Saturday, November 17, 2018

A nail-biting week - sort of

The 1st part of this week was nerve racking.  I saw Dr. Page in McPherson on Tuesday.  He agreed my head and face were “exploding.”  He said he had turned in the orders to my insurance company 5 days ago, and he was just waiting to hear from them.  He said he would administer the Gemzar on day one and then the Gemzar and Taxotere on day 8, and then I would be off a week.  I don’t think he had read the specific notes from Dr. Powers in KUMC, because that is not the schedule Dr. Powers said would occur.  I told Dr. Page that Dr. Powers said it would be given as both drugs being given the 1stday, then I would be off a week, then repeat until I had had 4 rounds of chemo.  Then I’d see Dr. Powers again to see how things were going.  Dr. Page said there were several ways of giving the meds, but his way was the typical way.  But he would go back and check Dr. Powers notes more closely.

Wednesday, I called the office to check on the insurance approval, but must have called too late in the afternoon since no one answered. I left a message.  Thursday, I called in the morning, and told Vickie, one of the nurses that I was really desperate to get started this Friday, because next week would be Thanksgiving, and all my family would be here.  Plus they would be closed Thursday and Friday.  And I knew I would have to premedicate the day before the chemo – which was Thursday!  She said she understood, and there were several other patients who were waiting on insurance confirmation, so she was getting ready to call me insurance company right then.  Needless to say the waiting was excruciating!  I was down to one day!  She told me if I was not able to pre-medicate, they would give me some extra steroid in my IV. FINALLY, shortly after lunch she called and said I was a GO for Friday.  Whew!  What a relief.  However, she said the schedule was Dr. Pages schedule.  Then we got to trying to figure out how it could be given two weeks in a row, when they were going to be closed two days the next week.  I didn’t want to wait another 3 days to start and get off onto a Monday schedule rather than a Friday schedule.  She said she would check something and call me back. When she called back, she said, “Well, we’ve upset the fruit basket!  You’ll be getting both this Friday, be off the next week, and then both meds the next week.”  Well, that didn’t upset MY fruit basket!  That’s what I wanted in the 1stplace!  They had finally checked Dr. Powers notes and decided to follow them. SO, I quickly took my 2 dexamethasone tablets so I could get 2 more in by bedtime.

Oh, boy!  Did the hot flashes begin!  What is weird is at night, if I don’t move for a while, and then I move any part of my body, I break out into a sweat – enough that I’ve had to get up and change my clothes (in the past times) I had kind of forgotten that part.  Didn’t get much sleep that night (steroids and head itching!), but I thought I could catch up during the infusion Friday.  I had to be at the hospital by 8 to get some baseline blood drawn.  Then at 8:30, I went up the infusion center so Dawn, the main nurse, could do her teaching about the two chemo drugs while we waited for the lab work to come back. In about an hour the lab work came back. My WBC had come up considerably, so I was good to go.  A fairly new nurse was there that Dawn was training.  She had been a nurse for 20 years, but only been working there for 3 weeks, 2 days a week.  I was a little nervous to have her access my port, but with my weight loss, it sticks right up there, and you can even see the triangle of 3 little dots that you have to hit the middle of.  She did just fine.  Dawn was right beside her the whole time as she administered the various IV, including the pre-med and the chemo.  Dawn explained that when she started the Taxotere, they would run it in very slowly for this 1sttime, and be checking my VS every 15 mins.  Well, there goes my napping!  Oh, well….I really didn’t get that sleepy anyway, because I decided I would try what I had read about helping to prevent neuropathy during infusions that caused that.  Some research had shown that if you keep your feet and hands cold during the infusion, it would reduce the chemo to that area, and thus reduce the neuropathy.  I sure don’t need any more of that, so I thought I’d try it.  I fixed two ice bags, and fastened them to the bottom of my feet with ACE wraps.  Well, the nurse actually did it, because once my port was accessed, I couldn’t use that side very well.  She finally got them in place, but as time went on, I knew I could not keep them on the whole time.  As I recall, using ice packs, they are to be on for a while and then taken off, then put back on.  So eventually I removed them.  After that, I just place them on the foot part of the recliner.  Then I could set my feet on and off of them.  That was more tolerable.

I did just fine with the administration of the Taxotere.  They kept asking me every little bit if I was OK. I couldn’t really tell any difference, and my VS were fine every time.  My worse trouble was my restless leg syndrome that has been bothering me for about a month. It started right away while sitting in their recliner.  It nearly drove me nuts!!  I had made my essential oils recipe for this last week and had been using it at home at night.  It really does work.  I don’t usually use it during the day, because I can get up and walk it off if it gets bad. Plus, I don’t like getting that smell all over my pant legs and smelling like a walking advertisement for EOs. You can generally tell people who are really into using them, because you can smell them as soon as you get close to them.  J  Well, anyway, about halfway through my procedure, I stood up from my recliner and exercised that right leg a bit, but it didn’t help.  Once they finished with the Taxotere and started the Gemzar, they didn’t have to take my VS anymore, so I unplugged my IV pump and rolled it down the hall to the restroom.  That was enough walking to relieve the RLS.  Next time I think I’ll rub my legs with the EOs before I go, and not worry about the smell.  It is coconut oil with lavender, Peace and Calming (or Plant Therapy’s equivalent – easier to get and much less expensive), and cedar wood.  It doesn’t smell bad – just smells.

