Our Christmas Miracle

Christmas Eve was one of the most memorable events that I will never forget.  It was like it happened to somebody else.  Not Kim and I. 

Before Christmas Eve, we got a few Christmas cards in the mail, anonymously with money in them.  It was crazy and we didn't know why people were doing it. Then Christmas Eve day, someone brought by a huge jar filled with change and bills inside on top.  I brought it in the house and just sat at the table and bawled my eyes out.  Why were people picking us to be so kind to?  Why were they singling us out of everyone who needed help?  When Kim got home, he went through the numbness of it all like I had.  We were so humbled.

Then one of the girls who used to be in my young women class, showed up at my house with a card.  She told me that she told her mom that she wanted the money they would spend for her for Christmas and she gave it to me in her card.  Another tear jerker!!  A teenager giving up Christmas for me??? Why me???

I knew our kids had been up to something.  And we were about to find out.  After all of our Christmas Eve party was over and gifts opened, all of our kids and spouses got together to give us one last gift, and all these cameras came out.  I looked from one to another and they were all standing in a row pointed phones our way.  They sent us on a treasure hunt, and we came back with a vase of flowers and a wrapped box.  The box was opened and there was  stacks of $20 bills that seemed endless.  Kim asked them if they robbed a bank. We both were so touched.  I was again a bawling mess.  The excitement of the kids were so evident and we found out that they had all collectively participated in some way or another together in fund raisers for money for my cancer.  It was the most humbling experience.  That all of this money came from our neighbors, friends, acquaintances, ward members, non- members, county residents, people we didn't know, people our kids know who don't know us, people from literally all over the world!!! Anonymously giving money to us!!! To help with our cancer bills. 

After they gave us the box with the money in it, Emily had made a video with all of the kids and grandkids in it and showed parts of the three projects they did to make money.  It was so touching.  I couldn't believe it.  I still can't believe people did this for us!! It is sooooooo humbling and we have been entrusted with this money for my cancer care.  Wow.

 Just while I have been typing this post, the doorbell rang with another envelope from several families that  are our relatives near by.  (I will wait till Kim gets home from work and let him open it).  This is unbelievable.  Thank you.  Thank you.  Merry Christmas to all of you who participated in this special Christmas for us.  We wish we could hug each person. 

This is the video that our kids had for us to watch.  It was really a tender video to our hearts.  Thanks kids!!!    

Second Radiation Surgery date

Wow.  I didn't know that I hadn't written since the first of the month.  I guess because I haven't felt well that I didn't.

I have "so much" to write.  So many things have happened.

Let's go back a few weeks:  I think I had nausea for three to four weeks post surgery.  No appetite, and very little sounded good to eat.  Silly though, that I always thought tacos sounded good.  We went to Taco Bell or some taco joint " A LOT"!!!  I wonder why.  And fruit always sounds good.

Anyway, I finally got over sickness and tiredness.  No more needed naps or lying down to just rest.  And I started really feeling good!!!! Better than I have felt in quite awhile.

On the 22nd, we went to St. Marks and I had an MRI. (Remind me that I don't like those.  I forgot).  Then we went over to the surgeon who does my radiation down there.  I had a million questions it seemed from all of the things I went through post surgery.  All of them were normal, but I just had bad cases of all side effects, but still normal side effects.

We set another date for the second radiation surgery.  He never got into the left side of my liver to give any radiation.  There are black holes in places he did radiate which means the tumor is dead there.  I found out that "black holes" are good in the tumors.  And I have some.  They haven't had time to shrink yet though.

My second surgery will be January 6th. 

Fainting

I have debated for about a week whether I should put this on my blog.  Then I thought:  This is my journal of my cancer.  It is part of what I am going through.  Put it on the blog.

