Roller Coaster of Feelings Today….

For the last couple of days, my eye lids have been terribly swollen.  Not just a little – I mean a lot!  Making it difficult to read anything.  I’ve put ice on them, but no change.  This morning I called my pharmacy in KC to ask if this was a side effect of Nexavar – the chemo pill I’m taking.  The pharmacist said she would check.  She came back rather quickly and said she would put me on hold for a bit.  The next person to answer was Dr. Powers.  I was kind of shocked to hear his voice!  He told me that it was not a side effect of the medication.  It was the progression of the cancer.  I told him that the darkening area for the first time had spread from always being on the left side to beginning on the right side – just faintly above my right eyebrow.  He said I really had not been on this med long enough for it to do much, and he would still see me next week.  He did admit that from the pictures I had sent him a couple days ago, that it certainly looked worse.  He again suggested that I might want to think about hospice.  I again told him I felt good and was gaining strength.  He said that since our last visit, he had received word from the lab that examined my tumor that it showed a marker – and he named  the marker – can’t remember the letters or numbers, but it contained some kind of mutation that was sensitive to some new medication - can’t remember the name of it either, but it was not yet FDA approved, and he couldn’t say whether it would help or not.  I suppose it is kind of like a clinical trial.  I said if the current medication did not work, I was willing to try this new one.  What do I have to lose?  I will be seeing him next Tuesday after an MRI of my head (to see if there is any metastasis to my brain).  They will also check my liver profile to be sure Nexavar has not damaged my liver.

After that conversation, which was more than a bit disturbing, I went downstairs to my quilt room.  I thought it would help take my mind off of things.  But as I went through more of my small project boxes, and looked at what I could begin work on, I got more and more discouraged.  I kept thinking – if this cancer is progressing at the rate it seems to be, there really is no point in my trying to work on anything, because I can’t finish anything anyway.  I put all the containers on the shelf, and sat down, wondering what will happen to all my projects, my machines, fabric, my quilt tops not yet quilted (and there are many!).  I wondered if I would be able to speak about quilting and show my quilts next month at our ladies’ fellowship meeting.  Will I make it to spend the summer with Jeannine and the girls when they come?  Will I make it to June 7 to celebrate our 50^th wedding anniversary?  Oh, God, PLEASE let me make it to our anniversary!!!

So, I cut my stay in the quilt room short.  It was just a little too close of a reminder of what I will not be able to do.

I fixed an ice pack and lay back in my recliner to see if it would help my eyes.  I dosed a bit before lunch.  I couldn’t see any real difference when I got up.

I decided to look on the internet some more at side effects of Nexavar, and I did find that swollen eyes was indeed a side effect.  I decided to call the nurse in the infusion center at McPherson.  I knew Dr. Page would be in.  His office and exam rooms are all in the same area as the infusion center.  I told her about my swollen eyes.  She conferred with Dr. Page, and he said that was a side effect of Nexabar.  He said to use Refresh eye drops, and if that didn’t help to get back with them.  It was too late in the day to get back with them, but at least he didn’t say it was just my cancer progressing!!  It was a side effect of Nexavar!

I feel like someone is just brushing me off – and I don’t think it is Dr. Page!  Anyway, that helped to once again give me hope.  I know that it is spreading to the other side of my face, and the left side is getting quite a bit darker – almost black on some areas of my forehead.  But at least I don’t feel like I’m going to die tomorrow!

I do feel like unless God divinely intervenes, I will not beat this in the end.  When that end is, I do not know.  I do still believe in divine healing, and I continue to pray for it, if it is God’s will, and I pray desperately that it is.

Thankful tonight for:

No nausea

Good appetite

Steak that Guy grilled tonight

Workers putting in a sidewalk in front of our house

I’m not blind – I can see, even though it is with some difficulty

I still have hope for more good quality of life.

I cannot begin to thank all my dear family and friends that continue to pray for me and send such kind and encouraging words.  I’m just overwhelmed by the love and concern you show.  There will be many stars in your crowns!  And just think – if you are a believer in Jesus, and your sins are forgiven, we will spend an ETERNITY walking those golden streets together!!!!  Woo hoo!!!

As always…….I’m in His hands……

More lab work and another doctor’s appointment

This has been a better week for several reasons.  For one, I’ve felt better – felt stronger and able to be up and about more.  Still cannot get out around crowds, and if I have to, I wear a mask.  They say the peak of the flu season has not yet arrived.  ARGH!!  It’s just terrible out there!  Thankfully, I love my home – kind of a home-body anyway these days.