While I was getting my infusion, Guy had a lot of time to kill – 8-1:30.  He picked up my meds from Walgreen – two pills for nausea, and more dexamethasone.  He also picked up a turkey and a few needed things for Thanksgiving.  When I got ready to take my evening dose of dexamethasone, I noticed that the directions said to take one 4 mg tablet twice a day (the day before the treatment, the day of  the treatment and the day after).  I had always taken 2 with all my other IV treatments.  Dr. Page had written it for one.  What I had been taking was left over from the previous IV infusions, and that prescription had come from Dr. Powers.  Well, here it was after hours, and no chance to call until Monday.  So, I decided to go with my usual two.  I didn’t sleep any last night!  Thankfully the RLS didn’t kick in, so I stayed in bed and just (at least) rested all night.  Since I was awake, I decided to get up and go to coffee with Guy.  I’d always wanted to see what it was like at that hour (6 am) at the grocery store with all his buddies. And sometime women did show up. Then Guy suggested that we go to Scrambled Sam’s in Lyons.  It is absolutely the BEST place to get breakfast for mile around!  And we had not been there for a long time.  So that’s what we did.  

When we got home, I was able to get a nap for about an hour and a half. Then my alarm went off at 9 to take my next dose of dexamethasone.  UGH! Sleep over for now!  I remember now that I don’t sleep much for 3 days and 3 nights when taking these steroids.  During the day, you’re tempted to get lots of things done because you are “up.”  But I’ve learned from the last time that I have to pace myself so I don’t use up all my energy and then “crash” the 4thor 5thday.  I do have a good bit of stuff to do to get ready for the kids coming.  Doing all the bedding laundry.  Guy will help me get the beds made, since that wears me out even when I’m feeling good.

I think tonight I might take just oneof the dexamethasones. Perhaps I can get a little sleep.  I’ll tell you some of the side benefitsof this steroid.  The 1stday, the swelling went down in my eyes.  What a blessing that was!  Worth the price of the ticket!  It also helped the pain in my knee and the pain in my side/rib.  The energy you get can be a blessing or a curse – depending on how you manage that.

So far, I have not felt the flu side effects they talked about.  I did feel a little queasy about lunch time today, but I think it might be more the breakfast I ate.  I’m not used to eating that much.  I took one of my nausea pills, and that helped.  Today, I’m a bit dizzy at times – nearly fell off the piano bench while practicing for an offertory tomorrow.  JSo. I decided to eat a little potato soup, and sit and rest and talk to you.  AND watch Alabama football.  It started at 11 and we forget until 12 so we missed the 1sthalf.  That was apparently a good thing because we play ed the Citadel, and at half time it was 10-10!  How scary that would have been to watch – would have been too hard on my nerves and energy.  Thankfully, they came out looking like ALABAMA during the 2ndhalf and whooped them!

I think we have our Eagle Street house sold.  We showed it last week, and the guy came by a couple nights ago, and we signed the preliminary papers from his lending institution.  If all goes well we will close on Dec. 15th.  It’s kind of bitter/sweet for us.  We worked so hard to have it all fixed up (and spent money!).  It is such a so cute and cozy little house.  The buyers seems like a nice young couple with a baby. This will allow us to clean up a number of loans we have at the bank and give us considerable breathing room – especially after the fire this past spring.

Well, I’m hopeful that this chemo treatment is going to work, and I’m praying the side effects are minimal or tolerable.  After this next lab work, I’ll most like have to begin the Neulasta shots to stimulate neutrophils produced by the bone morrow.  This causes bone pain, and I remember from the last go round of IV therapy (that put me in the hospital), I had to take a shot of that before we discontinued that chemo, and I remember thinking, “I don’t ever want to have to take that med again!”  Well, here we are – I guess I’ll be taking them, because both of the chemo meds drop your blood counts.  She said I’ll just have to take pain meds to get through it.  Last time, I used a heating pad, and that helped some.  I just . have. to . get. though. this!    I can do this – if these meds are working.

Praises this week:

My insurance approved my meds
My schedule for them worked out just right
So far, so good with the infusion – no allergic reactions during the infusion.
No major side effects yet – still on the steroids for that.
My kids and grandkids are coming next week.