Last Saturday was our daughters birthday.  We went up to her house to give her a card before she left for the Utes game.  When I got home, I needed to shower.  I got in the shower and kept feeling extremely weak.  So weak that I was too weak to keep my arms up washing my hair.  I had not  a smidge of energy.  I felt faint and so I sat down in the shower.  I called Kim to come in and told him I felt like I was going to faint.  He got in the shower with me to help me back up, and that's all I remember.  I guess I fainted and he caught me.  He was really upset because he didn't know if I was alive or dead. I remember coming to and then instantly throwing up.  After cleaning us both up, Kim took me in to lie down.  It was Saturday, so he called the doctor on call.  Kim told him what had happened and he wanted Kim to take my blood pressure.  It was so low.  The doctor said this was common for having a Y90 surgery.  (That is the name of the surgery I had.) He said that 10-14 after surgery it was common to have post embolization syndrome.  And I was out 10 days exactly.  He said it was the worst part of post surgery.  (Hey, nobody told me about no syndrome!!!)

The doctor said I was dehydrated and if I couldn't get the top blood pressure number to go above 100, I would need to go to the ER and have them give me fluids.  Kim pumped me with fluids.  I have had a struggle keeping it over 100.  It hasn't been easy. For the next 24 hours, I didn't dare go anywhere in case it happened again. That was very frightening to us both. 

Thanksgiving and decorating the tree.

Kim put up the Christmas tree tonight, and I was too nauseous to help for awhile. I finally took some med. so I would feel like helping decorate. (Kim doesn't decorate the tree) .

I am still struggling with my health, but I think I am feeling a little better than I was.  Thanksgiving was very tiring for me, so after dinner I had to go lie down for awhile.  After a half hour, I was able to spend time with the family and be just fine.  Most days I need two times to go lie down and rest.  Mostly I can't sleep but the rest is what I need.  Radiation really zaps your strength and stamina.

I can't wait until this is WAY behind me.  It's a lousy memory so far.

Just throw me over a cliff.

Whining or not, I have not had a good week since surgery.  My stomach is either feeling nausea/sick or I am bloated and it hurts like heck, or constipation,or I have acid reflux to the point of no return.  (If any of you have reflux, you know how painful it is especially when it is out of control and has burned your esophagus all the way down to your stomach and you want to scream.) Then the right leg and liver hurt and ache from the catheter.  It has been a pretty unpleasant week.  I called first thing Monday morning to talk to my doctor about the reflux and I am now on a lot of med. for it.  I don't like all the prescriptions I am taking after this surgery, but the med. for nausea is saving me from sickness and hallelujah for pain meds.  I just am going in a circle from one thing to the next all day long, and not sleeping well makes it all worse. And to think that I have to do this all again?  Just throw me over a cliff before that day.

stop whining TL!

I don't mean to be a whiner 49er, but this surgery is kickin' my trash!!!!! I am not bouncing back like I did in the first one two weeks ago.  But I have to keep telling myself, I was filled with toxic material this time and my body is reacting to getting it out.  I just want it to hurry and let me be.  I want to feel like a normal person again and have energy and feel like getting dressed!  I don't want to be nauseous and feel sick and be in pain .  And I want to be able to sleep good!!! Ahhhhh. I need a good nights rest.  The rest I DIDNT GET AND THOUGHT I WOULD DURING SURGERY!!!  Today I have felt quite down, except for the sweet card I got in the mail and a package of Hugs I got from a neighbor, and a wonderful meal tonight from a dear friend.  Silly pictures from my sons family to make me laugh, and phone calls and texts.  Each was a booster shot for me of love and helped my spirits rise back up.  I have to keep reminding myself, " I Can Do Hard Things".

Second surgery over. I radiate!!! One more to go.

Today is the day after my surgery.  The doctor said it went well.. I hope so.  For the two hours in surgery, I again was kept groggy awake on purpose so I could hold my breath and blow it out when they told me to.  I was not too happy about this.  I was awake last time they inserted the catheter and hated feeling everything and hearing everything.  I really thought I wouldn't have to do it again.  This time was worse.  The nurse could tell when I couldn't stand the pain any more and asked to give me more pain med which I was thankful for.  I got nauseous after surgery for a bit.  I feel like a mag truck ran over me today, the day after.  I go see this doctor a few days before Christmas and have the (hopefully) final surgery December 30.  That's not positive but hopeful.