I have certainly not called hospice!

The highlight of my week was a visit from my cousin, Cynthia Ulrich Tobias.  She lives near Seattle.  For those of you who do not know her, she is a speaker and an author of many books.  Many have read her first book, The Way They Learn.  You can view her website here http://cynthiatobias.com.  Here is a little except from her website.

For over 30 years, Cynthia Ulrich Tobias has been sharing her professional insight and practical tips for educating the audience to understand the unique needs presented by all kinds of learning styles and finding success for even the most difficult or strong-willed children and adults.

Cynthia speaks to parents, educators, law enforcement agencies, and leaders in our communities who deal with diverse and challenging individuals—and helps them learn the wisdom, power, and life-changing benefits of turning conflict into cooperation.

She has a very busy schedule, but she had a 3-day window, so she flew into Wichita and rented a car.  I felt so honored to have her take this time to come see me.  I used to go help her with her book table whenever she would be speaking near me, but her husband takes care of all that now.  I just love to hear her speak.  She is so good and so witty!  Her website has several videos of her speaking.

She is the daughter of a Nazarene pastor.  Her mom was my dad’s younger sister.  Her mom died a little over a year ago, and her dad just died recently.  Cindy has a younger sister, and they all lived near one another.  Her parents and my parents were always very close.  I’m sure they are all enjoying their reunions in heaven.

Anyway, we had such a great time of catching up and just being together.  Her visit really lifted my spirits.  She feels more like a sister then a cousin. 

Thursday was my lab day.  This was the first lab work since getting out of the hospital, so I was anxious to see the results.  When I left the hospital, my white blood count (WBC) was 3500, hemoglobin 9.4 and platelets 145.  Thurday’s results were WBC 7,400, Hgb 11.4, and platelets 294.  Woo hoo!!  That’s why I’ve been feeling so much better.  (Normals are WBC 4,000-11,000, Hgb 12-15, and platelets 150-450.)

Friday, I had an appointment to see Dr. Page, the local oncologist, in McPherson.  I was really looking forward to seeing his take on this whole situation since being in KC and seeing Dr. Powers.  You’ll recall that Dr. Powers told me to start thinking about hospice, and I refused to think about that now.  Dr. Page had just received the CT report and knew about the two lung nodules that had increased in size and the tumor in my rib.  He asked what Dr. Powers thought about all this.  I told him that I was kind of upset and uncomfortable with Dr. Power’s suggestion of hospice, and I had to ask about Avastin or pills to take.  I told Dr. Page that I felt like Dr. Powers had given up on me.  He agreed that I should stop the Adriamycin since it was apparently not helping and was just too toxic for me.  His feelings were that the pill, Nexavar, was an appropriate thing to try.  I only started it last Wednesday, so it’s too soon to know if there will be any positive results.  The spots on my face have enlarged over the last two weeks.  So far, I have not had many side effects from the pill.  I told Dr. Page that I still had hope, and as long as there was something I could take, I would take it.  When all help runs out, then I’ll think about hospice.  He felt as long as my quality of life was good, there was no need to think about hospice.  He did mention along the way that this was not curable.  I try not to think about that.  I have a big God and many, many prayer warriors.  Only God knows and is in control of my situation.  He numbers my days, not doctors. 

I have not stuck my head in the sand, or am I in total denial about this cancer, but at the same time, I have to make the most of what I have and live my life to the fullest.  None of us are going to live forever.  There are a lot worse ways of dying than having cancer and taking advantage of hospice to ease your going.  I could be hit by a Mac-truck out on the highway, and I think that would be rather painful!!

I just always assumed that I would probably live into my 90s since both of my parents did.  That frustrates me a bit, because I have a lot of things that I would like to do yet, and I should have about another 20 years to do them!  (Feel cheated a bit perhaps….) But I know that none of us are guaranteed tomorrow.  Being incurable, it will take a Divine healing for me to live into my 90s.  So far, that has not happened.  There is healing going on all the time, or my lab counts would not have been good – just not the healing from the cancer.  Why?  I don’t know, and don’t understand.  Some people win the lottery – some people get rare cancers.  Some people are stuck by lightening – some people get rare cancers.  I don’t know what the percentage is on my cancer – I will not go on the internet to look up my cancer.  I don’t want to know the details, because it would take away my hope.  Given the choice, would any of you want to know the day/month you are going to die?  I don’t think so, so I don’t want to know my life expectancy.  I just want to live every day to the fullest – as I feel like it.  The problem is, some days, I just don’t feel like it. 