Prayer list for this week:

Pray these chemo meds WORK
Pray for the incessant ITCHING on my head lesions to go away!
Pray the side effects are minimal
Pray this bought with restless leg syndrome goes away – FAR away!
Pray I don’t gain back a bunch of weight with these steroids.  I like right where I am right now (40 lbs less from my highest after the last go round of steroids.

I hope y’all have a very Blessed Thankgiving!  We all have so much to be thankful for.  Thank you, Jesus, for all your blessings.

And as always…….I’m in His hands….

Monday, November 12, 2018

This stuff is progressing rapidly.

Yesterday was a great day at church.  I wasn’t sure I was going to be able to play my keyboard, because my eyes (left eye particularly) was so swollen, but I made it through. Communion was served – always a special time.  6 people joined our church. One was a couple that apparently used to attend, but now they are back.  She is in our Bible study group and is such a blessing there.  One lady who several months ago, I invited to church.  She came the next Sunday and has been coming ever since.  Her son and daughter-in-law were there.  So great to see them!!  Three ladies, one of whom lives next door to our Eagle Street house and I think her two daughters, but not sure about that.  The one who is on Eagle is the daughter of the lady who years ago invited me to the Bible study.

After the service, we had a pot luck dinner in the basement.  I went over to the table with the three ladies to tell them how glad I was that they had joined the church.  The one young lady said, “You look beautiful today.” WHAT???  I didn’t think I heard her correctly,so I said, “What did you say?” “You look beautiful today.”  I started to cry!!  She got up and gave me a big hug.  I told her she just made my day.  Believe me, I’m about the farthest thing from beautiful that I’ve been for a long time!  My forehead was so swollen, and since I had bled out that morning in the shower, I placed a bandage over the area and wore one of my warm crocheted hats – a pink one with a crocheted flower on the side.  I was afraid to wear my wig for fear that I might start bleeding again and get it on the wig.  Anyway, here was a young lady that I didn’t really even know, but she was certainly an angel that God sent to me out of the blue!  I couldn’t get her out of my mind the rest of the day.

Then, this morning I woke up, and my left eye is nearly swollen shut. I can barely open it.  And my upper lip is all puffy – I look like I’ve been in a fight or a car accident.  How am I going to make it until Friday when I get the IV chemo??? I see Dr. Page tomorrow.  Maybe he will start it early.  This cancer is progressing at an alarming rate right now. My face is so grotesque, even I can hardly look in the mirror.

Yesterday, I quilted a small wall hanging and sewed on the binding.  I worked on the hand stitching part of the binding last night, but didn’t get that part finished.  

I’m not sure I can see well enough to finish the binding today. This is my first attempt at free-hand quilting a design other than meandering.  It was hard in the part where the flowers were because I could not see where I had stitched – partly because of my vision, and partly because the thread just didn’t show up against that design. If the swelling in my eye will go down just a little I might be able to get it done today – the first thing completely finished since going back to my quilting. I have another really pretty panel I want to do the same thing to, if I can get to it.  I’m still waiting on my backing fabric to come for my applique flower quilt I got together.  If this upcoming medication doesn’t take over soon, I’ll not get to do any of it.

It snowed overnight again.  Looks like we probably have about an inch.  The other snow had just about melted except on the north side of things. I can hear the wind really blowing today.  Thankfully, I don’t have to get out.  When I finish this, I will just sit with my ice pack and listen to Pandora

I’m pretty discouraged today.  I hope I can make it until Friday.  I sent pictures last night of this rapid progression to Dr. Powers, but have not heard back from him.  I don’t know when he leaves for Italy. He may be on his way now.

When you think of me, think of these pictures. This is the way I feel inside and want to be remembered.

Please pray for:
My eyes – don’t really want to be blind.
My lip(s) – I look like a hawk with a big beak.
My mood/attitude – don’t like being down.
Slowing of the spread of this cancer and the medication will work.
Itching of the lesions
Dr. Powers – that he comes home with a miracle.  I know that is a stretch, but I can hope.

And as always……I’m in his hands.

Scroll for pictures.

Wednesday, November 7, 2018

Test results and visit with Dr. today

I got to the cancer center at 11:00.  The infusion center accessed my port and drew my lab work. Then I went for the CT scan.  As many of those as I’ve had, it still feels so weird when that contrast goes in my IV. It starts in your mouth and moves down your body.  It feels for the world like you have wet your pants!  It makes me feel a little short of breath for just about 60 sec.  That’s the only part I don’t really like.  After that I had to drink, drink, drink water to flush that contrast out of my system.

