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 1^stIV 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 1^st 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 1^st 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……

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.

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!!  

 OUCH!

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……

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 1^st 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. 9^th, 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)