One of the things that nags at me, is that I have a whole room full of fabric and two machines (one for which is very expensive) sitting there waiting for me to work on them.  I want to, but can’t seem to get motivated to begin.  With all the things I want to do, I look at all the projects and just get overwhelmed, so I don’t work on at all.  Is that crazy?  I’m I crazy?  I hope not.  I suspect it’s just the nature of the beast.  J

Looking forward to going to church tomorrow – with mask, of course.  Just counting my blessings this evening for a good week.

As always…..I’m in His Hands…..

Latest Scan Results and Doctor Visit

A couple of weeks ago, I knew this latest scan and visit with Dr. Powers was one I really dreaded.  I knew, because of the last visit that gave me bad news, this one would be a very important scan that would tell a lot – either I was getting better, or I was continuing to get worse.  I prayed so much for peace about it – that I would not stress out about it.  And God did give me that peace.  I stopped thinking and worrying about it.  I felt like whatever it showed, I could handle it.

The scan was at 10:30, and then we got breakfast because I could not eat 4 hours prior to the scan.  Then we met with Dr. Powers at 1:00.  I never can tell what he is thinking when he first comes in because he is always warm and smiling.  He always asks how I’m doing.  He knew about my hospitalization.  I told him I was feeling good – a lot stronger after getting out of the hospital.  He showed me on the computer the results/pictures of the scan.  The 3 nodules in the right lung were still there.  One was 2-3 mm and is now 7 mm.  One is 4 mm and unchanged from the last scan in Nov. (but was not there in Sept).  One in the lower right lobe was 5 mm and is now 7 mm.  I think this is the one that had “popped” and pulled away just a bit from the rib cage causing a small pneumothorax (air pocket between the lung and rib cage).  It is small enough that a chest tube is not necessary.  There is a 4mm nodule in the left middle lobe that remains unchanged from last scan.

You may remember me talking about 2-3 months ago about turning over in bed one night and feeling a definite POP in my left side, just above my waist, causing a great deal of pain which lasted several weeks.  I went to my PCP in Hutch, and he did a CT scan which showed nothing.  Shortly after that, my regular appointment with Dr. Powers was due in Nov.  That CT scan showed nothing in that area.  THIS visit and scan, however, did show “within the posterior left 10^th rib, there has been development of a local destructive and mildly expansile lesion.”  In other words, there is a small tumor in that rib now which indicates metastasis.  The strange thing is that it has not hurt for about 2 weeks.  But, nevertheless, this angiosarcoma is still on the move.  L

Dr. Powers said that the purple on my face is still active angiosarcoma.

The bottom line is that the Ariamycin that I’ve had 3 doses of, is not working.  All it has done is make me sick, so he said he is not giving me anymore of that or the Neulasta. 

Then he dropped the bomb……He said that perhaps I might want to consider hospice care for the future.  Hospice……that is not a word I wanted to hear.  I’m feeling good, and I’m not willing yet to give up the fight.  I asked him about the Avastin that he has often mentioned to me.  I knew that was not a particularly good option because the last surgical area on the back of my head has still not healed.  That’s the reason he has not used it before.  It halts the healing of anything that is not healed.  Avastin is given IV every 3 weeks.  If you have some major side effect, you can’t take it back.  There are 2 different pills that act similar to Avastin, but if you have a bad side effect, you can just stop the pills.  So it was decided that I would go that route and give this a try.  These particular medications go to the cancer cells and cut off their blood supply, so they cannot reproduce, acting completely differently from regular chemo.  I will be taking Nexavar (sorafenib).  The pharmacist went over this in GREAT detail, making sure no one but myself would handle it – of it gets onto my countertop, I must clean the spot with bleach!  I’ll be taking 2 pills a day, 12 hours apart, on an empty stomach – 1 hour before food or two hours after food.  She went over the side effects very carefully, but said, of course, not everyone gets them all.  She said it might take a week to 10 days to get it approved through my insurance – they typically have to jump through lots of hoops.  It is EXTREMELY expensive!!  On the way home, she called me to tell me they already got it approved, and they would put it in the mail right away.