We went to lunch after that, and then waited…….and waited…..until 3:00 when we met with Dr. Powers.  When he came in, he gave me a big hug.  He always gives me one at the end of the visit, but this was a 1st at the beginning.  He got right to it.  “Your lungs have continued to progress with the cancer.”  I knew that would be the case, because my rib had started to ache again for about a week.  I didn’t remember injuring it, but I suppose it is possible – could have just turned wrong in the night.  Anyway, I knew that had not healed, and I was expecting the worst this time.  However, it was not as bad as I had expected.  One of the spots had grown from 1.9 cm to 2.9 cm. That was the worst one.  I think there are 4 or 5 lesions.  A new small one had developed, but one of the existing lesions had not changed.  I asked about my occasional coughing, and he said it was probably most likely due to allergies (which I have), because these lesions were all peripheral and not impinging on anything that would make me cough or be short of breath.  So overall, I felt pretty good about that. I really thought my lungs would be full of lesions, given how my head has been affected.  

My lab work was better than two weeks ago, but my counts are still really low.  The improvement was good news for me.  My WBC went from 1.9 to 2.6.  My ANC (susceptibility to infection) went from 0.9 to 1.3.  It needs to be 1.5.  So I was getting closer to that.  My Hgb went down a little bit – from 10.1 to 9.9.  That wasn’t too much of a drop.  My platelets went from 91 to 136.  The lower level for those is 150.  My liver enzymes are still within normal limits.  AND there are no lesions on my liver!  Everything else is pretty much normal – except for my head and face and lungs.

I told him I had felt so good for about 6 months now, and I wasn’t looking forward to anything rocking my boat, but I was ready to go for these two new drugs (the drugs are not new – just new to my treatment regimen).  He said they are usually given with one one week and then the two the next week and then off a week.  But he said that sometimes they give the two on the same day, and then off the next week, then the two the next week, and off a week. He said that he found giving them together seemed to be tolerated better.  The one drug tends to make one feel like they have the flu for 72 hours, so he will recommend steroids for 3-4 days after the treatment rather than just one day after to counteract those side effects.  Other side effects are gi symptoms, fatigue, neuropathy (UGH!), eye issues (UGH since I already have eye issues), rashes, etc.  The effects are cumulative.  (UGH!) He said, “It WILL rock your boat!” I think I can handle it – with Gods help!  He said he would have me go 4 rounds – that would be 4 months at every other week.  Then he’ll see me back in his office.  I’ll get the chemo at the infusion center in McPherson under the direction of Dr. Page.  I’ll continue to send him pictures weekly and tell him how it’s going.   I’ll start a week from Friday on the 16th. I’m not to take any more of this IBrance, so it will give me a week and half for my blood counts to bounce back a little more.  I’ll have one treatment before Thanksgiving, and be off Thanksgiving week.  I should be fine for celebrating Thanksgiving with my family.  By Christmas? That might be a different story, but I’m going to keep a positive attitude about it.  With God’s help and y’all’s prayer, I can do this!!!

He took pictures of my head and felt my forehead.  He was surprised that the whole area is spongy feeling. He thought it would feel hard. Overall, I think he was pretty amazed at how well I’m doing.

On a side note, yesterday as I was coming in Mark's front door, I didn't get the inside door open enough, and when I stepped inside the heavy storm door, I ran head-long into the inside door - BAM!!!!  Right directly on the two scabs!! You want to talk about PAIN!!!!  I was just sure I broke that whole area open, but there was no blood.  Thank the Lord!!

Dr. Powers even said that after this next round of treatment, if it was not all that successful, he has a couple other chemo drugs that are fairly new but are FDA approved, but not much data collected on them, and he would be willing for me to try them if necessary. SO, I am not headed down the dead-end street that I thought was going to be.  As long as I can hold on, they keep coming up with new meds and new ideas. Unfortunately, the up and coming immunotherapy is not appropriate for me.  The stem cell treatment, takes you to death’s door before it begins to help, and that is not for me either.  I’m not up for anything like that.  Don't believe I could survive it.

We’ll just play it by ear and see how it goes.  I told him as long as my quality of life was pretty good and there was something I could do, I’m going for it.  I told him that I knew I was still here for a reason – some have even shared the reason with me.  God was not through with me yet; I still have work to do.  I told him that God’s plans are not man’s plans, and with everyone praying for me, that’s why I’m still here.  

He said he was going to the big angiosarcoma conference in Rome Italy next week and he is going to be presenting my case. If someone comes up to him afterward and says they have the latest and greatest for me, he’ll get in touch with me immediately.  And if he discovers something better anywhere along the way, he’ll not be afraid to contact me.

So, I say all this to say that I left his office feeling hopeful. I’m not looking forward to having “my boat rocked”, but it beats the alternative!

As always, I continued to thank you all soooooo much for your prayers. I know they keep me going and help to give me peace of mind through it all.

As always…..I’m in His hands…..

PS  Hope to make it home safely tomorrow through the predicted snow!

You can scroll down for pictures.

That whole area is basically what I smacked into the door! 😏😜

 The lower part of my cheek is really bulging out now.

My left eye is really involved (swells).

My right eye is actually better than it was a week or so ago.

You can really tell how swollen the whole left side of my face is.

