Tuesday, November 29, 2016

Some GREAT news today and some not-so-good news.


I met with Dr. Powers, the medical oncologist today to get the results of the PET scan.  The GREAT news is the PET scan was fine – “no hypermetabolic activity” – in other words, so signs of cancer anywhere in my body!!  Praise the Lord for that!!!!  I gotta tell you….I was scared today…..as hard as I tried not to be, I was scared.  But once again, sooooo many prayers were answered, and I cannot thank you enough!! So tomorrow, when I go into the hospital to have Dr. Mammen clean up the margins of that last biopsy area, he will not have to do extensive surgery.  It should end up being done on an outpatient basis, letting me go home later in the day.  I have to be at the hospital at 7:45 in the morning for that surgery.

However, the not-so-good-news is as I anticipated it would be.  Dr. Powers DOES recommend chemotherapy.  Since there seems to be no rhyme or reason for this to have occurred, and because that 3rd one showed up so quickly after removing the 1st two, he feels like I should take the chemo as a precautionary measure.  AND they can’t keep cutting on my head!  Out of all the sarcomas, Dr. Powers said that angiosarcomas are sensitive to one of the chemo drugs that is often used for other cancers – not a new drug, but a tried and true one. For my nurse friends, the drug is paclitaxel.

Dr. Powers wants to wait to start the chemo until I’m healed from all the surgeries.  My post op check back from tomorrow’s surgery is Dec. 15, so that is when I’ll also meet back with Dr. Powers.  At that time, he’ll talk more about the plan.  The general plan, as he outlined it, will be to take a rather low dose, by IV over a 90-minute period, once a week for three weeks.  Then I’ll take a week off.  Then I’ll repeat that – once a week for 3 weeks and off a week.  That pattern will continue for 4 to 6 months.  Yikes, that seems like a long time!  We talked about possible side effects.  Two he mentioned is fatigue and changes in nails – may turn them dark.  I may or may not lose my hair.  But then he said, “If Dr. Mammen keeps cutting on your head, you aren’t going to have any hair anyway!”  :)  That is true, since half of it is gone now anyway.  He said if I did lose it, it might come in curly!  :)  (I guess that was supposed to be a benefit)  I shouldn’t worry about my hair – the topography of my head has changed forever.  After the doctor left the room, the nurse said another common side effect is neuropathy – tingling and numbing of my fingers, and possibly feet.  OH, I hope I don’t get that!!  She said if I noticed that too much to notify them, and they might cut the dosage back.  I’m immediately thinking……. piano playing…..quilting……just buttoning my shirts.  I already have trouble with my feet being very tender on the bottom.  My mom had neuropathy of her feet – no particular cause for her, but she said it felt like she was walking on two wooden blocks.  I was always afraid that I might inherit that from her! 

Well, I know that I should not run down all those rabbit trails, but I had to ask about the side effects.  Some are temporary, but some can be permanent.  I had really hoped that I would not have to have chemo, but I don’t want my head cut on anymore, either!! I’m just praying for minimal side effects……..God has been so good to me so far!

Another good thing is that there are many Kansas Cancer Treatment Centers all across Kansas, and there are several of them close to Little River – McPherson (20 minutes), Hutchinson (30 minutes), Salina, Wichita (60 minutes).  Dr. Powers said I could get my chemo treatments at one of those and not have to travel to KC each time.  He and Dr. Mammen will still be guiding my therapy and care, but he will be contacting one of those centers to set it up.  I told the nurse that “expertise in administration” is more important to me than “closeness” to me.  She said, “Oh, yes, he will never send you to a place he is not completely comfortable with!!”  So we may get home before Christmas after all.  I will be coming back to KC to see Mammen and Powers every 3-4 months for CT scans.  Dr. Powers indicated I’d come back sooner than that to start with.  I’ll need to be followed closely with blood work to be sure I don’t get anemic since chemo effects the bone marrow and its production.

So as you can see, this is all going to go on for a while.  I have to remember to take one step at a time.  I’m going to try to concentrate for now on the good PET scan news and getting through tomorrow’s surgery.

As always, I thank all of you for your prayers and support.  I surely do feel it!!

As always, I’m in his hands….. 


Sunday, November 27, 2016

A little too quiet here today......


Jeannine and her family arrived last Wednesday evening.  It was so good to see them!

Thanksgiving Day, the men did most of the work in the kitchen.  The meal we had ordered from Whole Foods turned out to be really good.  It all tasted like it was home-cooked.  It did take a while to heat it all up with one oven in the house, but the guys did a good job putting it all together.  I did make my jello/cranberry/apple/grape salad Tuesday night.  It simply would not have been Thanksgiving without that traditional dish.  Jeannine made a pumpkin pie for Sofia with her almond/quinoa flour and made gravy that she could have. (She can have NO wheat, rice, oats, or yeast.)  It was a meal enjoyed by all then, complete with pumpkins pie and real whipped cream!!


 Tuesday evening, I started coming down with a cold.  Haven’t had one of those in a long time.  The last time I felt one coming on, I took Zicam and Emergen-C and warded it off in a day.  I took lots of those two things this time, but it didn’t work as well.  I guess my immune system is a little stressed right now.  So Thanksgiving Day and the next, I felt pretty rough.  I hated that so much with the whole family here.

Friday, Sula wanted to go Black Friday shopping.  And she wanted to take the kids with her.  Dylan had a bit of a sore throat, so he stayed in.



 By yesterday, I started to feel a little better.  We all went to Sheel’s so the girls could ride the ferris wheel.  It is a great sporting goods store here, with a full-size ferris wheel right in the middle.  



