Back to riding the roller coaster

I got 3 doses of the Avastin, and could tell it was not working either. So Dr. Page looked long and hard to find the next step.  It is a drug I’ve never heard of – Vinorelbine.  It is given IV push, after a steroid and an anti-nausea drugs are given IV.  It is given once a week for three weeks, and then off a week. I’m back to lab work weekly.  The common side effects are nausea, effecting the lab work, fatigue. I took my first dose last Tuesday. I can’t tell yet if it is working after just one dose.

I can tell you that things have pretty well exploded on my forehead. The “horn” up on my head is really sticking up, but it has not bled for about a month The big bleeder is from the tumor just above my nose and left eye.  The results are that my left eye is very involved – two tumors and very bruised and swollen.  So, I mostly see out of my right eye – which is also involved.  You’ll see below the discoloration on the right side of my face. I’ve had to put a dressing over the lower tumor because it continues to drain and build-up of serous drainage.  I have to change it two to three times a day and at least once in the night.  So, I don’t ever get a whole night’s rest.  I usually get up between 9 and 10, eat breakfast and go back to sleep in my recliner until about 1 to 2 in the afternoon.  I don’t really feel like “getting up” until about 3 til 4.  Eating times end up being pretty crazy around here!

It was a great week this week having, Jeannine and the girls come from Wed-Sun on their spring break.  They went to church with us this morning and left about 1:30. Mark was in and out during the week.  He’s looking for a house in Hutch and has to be out of his house by the end of the month. The price of the rent just is too high there. He can work from home pretty much with a trip or two here and there. He’ll probably be as close to the Wichita airport from here as he was to the KC airport there.

The weather has finally turned to spring here – not warm, but at least the snow has stopped – I think.  It has snowed here in April before, but I hope we are over the nasty cold that we’ve had all winter here.

Tues

I didn’t get far Sunday night – wasn’t very inspired to write I guess.

Yesterday (Monday) was an exciting day.  I got up exceptionally late – 10:30. I was in the middle of fixing my breakfast and felt like I needed to take my BP.  I got to my recliner and my BP was 76/53. I managed to get to the bathroom and put my head down.  I stayed that way until I felt like I could get to the bed.  I knew instantly that I needed fluids.  Guy had to literally dress me.  I kept telling him to get the purple shirt – “get the smurpple, get the smurpple…”  He finally figured it out. I could not talk him through the rest!  He finally figured that out, too.   What a pair we were!  J  I got there and got my fluids and finally started feeling better.

I took my 2^nddose of this new IV med this morning.  Before taking I met with Dr. Page (in McPherson). I shared with him the email I had just received from Dr. Powers (in KC), Here is what he wrote: 

I hate to be the one that says it, but I think its time to let hospice into your life here soon. They can help in so many ways... because the pain is getting worse, I think we really need to switch philosophies to more supportive care, if you don’t see any change with this chemo, even after the first 4 weeks. This would mean no more chemo, but that’s ok, because these last few weeks of pictures is showing that the systemic treatment isn’t working anymore.  I just want to make sure you are cared for effectively, compassionately. Hopeful that you can get some more quality time...

Ben

Dr.  Page agreed with Dr. Powers.  He did talk about palliative care and how that might be helpful to get on board now. It is just a step before hospice.  They could help out where needed and help me eventually transition into hospice.  But for right now, Page felt like doing this procedure Friday might help to relieve some of the pressure and misery if they could get the bleeding to stop.  

This procedure I’m going to have in Wichita is called embolization. They will go in through my neck, shoot some dye into my head to show up the vessels. They will then locate the blood vessels that are feeding these tumors and zap them to try to stop this bleeding.

And in the meantime – unless I’m ready to throw in the towel now – we would continue with the current chemo to give it a try to work.  So, I went ahead and took the treatment today and got along fine.  I can see little places here and there that I feel are receiving the benefit of this chemo.  It’s just not kicking it in the head. But, then I guess I’m a little impatient….. J

I have to face the music – at some point, I’m going to have to reach the end. I’m just now sure when that is…..I don’t think I’m ready to look at it yet.  This is all, of course, not taking into consideration God’s divine intervention. I still ask Him daily, with faith believing.  