Wednesday, October 31, 2018

Some good news and some bad news

You know that I’ve been toying with the idea of going to MD Anderson in Houston.  Many have urged me to go, but I’ve had a bit of reluctance to do so.  I have watched on the AS FB site and noticed that two particular medications have been used for patients with AS.  So, I decided to write those two meds down and ask Dr. Powers about them.  Then two days ago, I got an email from Dr. Powers in response to my last email I sent him with my weekly pictures.  He said in the email that this IBrance pill I’m taking is obviously not working, so we’ll be stopping that after I see him next week and get my CT scan.  And wouldn’t you know it – he said I might want to consider those two drugs that I had on my list to ask him about!  I think that is an answer to my prayer!  Why go to MDA when I can get the same thing through Dr. Powers?  The other meds mentioned on the AS FB site, I’ve already had.   So it just seemed like a God-thing to me.

I’m not exactly looking forward to IV chemo again – and the side effects that go with that, but I don’t like the other option (which is doing nothing).

Yesterday, I went to see Dr. Page in McPherson.  I wanted to see him before seeing Dr. Powers next week.  I thought he should see my head and where I’m at right now since I had not seen him for a while. And I just wanted to talk with him about these two IV drugs, MDA, and just my feelings in general.  I really do like that man.  He is young but seems so knowledgeable.  He is very sensitive.  He talks to me very directly and on my level.  He validates my feelings and my concerns.  I asked him, “If I were totally your patient, would you do anything different from what has been done?”  He then explained his philosophy in treating all cancer patients.  He considers all aspects of care, but looks at quality of life as being the most important.  He said if I were coming in there in a wheel chair, had been losing a lot of weight, and slept 20 hours a day, he would not recommend continue to do anything aggressive, but my quality of life is still really good, so considering continuing to fight this is a very reasonable course to take.  He said he occasionally sent patients to MDA, but for 2 reasons – they needed a very specialized surgery they only do there or for clinical trials.  I don’t meet either of those criteria.  But he did say that if I wanted to go there, he would make the contact, arrange for lodging and all the details, and they would call me.  After talking with him, I felt so much better – just reassured that I was on the right track where I was.  I would get the IV meds there in McPherson and would be monitored closely for side effects and adjust the dosage accordingly.  He talked about the SE of those meds, and neuropathy was one of them from one of the meds – not the other.  These meds would both be used in combination with one another.  The biggest thing is the blood counts.  I’m not very high right now going in, but we’ll see what my blood work shows next week.  It sounds as those it will be very much like the 1stIV chemo that I took for 7 months.  I did pretty well with that – just mainly the neuropathy.  I'll know what to expect this time with the use of the steroids.  I asked him about those “cold boots” that some recommend to decrease the chances of neuropathy – I sure don’t want that to increase; I have enough permanent damage from that 1st med.  He didn’t know if that was particularly effective or not, but it wouldn’t hurt.  Eating ice during that last IV chemo certainly kept me from getting mouth sores which was very common with that med.  I’ve wondered if that particular treatment time was not all that effective because I did use ice, and it was too close in proximity to the cancer on my head and cheek.  I’m not likely to have cancer in my feet, however, so it wouldn’t hurt keeping the chemo from getting to the cells there.  

I talked about how I was a bit reluctant to rock the boat because I had been feeling so good for so long.  I’m not in as good a shape as I was when I started that 1st chemo, and I’m nearly 2 years older!  Two years ago, I was pretty much at the peak of health. (other than having had several surgeries to try to remove this evil beast!)  But Dr. Page reassured me that he felt because my quality of life was really good right now, it was not time to give up.  With my attitude and fighting spirit, I could handle it.

So, after talking with Dr. Page, I just felt a lot better – more reassured.  Now we’ll see what the mood of Dr. Powers is when I see him.  We’ll go up to Mark’s on Tuesday.  My lab work and scan with be early Wednesday morning, and I’ll see Dr. Powers at 3:00.  I’m a bit nervous about what my lungs will show.  I’m trying to get prepared for the worst there, because the last time I was so hopeful, and the news was not good – lung-wise.    

On a lighter note, I finished appliquéing all my squares, and have started sewing the blocks and sashing together.  I'm trying to decide if I want to redo that one block that I appliquéd using my sewing machine.  From a distance, one would never know the difference - but I know it is there, and I don't like like it!  😀 For now, it is in the lower left corner.

Words cannot express how much I appreciate your prayers, all the your kind and encouraging words you give me, and your love.  It all keeps me going!

Many things about tomorrow
I don’t seem to understand.
But I know Who hold tomorrow,
And I know Who holds my hand.

And as always…….I’m in His hands……

Saturday, October 27, 2018

Thinking again…..