It also has this fabulous aquarium!  


They all had a great time there.  Dylan slipped back to the café where they have this great fudge shop.  He said, “I’ve brought along a little money.”   He bought the 6-pack with a variety of flavors.  I think the boys have kept that whole box in their room overnight.  I’ll bet there is not a piece left!  😉 Jeannine also bought a six-pack variety box.  This family does love its fudge!!

We took two cars there because I could not stay long.  The home health nurse was coming to change my dressings.  (Plus, the Ironbowl was set to start at 2:30!)  My arm and leg continue to heal nicely.  I suspect it won’t be long before I’ll be able to remove the bandage from my arm.  When the bandage is off, it feels really weird – like there is an Ace wrap still on my arm.  The skin there is very tight.  I’m sure that area will never feel “normal” again.  I hope I’ll be able to bend my wrist adequately again and, at some point, be able to play the piano.  Right now, the problem seems to be with my thumb.  For some reason, it is VERY painful yesterday and today whenever I try to move it.  It feels like a terrible case of arthritis in the joint.  I don’t have my anti-inflammatory prescription cream here in KC.  I did bring my essential oils, so I’m going to try a combination of those and see if that helps some.  I certainly don’t like to put up with those stabbing pains.

Today, Sunday, I do feel a lot better with this cold.  I fixed bacon and eggs for breakfast for everyone.  It’s the first day I’ve felt like doing anything in the kitchen.  I think I’m over the hump with it and on the mend.  I surely hope so!  I HAVE to be well enough to have that surgery on Wednesday.  I hope that tomorrow, the PET scan will come off as planned. 

Everything seems to rest on that scan.  I will be very anxious to meet this new oncologist, Dr. Powers, to get the results and find out what his treatment recommendation is.  I’m sure the results will also determine how much Dr. Mammen takes of this last biopsied area.  If that surgery is just an out-patient surgery and a minimal amount is taken, we would really like to go home to Little River for a few days.  I know I have to be back for a post op check Dec. 15, but we really need to go home to take care of a few things.  When we left there Oct. 12, we didn’t come prepared to stay here for 2 months or more.  Thankfully we did bring some long-sleeved shirts and a coat, and thankfully the fall has been really mild, but if we have to stay here well into Dec., we are going to need some winter clothing.

Between Thanksgiving Day, Friday, and yesterday, we certainly got a good dose of football.  I do love football – especially college football.  I’m not real big on pro football any more, but I will watch it if it is on.  We wait all winter, spring and summer for the season to start, and we turn around twice, and it’s over.  L  We are still big Alabama football fans, and probably always will be!  Just glad they are doing well again this year.  RTR!!!!

Lots of picture taking before Jeannine left.







The weather here today is very cool, cloudy, breezy and drizzly.  Kind of matches our feelings as we told our kids and granddaughters goodbye.  


We are just so thankful that we are all close enough together that we
 can spend holidays together. 

But now it is way too quiet here……

Please remember me in your prayers as I go for this PET scan Monday.  I just PRAY the news is good from that!!!   Because this 3rd spot occurred so quickly after the removal of the 1st two, I’m anticipating chemotherapy to be recommended.  I had hoped it would not be necessary, but if that is the recommendation, I will not hesitate to follow through with it.  I know I should not get the cart before the horse, but I’m trying to face reality and not be blind-sided if it is recommended.

I hope all of you had a wonderful Thanksgiving.  I know there are some who struggle with holidays because of missing family members, and for you I am praying.  And I always thank you SO VERY much for your prayers!!  They mean more than I can possibly express!  I love y’all.


As always, I’m in His hands…..

Wednesday, November 23, 2016

Update from today's doctor visit.....

Well, I think I kind of got some good news today.  I saw my cancer surgeon this afternoon.  He looked at this latest area, and felt it looked good, but he does want to schedule surgery to remove a good margin around it.  The good part of the news is that he thinks he can take what he needs, stitch the edges together, and not have to do a skin graft.  He doesn’t guarantee that no graft will be needed.  A lot is going to depend on what the PET scan on Monday shows and Dr. Power’s recommendation on Tuesday.  If the PET scan shows no hot spots, the surgery will be minimal, and I’ll go home the same day.  If it looks like he needs to take more, the plastic surgeon has already been told to be on standby.  There was a surgery opening on the 30th, a week from today, so I will not have to wait a long time.  Next Tuesday, I’ll get the call as to when to come in on Wednesday.  As we left, we scheduled the post op check up for that surgery to be Dec. 15.  Those office visits just keep getting scheduled further and further out.  Beginning to wonder if we’ll get home for Christmas…..

I was supposed to see the plastic surgeon for the 2 week check up on the 30th.  Now I’ll have to reschedule that.  I figured he would take the stitches out of the grafted area of my arm.  I can really feel those stitches pulling as that heals.

We are waiting now for Jeannine and her family to arrive.  Mark picked up the food for our Thanksgiving meal from Whole Foods this afternoon.  It is in two big boxes out on the deck.  Thankfully it is cold enough that we can just store it there IF we feel like it is secured enough from neighborhood varmints.  His yard is not fenced in.  I don’t think we can get it all into the refrigerator.  I have not really seen any dogs in the neighborhood that are lose – other than ours when they go out.  I would hate to have spent all that money only to go out in the morning and see it scattered all over the backyard!!

Here’s wishing each and every one of you a very Happy Thanksgiving.  Be sure to count all your blessings; they are many even in the midst of your circumstances.  God bless each of you richly!!


As always, I’m in His hands…..