Please pray this week for:

PEACE as I go for this procedure Friday (and that it works!)

This current chemo to WORK

God's divine intervention

Wisdom in future decisions 

As always......I'm in His hands.......

Scroll down for pictures

I have my own little unicorn horn - it's just sort of misplaced! 😀

You can see a tumor just in the inner corner of my left eye, just below the big one over my nose.

This is the area that I keep bandaged - in the triangular area in the 6:00 position. You can see two little places that are about to bleed.

My right eye involvement.  I can open that eye well.  There are no real tumors in this area - just discoloration.

Out with the old chemo, in with the new…..

Tuesday

I’m so far behind, I don’t know if I’ll ever catch up.  I think I left off before I saw my doctor the last time and before the CT scan.  I know I’ve put short snippets on FB, so sorry for the repeats, but not everyone who reads my blog is on FB.

The last time I saw Dr. Page, it was shortly after the Gemzar/Taxotere combo therapy.  I was convinced it had stopped working.  There was no improvement whatsoever.  Dr. Page looked at me and agreed.  You can see pictures at the end of the blog.  He looked around on his computer and came up with Avastin.  It is not classified as a chemo, but rather a blood vessel growth inhibiter.  It cuts off the blood supply to the cancer cells, and they die.  It is not listed specifically listed for AS, but neither has any of the other chemos I’ve taken.  I was just happy to see there was something else to take.  I thought it was the end of the road again.  Dr. Powers (KC) had mentioned Avastin over a year ago, but for some reason went on with a chemo at that time.  Avastin is given IV every other week.  I get labs every week to see if I need Procrit – a hemoglobin builder. Avastin is not supposed to affect the blood counts.  

The day before I saw Dr. Page, I got my CT scan.  I saw Dr. Page at 9:30 in the morning, so while they did have the report, they didn’t have the comparison with the last scan report. Dr. Page looked at the current report and said he didn’t see anything there to be concerned about.  That was a relief, because it seemed my whole life hung on this scan.  Later in the week, I got a copy of the comparison with the last scan, and there was actually improvement!  Praise the Lord!!  That was reason enough to fight on!

The first dose of Avastin went well.  They had to go more slowly and take my BP every 15 minutes, because it does cause a rise in BP.  But my BP has been running so low, it never got really high during the infusion.  It does run higher from day to day, but not dangerously high.  I didn’t really see any side effects until the second week – this past week – when the weakness set in.  An occasional slight headache and wobbliness were also noted.  Other than that, I’ve really felt pretty good.  Avastin is tolerated well by most people.  The first time I was to get Procrit, my hgb was high enough that I didn’t need it.  Each week my lab work has improved so I haven’t needed to take any of the shots.  Today, I felt fine during the infusion and haven’t noticed any untoward effects so far.  But I can really see an improvement in my face and head.  You’ll see a major difference in the pictures below.  So something is certainly working.

I’ve got this one spot on my forehead that is frustrating.  If I bump it, it begins to bleed, and bleed, and bleed!! I have to put a pressure dressing across it and keep it there for a day or two.  About a week ago, I got up to go to the bathroom in the night, and it had started bleeding – all over my pillow and my sheets.  I had to quickly grab a tissue, and another tissue, and another! When I would grab another tissue, it would just pour out of the bump!  It even got into my left eye.  I had to rinse out my eye with saline eye drops. I thought it was pretty much drying, but I must have bumped it in the night or accidently scratched it, so I was up at 4:00 am this morning, trying to stop the bleeding.  I put xeroform on it and folded up a 4x4 and quickly slapped it on and taped it down very tightly.  The first few times, I left it on too long and when I took it off, it had dried too much, and pulled the scab off, and it bled again.  Now, I leave it on 12-24 hours, and remove it.  I took it off this evening, holding my breath, and so far, so good this evening.  Now if I can just keep from bumping it in the night!

My biggest issues are swollen eyes, making reading difficult, and my fingernails continue to deteriorate.  I’ve lost 2 nails on my right hand.  