I’m not sure how much faith Dr. Powers has that this will work, but I’ve said all along that as long as there was something I could do, I would do it.  When we run out of options, then I’ll think about hospice, but not until.  I still have hope.  I HAVE to still have hope! 

Wednesday, I went to see Dr. Przylecki, my plastic surgeon.  I just wanted him to look at this place on the back of my head and tell me that it was OK – that it was healing and not infected.  He seemed positive about it – that it was healing.  I told him about the medication I was going to be taking and how it stops healing.  He told me it was more important to take the medication, and if it bothered this spot, we would just deal with that then.  So that made me feel better.

From there, we went back to Mark’s, went out with them for lunch, and then came home.  We had considered staying the rest of the day.  They kind of wanted us to go to Chris’ basketball game in the afternoon, but we thought it best to come on home and not get me out in crowds.  It is a good thing we did because I’m not sure I could have taken the stress of the next event.

Chris (8th grade) was warming up before his game, went up for a layup, and the next team mate did not wait his turn until Chris got out of the way, and when Chris came down, the other boy’s elbow came crashing into Crhis’ mouth.  It broke off the bone above his upper front teeth, affecting three of his front teeth.  The only good thing is that he has braces that held the teeth in the gum.  He was taken to this orthodontist who put the bone back in place and hard-wired it all back together.  This morning I asked how he was doing.  Mark had him at Children’s Mercy Hospital being checked out for a concussion, since he couldn’t remember his home room teacher’s name or his friend’s name.  He was diagnosed with a mild concussion and is to rest and cannot play any sports for the rest of the week.  Bless his heart!!  He is such an athlete, and he puts his ALL into whatever sport he is playing.  This is his 3rd broken bone, with the other two due to soccer.  A prayer for Chris to heal properly and have comfort would be appreciated. 

This wasn’t enough drama at Mark’s house this week.  You’ll recall that he has these two beautiful golden retrievers that are 10 years old.  Last weekend they were at our house while Mark and Chris went to a soccer tournament in Dallas.  The one, Heidi, has been having issues for some time with her hips.  She cannot come up the steps by herself.  The vet x-rayed her a few weeks ago, and said her hip joints were just gone. By the time we kept her last weekend, she had all but quit eating, and was terribly skinny.  Mark said he was having to think about having to have her put to sleep.  By the time we got to OP Monday, she had quit eating altogether.  That usually means a dog is in pain.  She just wanted to lie on her bed.  She would get up now and then to have you pet her.  Wednesday morning, they had an appointment with the vet to see what he thought and if she should be put down.  I thought sure he would have her put to sleep then, but he brought her back, saying that the vet had done some x-rays and blood work.  Later in the day, the vet called to say she had a tumor on her bladder, and she was in renal failure.  So early this morning, among all else that was going on, they had to have her put to sleep.  Bless his heart!  I know that was terribly rough on him.  Praying for him. 

Chris will be with his mom this weekend, so Mark and Amy are coming here and to Hutch to celebrate Amy’s birthday.  He said he just had to get away, to rest and clear his mind. 

Although this has been a rough week for our family, I stopped to think of what I have to be thankful for.  Here are a few: 1) The liver was clear.  The spot that had been ablated is shrinking in size. 2) My pancreas and spleen were clear. 3) There were no NEW spots in my lungs. 4) Guy, in the midst of my crushing feelings after hearing the word “hospice” took my hand and said, “There is still hope.” 5) After going back to Mark’s, Amy was there to hold me and just let me cry.  6) In spite of the bad news, I still feel good.  The spot on my head has pretty much stopped hurting, and I’m in no other pain. I feel pretty strong. 7) Though all this, I’m still infection free. 8) I’ve heard from SOOOO many family and friends that are praying for me and cheering me on.  THANK YOU dear ones!!  9) My pastor came by for a visit this morning and encouraged me, read Scripture, and prayed with me. 10) My devotion yesterday was again spot-on. 

11) GOD IS NOT FINISHED WITH ME YET.  Although I do not understand why I’m not healed, I know there is still a purpose for me as long as I’m here.  I try not to question His ways or plan for me, but I’m human, and sometimes I just do.  Sometimes I think I could be so much more effective for Him, if I were just miraculously healed.  What a testimony I could have!!  I would shout it from the rooftops!! However, as I pray each day for that healing, I do not get a clear feeling/assurance that it will happen this side of heaven.  But I don’t give up praying, and I don’t give up hoping.  I just can’t! I . just . can’t!! 

As always……I remain in His hands….