It has been hard to remember to stay three feet away from Kim because of the radiation.  He keeps forgetting too I think.  He sleeps in the guest room for a few days.  The hospital just called and said today probably would be my worst day and I hope so.

Everybody has been so kind.  Meals, cuddly blankets, phone calls.  It has made me feel good.  Thank you.

November 17th. Toxic day.

November 17th at 6:00 am.  I have my next date.  On this surgery we will blast the tumors with radioactive beads.  Then I will be toxic for 4 days.  I get to ride home in the back seat of the car while Kim drives.  I am going to hate not having companionship with Kim or anyone for fours days.  But I can sure talk on the phone!   Well, Kim doesn't have to " call" me, but he can talk to me across the room.  This doesn't sound fun at all.  It already sounds like I will be sent to the dungeon.  Ahhhh!

First Surgery Down at St. Marks Two more to go.

(Groggy pictures after surgery)

 

What a day. I have so much to tell about it.

 

First and foremost, the surgery mapping was a success.  They didn't have to cut off any blood supply to my liver, which we were told just before the surgery that they may have to do. The two doctors will ponder on the mapping for a couple of days to determine what will happen for the surgery.

 

Today, they went in my groin with a catheter, (which I didn't know would happen on this procedure also).  I was groggy through the whole operation so I could follow commands of: " Take a deep breath.  Let it out and hold your breath and hold very still".  I followed that command about 20 or so times for the next two hours.  In the catheter, they put dye through my veins finding the veins that went into my liver, and not out of my liver.  After the procedure, I had to lie in my bed for 3 hours holding my right leg very straight and not bend it.   I was very glad to get home.  But hearing about my next surgeries...........yes.....more than one more......won't be a walk in the park.

 

My next surgery will be in two weeks.  Not sure which day yet.  They have to order the radiation beads from Australia!  (Seriously?) The radiation beads will be precisely entering into 2 of my tumors in the liver, through the groin in a catheter just like today.   (I guess there are four tumors.  Not 3.) Here is the killer:

 

When I get home.  I have to stay 3 feet away from people for 4 days. Kim and I can't even sleep in the same bed.   I guess I will be lit up like a Christmas tree!!  LOLOLOL  I wont have to put a star on the top of my tree.  Just put me on it!!!! LOLOLOL

 

All silliness aside, the nurse told me as she was wheeling me to the car, that I will need someone with me for 3 days!!! I have no idea why.  And she said, "Give your grand kids loves and kisses before you come to the hospital, because you can't for a few days after."

 

Then a month later, they will do the same procedure again to the other two tumors in the liver.  This doctor was very knowledgeable. He is the only one in the state that used to do this surgery.  Now he has a partner, which I had today.  He came from Huntsman originally, and now is in private practice.

 

So, that is my day.  I haven't needed any pain meds, which I am happy about.  I have to not drive or lift things and take it easy for a few days. 

 

Whew!  One down.  Two to go!

 

Read the post below this.  This is what happened to me on the way to the hospital.   

Thank you mom for being with me! I am glad you remembered that Primary Song.

I know a name.
A glorious name.
Dearer than any other
Listen I'll whisper the name to you.
It is the name of mother

Mother so gentle and kind and true
I love you.
I love you.
Mother so gentle and kind and true.
I ---- Love ---- You!

This morning we had to get up at 5:30 to be to my surgery at St. Marks Hospital in Salt Lake by 7:00.  All morning this song above kept going through my mind---- over and over and over.  I ignored it until finally I took the time to  recall the words and wondered why did this song come into my mind  so early in the morning? We only sing this song on Mother's Day. 

 On the way to the hospital, I figured it out.  My mom planted that song in my mind. I know it!  It was her way to let me know that she was with me today.  I am sure of it.  It brought some tender tears realizing the creative way she let me know she was following me today.  Thanks Mom!

Date set for hospital procedure.

My first procedure will be November 3rd at St. Marks.  I will be there most of the day.  Yay.  Can't wait to get it over.