I belong to an angiosarcoma FB group, and many/most talk about going to MD Anderson and Dr. Ravi who is supposed to be the AS guru.  I’ve wondered at different times if I should go there.  Houston is not exactly handy – over a 9-hr drive. And there is no handy place to stay like it is at Mark’s in Overland Park, near KUMC.  I’ve even looked at housing around or near there, and they are mostly over $100 a night.  I’m not sure I would be up for starting all over with someone new.  It’s quite possible I’m too far along anyway.  I don’t know……  If I were 25 or even 40, I’d go for it for sure – probably would have started there.  But I’m 72. And here’s the other thing.  If AS were curable, I’d be a lot quicker to jump on it.  If I would have a chance at that 20 more years I spoke of in the last blog entry, yes, it would be worth the effort.  But it is not curable.  Would it be worth the hassle and perhaps pain and sickness from the treatment to extend my life another 6 month?  A year? 2 years?  I don’t know.  And from what I’ve seen, I’m not sure that the treatment would be all that different from what I’ve already had.  When you are dealing with constant mutations, it is like chasing fire flies on a summer evening.  By the time you reach that spot where you saw the light, it has already moved on.  You might be lucky enough to catch one, but eventually it’s light goes out.  And you’re off chasing another one.

I may try to call someone there and explain where I’m at and what I’ve done – to see what they say.  I’m going to see Dr. Page Tuesday.  He is with Cancer Centers of Kansas out of Wichita, but I see him in McPherson – about 20 minutes from here.  He really is just a conduit through which Dr. Power’s orders flow.  But I’m going to ask him if I were his patient, would he be doing anything different.

Like I said, if I were younger, this whole thing would take on a different outlook, and I would aggressively seek out the best treatment available.  I don’t think that the KUMC doctors act in vacuum.  I know Dr. Powers has surprised me with medications that I did not know about – and HE didn’t even think would work.  I know the field of oncology is working on a lot of this immunotherapy (even though it is not appropriate for my markers – boo) and even the newest – stem cell treatments.  So, who’s to say that in another 3 months somethings might come up for me.

I know that God has a plan for my life.  I don’t know if that means He is getting ready to take me home in the near future, or if He has another treatment modality just around the corner. Or if He decides it is time to finally divinely heal me.  I gotta be honest – I’d sure like it to be the last of these options, and even more honest – that it be sooner than later.  I just know that I have to remain in the boat.  If I jump out and try to get there on my own, I’ll drown.  I have to admit, it sure is hard to trust completely every second of the day and night.  I do trust Him and His plan, but there are so many questions that remain unanswered, and I’m just human, so I wonder…..

Please help me pray for direction.  Should I change horses in the middle of the stream?  Should I just be content to enjoy the time I have, especially while I feel good?  Am I just grabbing at straws?  I don’t want to just sit back and ignore options that are there, if I should be doing something about them.  But I sure need the peace and assurance that I’m on the right track.  I don’t want the indecisions to consume my thoughts every day. I want to go about my days enjoying what I have. Paul says in Phil. 4:12 “I know how to live on almost nothing or with everything. I have learned the secret of contentment in every situation, whether it be a full stomach or hunger, plenty or want.”  TLB  Perhaps I should just follow his example.  But I’m a fighter, not a quitter.  How do you know when to quit fighting?  I don’t know, so I guess I’ll go on fighting as best I know how.  Just wish a sign would fall out of the sky that says, “THIS way!”

But as always……I’m in His hands…..   (scroll down for pictures if you want)

Affecting my right eye now.

Monday, October 22, 2018

Thinking about some things...I know, that can be dangerous.

Writing some of my thoughts today….

I don’t often write out a lot of my inner thoughts, because many of them aren’t very inspirational.  I try not to go down those paths because they don’t really take me anywhere, but I’m just being realistic today for some reason.  I used to tell Guy not to be so negative, and he would always tell me, “I’m not negative.  I’m just being a realist.”  Well, here I am…..

I just got to thinking this morning of my parents, and how they lived into their 90s.  And so did Guy’s parents.  When that is all you know, you just kind of naturally assume that is what you will do also – when you’ve lived a good, clean, healthy life.  That would give me another20+ years!  Can you imagine the things I could accomplish if had another 20 years?!?!?!  Wow! Well, I’d probably not be productiveall those 20 years, but just thinking that I had those would be amazing. But I don’t.  Never in a million years did I think that my life would end like this.  That I would get an incurable cancer – a rare, aggressive cancer – right in the prime of my retirement years.  I asked myself this morning, “Do I feel cheated?”  Well, yes, I feel cheated!!  


Look at all the things I’ll miss:

My oldest grandchild just turned 17.  I will miss getting to see him as a handsome groom, waiting for his bride-to-be to walk down the aisle.

I’ll miss getting to hold my first great grandchild. And all the great grandchildren after that.  And you know how much I love babies!!

I’ll miss spending time with my kids when they come home.

