardly stand to see him so miserable.  The room was nearly full of patients, so since I couldn’t get to sleep, I just started to pray for each one. You just don’t have to look very far to see others that are so much worse off than yourself.  I just thank the Lord so much that I have so little pain!  If I do, it is related to my SE, and I get relief from them.   I see so many there that have a lot of constant pain related to their cancer.  I truly feel blessed in that manner.

Mark is here for a few days – a working vacation, I guess, because he’s on a lot of conference calls, but it is nice to have him until the end of the week. He’s helping with the cooking, and he’s a good cook!

A couple of days ago, I went downstairs and spent some time among my fabric and patterns. 

 I didn’t get any real thing accomplished, but I handled a lot of fabric and dreamed.  I’d sure love to have the strength to sew a few stitches.  Maybe as this iron takes effect, I’ll get some strength and motivation to actually do something.  I do get a 2^nddose of IV iron next week.  I can already tell that the 1^st one is helping.  I wonder if I’ll ever be able to do handwork again.  How I love to hand applique!   I wonder how much of this numbness is permanent.  I know it is permanent in my feet.  Oh, well…..I’ll just have to learn to live with however it turns out.  I’d rather be alive and not able to sew than the alternative.

The weather has been brutal here for a couple weeks.  COLD and WINDY.  We have escaped the heavy snow, but today we did have to deal with ice on our windshield as we drove to McPherson and back.  This evening, it has been snowing off and on – just supposed to get flurries. We just can’t seem to get a break in the cold and wind..  Last night, however, was one of the prettiest sunsets I have ever seen!  It looked like the sky was on fire!!  God’s handiwork is amazing!!

I’m just very grateful for the days that I’ve felt good.  Perhaps I went into this last chemo feeling a little stronger, so maybe that is why I’m tolerating it pretty well.  I keep waiting for the “shoe to drop,” but I need to just focus on one day at a time – so hard to do, especially when I know this next scan is looming the 29^th.  

Please pray this chemo is effective.  🙏🙏  I’m a bit discouraged with it right now with how it looks.  I don’t see a lot of improvement since we’ve gone to this new schedule.  I think I’m going to ask him to go back to the full dose, rather than the reduction of 25%. I think he reduced it because of the SE and how hard it was hitting my nails.  The scan will tell the tale, but it is a ways off. I try not to worry about it.

I just need to trust Him, focus on His presence, and His peace.  That always gets me through the rough spots. I so appreciate all your continued love, support and prayers!!  Could not make it without you!! 💖

And as always….I’m in His hands…..

You can scroll for latest pictures....

Still a lot of fluid in that purple area. Red area is flat and drier.

Left side of face seems swollen. Not sure what the pink stripe is - I guess a SE.

The area is not as  bulbous as it was - just a bit dryer than it was.

 Nothing on the right side of my face, thankfully.

Catching up and Dr.'s Appt

Since the last blog, things have eased a bit for me.  The 25% reduction in the strong chemo helped to ease the side effects from the last time.  It certainly did not eliminate them, but made them more tolerable.  The biggest issue is the low hgb I have right now (7.7 - half of what it should be), which is causing so much weakness and shortness of breath with very little exertion.  