My Surgical plan. Feelings of Peace

Yesterday I had felt was going to be such a scarey day for me.  I was meeting with two important doctors that would be in my life and Kim had to work.  I was going to have to meet with them alone.  I don't like alone in this situation.  I ended up having my sister and daughter come with me.

The night before these appointments, Kim gave me a blessing of comfort and blessed these new doctors to know what to do for me.  He asked for guardian angels to be with me also.  All of the above happened.  I have never felt so at peace.

The first doctor I visited, couldn't hardly believe my liver cancer.  He had never seen it like this before, (reruns from 2 1/2 years ago listening to doctors talk about my cancer). He said he had three plans.  After explaining them all, I asked him which one he thought would work best for me.  Here is the plan:

It is called radioembolization.  They will go through my groin with a catheter with an exact amount of radioactive beads that will go inside each liver lesion and zap them.  I responded SO PERFECTLY to radiation on those three tumors, that they want to hit these lesions inside the liver with radiation also.  It will take two trips to St. Marks Hospital in Salt Lake.  There is not that bad of side effects I don't think.  Nausea  and some bleeding after the procedure and feeling very tired and lethargic for several weeks.  (Oh yay.  Just in time for the holidays to not have energy.  Oh well, so be it). THATS IT! There was no horrible bomb dropped about scarey side effects.  My sister was with me and we both felt so positive and peaceful about the plan.  It seemed so obvious!  He said it would be a couple of weeks before we start.  It sounded quite intricate.  I am excited to get going.

A few hours later, I met for the first time with my new oncologist.  When he walked into the room, and knew everything about me starting at the on sought of my cancer, I was impressed.  The biggest plus was when I told him about the surgery that the first doctor thought would work for me.  He got a smile and said that he was on board 100%.  That was exactly his thoughts.  Hallelujah!  Both doctors agreed on what should be done.  I felt that peace again and I knew I was being blessed. I felt so happy  and comforted all day long.  It was an exceptional day.  Now I just hope for a good Endoscopy report tomorrow. Then I can relax for a couple of weeks.

A HUGE change in my cancer.

Well, I went to see Dr. Fisher today, my Radiation Oncologist. There was good news, but bad news also.

Good News:  My three tumors have shrunk to the size of raisins.  They are essentially "No More".! The radiation did a number on those babies!!  Yea! Such good news.

Bad News:  Those three tumors (raisins now) have always been outside my liver, which has always been soooooooo unusual.  I have been a puzzling case right from the get go because the cancer was NOT IN my liver.

Well, now it is........................................
And it is very fast growing.........................

Since my last CT scan, where it didn't show any lesions in my liver, it has only been 4-5 months.  Now it shows 3.  One is two inches and the other two are 1 1/2 inches each!!  That is FAST GROWING!  So the tumors are gone but fast growing lesions are in my liver.  Dr. Fisher wanted to call a few oncologists and get their opinions on what course to take with me. 

REMEMBER MY ONCOLOGIST THE FIRST TIME I FOUND OUT I HAD CANCER? (Go back and read the very first of my blog if you don't know about him)  Well get this!!!!!  He hasn't changed any!!! Dr. Fisher called him to get his opinion on what he would do with my currant situation.  This is what he said:

" I would give your patient strong pain medication and call Hospice for her".  SERIOUSLY?  I DON'T EVEN LOOK SICK YET!  HOSPICE?  I am sorry to say this but HE IS A JERK!!!

(Calming down my blood pressure).  Dr. Fisher didn't believe that and said that he felt there was some other things we can do. It is called Intervention Radiation.  A specialty radiation. To try to go inside me and cut off the blood supply to the three lesions in my liver.  I kept getting hugs from the doctor and nurse in his office, so I knew that what he was telling me was NOT what I wanted to hear.

Dr. Fisher said that he was not going to give me a timeline that I have left in my life.  I had already super ceded time lines before and would probably continue to do it again.

Well, for the next hour we discussed different doctors.  I am going to get a new oncologist, as bad as I don't want to.  She still hasn't come back to work, 9 months later from her stroke.  So he got me an appointment with the other oncologist that is in her office.  They have all of my files. 