I’ll miss the celebration of holidays – fixing the traditional meals that I’ve fixed for years.  (I already miss being able to do that now.  I hate the changing times of not being able to do as I did in years past.)

I’ll miss getting to travel to see relatives and friends that I miss so much now.

I’ll miss the times of just sitting in my house with Guy – doing nothing in particular. And riding to Hutch, McPherson, Lyons – and listening to Audible books together.  And having our evening Bible studies together.

I’ll miss being able to play my keyboard in church.  I’ll miss my church and all my dear friends there.

I’ll miss being able to create quilts and wall hangings and baby quilts for those great grands – going to quilt guild meetings and feeling the urge to run out and buy fabric to make that quilt I fell in love with, being able to just sit among all my fabrics, patterns and books and plan my next project.

I’ll miss being able to travel to Colorado and see the mountains again, and most of all being able to see Jeannine’s new house.

I’ll miss my grandkids and being able to hear all about what they are doing and what is important to them.  I miss nowbeing able to go to Dylan and Chris’ soccer games.

I’ll miss my dear little Annie and being able to take walks with her and have her sit on my lap in the evenings as she cleans her feet and face and then falls asleep until time to get into her bed. It grieves me to think of her sitting by the door day after day, waiting for me to come home as she did when I spent a week in the hospital last January.

But then I guess there are a few things I won’t miss:

CANCER – this EVIL thing that has stolen so much of my life!  This EVIL thing that has distorted my face, messed up my vision, caused pain and stress, captured so much of my time and thoughts, taken my hair, and turned my whole .  life .  upside  . down. 

I won’t miss cold, windy weather.

I won’t miss doing laundry and folding clothes.

I won’t miss trying to figure out what to fix for lunch and supper. Well….Guy actually does most of that anymore, but I feel guilty not being able to do that, even though I don’t like doing it.  I never did really like to cook.  If I had ever won the lottery or Publisher’s Clearing House, I’d immediately have hired a cook and house keeper.  But we don’t do lottery – don’t believe in it. However, the other day, Guy jokingly said, “(With your luck of getting this extremely rare cancer,) maybe you should have bought a lottery ticket.”  Let’s see……what could I do with 1.6 BILLION dollars??????  This little church here wouldn’t know what hit them with that kind of tithe!!!

I won’t miss all the political bombardment and evil people wanting to take us away from our constitution and foundational values.

I won’t miss tornados, floods, hurricanes, sirens, and bad news.

I’m quite sure that as I sit here thinking about all this STUFF, if I could just get a tiny glimpse of heaven, all this would simply pale in comparison.  My brother once told me, as his SS class was studying about heaven, “If heaven is so great, why do we work so hard to stay here on earth???”  

Well, lest you think I’m on my last leg, I’m not ready to kick the bucket yet, praise the Lord!!  I just know that I don’t have another 20 years, and that makes me sad…….

But as always…..I’m in His hands……

Friday, October 19, 2018

I guess I better try to catch up.

Since the last post when I got fluids, I’ve actually had really good days.  In fact, some days I feel almost normal!  If my forehead only looked as good as I feel….. *sigh*  I’m starting to get really concerned about my head.  Over the last two weeks, my head has become much worse. Pictures from the last post showed my forehead was red/purple.  It is still reddish purple, but had lots of lumps and bumps with quite a protrusion just the left of midline.  And the two lesions farther up on top of my head have not healed any that I can tell. For about a week now, if I lean down to pick up something off the floor or to pet Annie, when I stand up, my forehead burns like fire for about 60 seconds.  My other area of great concern is around my eyes.  There are several purple bumps plus just generalized darkened areas.  I’ll include pictures at the end so you can see better than I can describe.  Some days my eye lids are swollen, and some days they aren’t.  Not sure what causes the difference.  My vison, particularly my distance vision, has not been good for a long time – most of these medications do affect eyesight.  That all started mostly just after I got my new (and very expensive) glasses.  For one thing, the bridge of my nose seems to be larger, and my glasses cannot fit up close enough to my eyes.  I had them adjusted once, but they didn’t seem to think they could be adjuster further. My vision just varies throughout the day and from day to day.  It generally gets worse as the day progresses.  Thankfully, I can still see well enough to do my sewing, particularly applique. I just have to have good lighting.

My cheek is not progressing quite as quickly as my forehead, but I can feel that the area has thickened considerably.

My head is starting to become somewhat uncomfortable from time to time. Some days it may not hurt at all, and then some days I might have to take a Tylenol during the day and an Aleve at night.  The other day, I forgot and was bent over looking for a book on the lower shelf of this little stand.  When I stood up, it burned terribly, and just after I sat down, I felt something wet pour down my face.  I grabbed a tissue, and blood poured from the larger of the two lesions.  After it stopped, it was flatter – I guess the pressure was relieved.  It has not bled since.