I had an appointment with Dr. Page today.  It was a very encouraging visit.  He said he could see improvement from the last time.  I see him once a month.  I see it every day, so it is hard for me to see much progress and becomes discouraging.  Dr. Page addressed a lot of my questions. He felt it was the gabapentin (given for the neuropathy) that was causing a lot of my issues – particularly the wobbly, unsteadiness.  He thinks that will even out as time goes along.  One of the very positive things is that he is going to give me IV iron to help raise my hemoglobin enough that I can take the shots – Procrit.  That is very encouraging to me.  I think that will give me a lot more energy and help with the wobbliness.  He is going to just schedule fluids for me weekly since I’ve been having to go in for them anyway.  I’m so impressed with this doctor and his helping me with so many of my issues.  I told him that 2 weeks ago Dr. Powers said he would set up a scan in a couple of weeks, and I had not heard from him, even though I have asked him in many emails.  Dr. Page said, “Oh I can do that right here if you like.”  I said, “But you don’t have anything to compare it to.” He said he would just send for the disk from KC, and he would have it here for the comparison.  He said he would be happy to do that.  I looked at Guy and said, “Well, that would be so much easier than having to travel to KC.”  Dr. Page said they would do the scan right there in the McPherson hospital.  He turned to his computer and said he would put in the order right now.  I told him I was really concerned about the next scan because it would probably be a turning point for me.  If there was considerable deterioration, there probably would be no point in continuing with all this.  He still felt if it was working on the outside, it should be working on the inside. With him going to give me this iron and do the scan right here, I felt immediately encouraged.  Dr. Page just always seems to have a positive outlook with me and that raises my spirits.  I never feel like he is giving up on me.  He always feels like there is help to be had.  I haven’t had that feeling from Dr. Powers the last several times. And it is so handy here.  Anytime I’ve been in the infusion center and had a problem, the nurse will contact Dr. Page, and I get immediate help from him. I just have a lot of confidence in this doctor, and I feel the Lord has directed me to him.  I feel very comfortable with him.  

So, this evening, I don’t feel my case is hopeless right now.  I still know that this is not curable, but if I can have a few more weeks, months, years of life with some measure of quality, that is all I ask for.  I still pray for a miracle; I still pray for His healing, but I’m still in the center of His will and will continue to trust His plan and give Him thanks and glory for all I have.  God apparently is not finished with me yet.  And so I continue…..

I’m really missing not being able to participate in so many things because of no energy – Sunday school, church, ladies Bible study, senior luncheons.  I’m hoping that when my hgb comes back up and with the new spread out chemo regimen, I’ll gain some energy and be able to enjoy life a little more.

I’m concerned about my nails.  They are looking really bad.  

The doctor said I may lose some of them.  That is a side effect of the Taxotere.  That is one mean chemo.  I just hope they grow back.  My finger tips are very tender, ache, and yet numb, and I really have to protect them.  I can’t open anything or put any kind of pressure on them. I can type by using the pads of my fingers.

Another effect of the Taxotere is that my vision has decreased considerably – sometimes have to get out my big magnifying glass that came from Guy’s mom.  

I remember her using it a lot.  And it causes my eyes to water a lot which adds to the difficulty in reading.  Dr. Page said that would improve if I got off Taxotere, so I’m not holding my breath on that one.  I can still read so should be grateful for that.  Sometimes it’s just easier than others.

I was so happy to celebrate my 73^rdbirthday.  I actually never thought I would.  Jeannine sent me the most beautiful pink roses – perfect in every way.  

Guy gave me a beautiful bouquet of flowers.  

I told him not to get me anything, but he said, “That is not in my DNA!”  Mark called and he and Amy sang Happy Birthday to me!  We all laughed over that.  My cousin, Cynthia Tobias Tally, sent my Sheri’s Berries. 

And I got tons of wonderful cards from so many – thanks to all of you!!!!

Well, I’m looking forward to being able to be home tomorrow – all day. Thursday I’ll get labs and Friday the Gemzar by itself.  Will be interesting to see if there are any side effects from it.  Surely if there are any, I’ll be able to tolerate them OK. This week past week without any chemo has been nice.  Looking forward to the new regimen – and not having to go to KC.

The side of my face – on my cheek has lightened considerably and is drying up – some scabbing – and ITCHING!!  I hope that is a good sign. The picture will be below in the scroll down area.

And so, my saga continues. I’m so thankful for every day that God allows me to enjoy.  And those down days, I know He still holds me by His right hand, and I just cling tightly to Him and get through those days, too.  I continue to thank you all for your prayers.  Thanks for hanging in there with me.  Means more than I can possible tell you.  Much love to all of you!!!!

And as always.....I'm in His care....

 You can scroll down for the most recent pictures.

All of the upper areas are very dry and scabby.  The part nearer my eye brows is fluid filled and has bled out 3 times this week and once in the night.