Then I got an appointment for the surgeon who would zap the lesions in my liver, to have a consultation.  Then I have some thickening from the CT scan in my esophagus.  I have an appointment to have an EGD.  All of these are new doctors and I don't like NEW.  I guess I bite the bullet and buck up.

The day after this appointment, I think I was in despair.  I didn't get dressed.  I laid around all day and was in a dark hole.  I gave myself the day to contemplate my new diagnosis, and get over my sadness.  The next day, and since then I have been fine again.  I needed to mourn a day.  My appointments will take place within 2 days.  They are trying to get me taken care of ASAP.  Crappy Cancer.

I want my mommy!

With all of the pain I have been having in my right side by the tumors, I decided to call and find out when my next CT scan was planned for.  I was told it would be the first part of November.  I told her how I had been feeling and she said that we ought to do it ASAP.  Well, yesterday I had a CT scan.  Something unusual happened this time.  I have had so many CT's,  that it is 'old hat' now for me to go have it.  I always have the same lady do it and her and I have gotten to be friends.  I just love her.  Well, I went in on the bed you lie on and she put the IV in and said she would be back in a couple of minutes.  All of a sudden, I wanted my mom.  I wanted her there with me. I was just like a little child that wanted their mommy.  I didn't want to be alone.  And the tears just leaked out of my eyes down my cheeks and into my hair.  I don't know what came over me.  That hadn't happened before. When she came back in, she saw my tears and asked me if I was ok?  I told her yes.  She handed me a tissue and commented that she hadn't seen me react like that before.  I told her I hadn't.  Then I thought to myself, that because I had seen her so many times doing this, that she was my comfort.  She was my surrogate mother at my CT scan.  (There was no way that I was going to tell her that though). Anyway, my tears streamed down into my hair through the whole scan, and when she came back in, she said that I was going to make her cry.  When I talked to Kim about it, he thought that maybe my mom was there was why I felt like that.  I don't know if she was or not.  It would have been great if she was though.

I will know my results next week when I have my appointment.  Geeze, I hate cancer!

End of Summer. Loving Autumn

Summer is over, and I now am in my favorite time of year.  Autumn!  Ahhh.  I love the smell and sites of Autumn and especially the temperature. 

This past summer has been very quiet with my cancer.  After having the radiation, things improved remarkably.  However, I feel that maybe bad stuff is going on again.  I am having pain more than I would like in the area of the tumors again.  Next CT scan will tell if that is true or not.

I still feel very tired each day.  If I go lie down, even if I don't go to sleep, it helps me so much to carry on the rest of the day.  I guess it is still the radiation that has caused this tiredness.  But if that is a symptom, I'll take it.  I don't mind having to have a rest most days.

Thank you to all of you to check on this blog.  I haven't had much to say as of late, but that is good for me.  It means my life has been quite normal. 

My heart really goes out to my oncologist who is still out from working since her stroke.  I so hope she comes back.  I miss her and will very much miss her if I don't see her again.

August Oncologist Visit. Still lethargic

I went to see my oncologist on the 25th, really hoping she would be back from her stroke.  No such luck.  She still hasn't gotten her strength back yet.  They say she had a mild stroke.  It doesn't sound like it to me.  It has been several months now since her stroke. 

I did have lots to ask to the replacement doctor.  I still am so lethargic and tired.  I have no stamina.  I am hating feeling this way all the time.  When I wake up in the morning, I have no zip in me for the day.  And I always want naps and to go to bed early.  He said it is still the radiation.  Really?  I thought that was long gone.  But he was emphatic that it was the radiation.  At least I have a reason to feel so tired still.  I go back in 3 more months.

I still have my days that I hurt terribly inside and ache in all of my joints.  Especially my hips and legs.  I can handle that.  It goes away after a few days.  I sometimes wonder if my cancer is growing again.  I will have pangs of pain in that area where I used to before the radiation.  I don't like to think that it might be growing again though.  Other than that, I think I do pretty good.  I just wish I wasn't so tired so much.  I did start going to water aerobics a few weeks ago.  I find it is helpful for my joints to be in the water.  Onward and upward. 