The side effects that I spoke of in the last blog post have pretty much gone away except the itching, and it is not as bad as it was.  I’m still weaning of that Cymbalta – down to 6 beads in each capsule.  One of the side effects of coming off that med is itching, so that may be contributing to the itching.  This IBrance does cause neuropathy.  I’ve had neuropathy of my feet since the very 1st IV chemo, making my feet numb from the ball of my foot through my toes.  I can tell that the IBrance is making my feet a little worse.  Guy has neuropathy from his diabetes, but, in addition to his numbness, he has burning and tingling – especially at night.  I, thankfully, have just had the numbness. The man who owns the grocery store recommended tart cherry concentrate.  Guy takes two tablespoons in juice each evening.  He’s been doing this for a week, and he says that has stopped the burning and tingling.  I’m going to try it to see if it makes any difference in my numbness.  

I have been sending in pictures weekly to Dr. Powers.  He has me scheduled for my next CT scan Nov. 7. That should tell me a lot – whether this IBrance has been helping my lungs.  I don’t have any “lung symptoms” that I’m aware of, and my side/rib does not bother me.  I’m really afraid that it has stopped working on my head, so I don’t know what the future holds there.  I have an appointment with Dr. Page, in McPherson prior to seeing Dr. Powers.  I’m going to ask Dr. Page what he thinks the next step should be.  I’m wondering if he or his group would suggest anything different from Dr. Powers, because I’m afraid that Dr. Powers has no more tricks in his bag.  He told me if this particular medication did not work that I would have “weeks to months” left.  I just have a hard time believing that would be going to go down hill so fast since I’ve been feeling so good for the last month.  I continue to walk my 4 blocks without difficulty, I don’t get as tired as I used to, and I’m doing a lot of sewing now.   

One of the things I’ve been working on is a jelly roll rug.  

A jelly roll is a 2 ½ inch x 42” strip and each strip comes from a line of fabrics.  You get a sample of the whole line.  It usually includes 40-42 strips.  I have several jelly rolls that I need to do something with, and this was a fun project I finished today. (Did you get that???  I *finished* something!!!)

I’ve also been working on these hand applique squares of flowers. I have them all appliqued except 6 of them.  Those are coming along pretty quickly, so I hope that is one that I’ll be able to get completed.  Here’s a picture of the pattern.

Oct. 9th, I was the speaker at the Lyons United Methodist Women’s morning meeting, and I told my story, and then showed my quilts.  It was during our heavy rain days, but two ladies came to my house and loaded and unloaded the quilts for me.  I had a great time, and the ladies were very responsive.  I got lots of great feedback from the meeting. These two ladies helped me show the quilts, folded them up and loaded them back into the car (still in the rain!), and drove me home.  I felt great the rest of the day.  It didn’t really tire me out.  Then this past Wednesday, I repeated the program at the local Methodist church here in town in the evening. The pictures below are from the latter meeting. 
This was for Mom and Dad's 65th wedding anniversary. (They were married 73 years.) 

This was Maya's baby quilt.  Jeannine found a picture; I blew the pictures up on my printer and appliquéd the figures on these blocks. (and made curtains and bumper pad to match)
(I look pretty decent with my wig on!  😀 Keep that in mind when you scroll down to the pictures at the end. 😀 )

Once again, I had a great time – a nice size group of ladies that were very responsive. One of the ladies that came was the one we bought our house from and her mother who does beautiful quilting on a long arm machine.  It was a great evening.  One of the ladies had tears in her eyes when she thanked me for coming. 

I love speaking at these meetings because it gives me opportunity to tell my story and give my testimony.  I found out that all three churches in town have me on their constant prayer list. What a blessing it was to find that out!   Of course, I love to share my quilts and talk about my hobby, but I love giving God the glory for his blessings even more!

Jeannine and the girls are all moved into her new home.  She is so happy there, and the girls love it and feel secure there.  I’m so happy for her.

SO, once again, I just wish my head and face looked as good as I feel. I would almost think I was beating this thing.  But then reality sets in again....  UGH!

Here’s my prayer requests for now:
Pray this medication starts working on my head.
Pray that I do not worry about the future, but keep complete trust in God’s plan for me.
            These are the two main things!
Pray the pain remains at bay.
Pray I can stay hydrated.
I’m on my off-the-medication week, so pray that as I start back on it Saturday, the side effects will remain minimal.
Pray that I will continue to feel good, so I can remain active.
Pray that this does not continue to spread around my eyes.  I would hate to think I might lose my eyesight!
Pray for Guy.  He has felt “punk” for a couple weeks, but is starting to feel better.  And just pray for him as he helps me keep going.  I know this is all hard on him, but he is such a trooper. 

Remember to scroll down for pictures if you wish.

And as always……..I’m in His hands……

(I'm still growing hair on the right side of my head.) My right eye usually is swollen because I sleep on my left side. (gravity, I guess)