It is kind of surprising that my right hand is affected more than my left since everything affected is on my left side.  I can see normal growth at the base of most of my nails, so they are just going to have to grow out.  Nails take about 6 months to grow out.  So far, I’ve been able to still play my keyboard at church.  My eyes bother me more seeing the music than my nails and neuropathy do.  

We’ve enjoyed another week of Mark and Amy here.  Mark did a lot of the cooking again.  We enjoyed that.  And he did a lot of little errands that we needed done.  It was so easy for him, but just too much for us.  He hung a big mirror, and helped to hang a few wall hangings I wanted hung. 

This is quilted by using embroidery machine.

This is a wall hanging he put up in my bedroom.  It was done many years ago and all hand done.  It is one of my favorites.

 They went home to OP yesterday to get ahead of the storm.  

Here's a few pictures of Annie.  She loves to dig me out of a blanket I take a nap in and then wants her tummy rubbed.

Right after we got home from McPherson today, it started sleeting, and soon changed over to snow.  The last measurement was 7 inches.  It came down so fluffy and beautiful – very little wind.  Mark said it was a white-out in OP.  Then next weekend, another storm is to come through.  Can you say, “Tired of winter”????

I’ve done a little sewing.  I saw a tutorial from Jordan Fabrics for a table runner with prairie points. It is made with charm squares (5” squares).  I think it is going to turn out really cute.  I’ve also crocheted 2 hats, and I’m working on the 3^rdone.  2 of them are basically the same pattern – just different colors.  The 3^rdone is a different pattern – not liking it all that much, but maybe when I get it done, it will look better.  My collection of hats gets used a lot in the winter.  

I did a couple of DIY projects.  One was a place to hang my necklaces.  It is just one of my thread holders.

We have this shoe store in McPherson – Brown Shoe Fit – that we just love. The owner is the most likeable guy and obviously a great sales person, as we both buy something every time we go in there.  They had this big clearance sale the other day.  Guy found him a pair of shoes, and I found these cute boots 

– and they fit!! Then he showed me this other pair, said they were the last pair he had in the store.  

Since I was already going to get the 1^stpair, we couldn’t afford for me to get two pairs.  He was holding them up, waiting on me to make a decision, and Guy jokingly said, “I’ll give you 10 bucks for them.”  The guy thought a second and said, “OK!”   WHAT??  The shoe was originally $150 marked down to $99!!  He said that we were good customers and shopped there often, so he just made us a deal!!  So, I walked out of there with two pairs of shoes – one of them costing me $10!!!  

Wednesday

It got too late last night to get this published, so I’ll finish.  Guy is outside with his snow blower – using it for the first time.  And someone is clearing off the driveway with one of those little skid steers (I think that’s what they are called) with a blade on the front of it.  How nice of them!!  It was one of the neighbors!

When I got up this morning, I found my glasses on the floor beside my bed. I must have stepped on them because one of the lenses was lying beside the rest of my glasses.  The little plastic strip that holds the lens in place was broken.  

Luckily, I found an old pair – don’t know if it was the last one before my current ones, but at least they are working for now  - until I can get to Hutch to have the others fixed.  

We just came back from a little drive around town.  All the streets are plowed, so it is easy to get around.  It is just a winter wonderland, so beautiful!!

Annie finally got used to going out in it - almost up to her chest.

 So far, I am feeling good.  I didn’t have to get up in the night to put a dressing back on this alien on my head.  I hope the scab holds long enough for the Avastin to kill it!

I have some choices to make this afternoon – working on that little table runner, crochet on my hat, or take a nap.  Guess what’s going to win out???  J

I think this pretty much catches me up to date. As always, I really appreciate all your support and prayers.  So far, something is working, and I’m hopeful once again.

As always…..I’m in His hands….

Scroll down for pictures

 Jan. 27th when the double chemo stopped working.

 You can see the pressure dressing on my head at that time.  Lots of purple and lots of fluid (blood).

This is taken yesterday.  You can see the one that keeps bleeding - in the 2:00 position. Hardly any fluid under the skin now.

The side of my face is drying and there are two major spots instead of 3.

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.