To my doctors.........please stay healthy!!!

August is finally here.  The end of this month, I hopefully get to see my oncologist again.  She has been out for a few months since she had a stroke.  The word was, that she would be back in August.  My appointment is the 25th.  I hope that gives her time to come back.  There should be a rule......that doctors can't have strokes or die.  Yup.  both have happened to me since cancer. 

Unfortunate mistake.

I have not written for quite some time.  I really need to tell what has just happened.  It is very unfortunate.

Two days ago, I called a refill prescription in to the pharmacy that I have been taking for probably 15 years. The next morning I got a telephone call from my family doctor's office.  I knew something had to be wrong for them to call me "out of the blue".  My doctor's nurse was on the phone and said that the pharmacy had just called them and that the prescription from their office and the prescription of my cancer medicine could not be taken together because the cancer medicine would not work taken at the same time. The pharmacy had an alert and so they called my doctor.  Then I was given instructions how to wean myself off of the medication that was interfering with the cancer medication.  I was in a bit of shock.  His nurse seemed to feel that she was surprised that my oncologist had not said anything about the two medications not working together.  After the call, I had an eye appointment with my eye doctor, and so didn't think much about it again for a bit.  At the eye doctor, I was supposed to give them a list of my medications I take, which I did.  His nurse was entering them into their computer, and immediately said, "You have two prescriptions that can't be taken together", which I told her that I had just found that out that morning. 

OK.  Now I have been taking this cancer medication for 5 months.  Since March.  My oncologist and my family doctor both have medication records that I am taking.  Also, my pharmacy has refilled that same medication twice, since starting that particular cancer medication.  Between the two doctors and the pharmacy, not one of them for 5 months had an alert to tell me of the problem, until the pharmacy got an alert today, and of all places, the eye doctor got an alert!!

Who is to blame for this?  I would think both doctors should have told me this 5 months ago.  I have seen both doctors within the past 5 months.  And why was the pharmacy just finding that out now instead of 5 months ago when I started the cancer medicine?  I have gone for 5 months on a cancer medicine that is not doing anything for me!!  I have wasted precious time and money and have all of these awful side effects, for nothing.  Right now, I don't know what to do exactly about this situation.  I am upset.  I feel like I got dropped between the cracks someway. 

There is nothing I can do about it now.  What happened, happened and there is nothing I can do to change it. I just hope that in those 5 months, my cancer didn't run amuck.  Just saying.

"10" pain

Bad week.  Really bad week.  Most of this week, I hope to not live through again.  I woke up in the night Monday night with the worst pain.  I counted it as a "10" on my pain scale.  I needed some help.  I needed pain medication. A long story short, I ended up calling my oncologist and our family doctor.  Of course, when I went in to see my family doctor the next day, I was feeling less pain, and not feeling as bad!!! But when I got in the car to come home, heaved my insides out and felt awful the rest of the day and pain the next 2 days.  This pain seemed different.  It was everywhere in my torso.  Not just my liver area.  It was an awful memory that I hope never happens again.

I really feel GOOD. My hair is all back.

I have had such great health the last month.  There have been about 10 day runs that I have felt just like a normal person before I found out I had cancer.  The only real things that happen lately is when my joints ache.  Especially in my knees and hips.  They will really ache in bed.  That's when I take the ibuprofen and I am much better.  The other is not as bothersome, and it has gone along with the cancer and it is being picky with what sounds good to eat.  It is not as bad as it used to be, but I still have a hard time with things I used to like to eat but now I don't care if I ever have it again.  Mexican food ALWAYS sounds good to me.  Especially tacos.  Kim and I have made a Taco Time run many times.  But most of all, I want to eat fruit, fruit, fruit.  I cant get enough.  So when people ask me how I am doing, I REALLY DO FEEL WELL! 

Oh, and by the way, my hair has officially all come back in.  It is as thick as it used to be, only it looks thicker because of the curl.  I am getting more used to trying to fix it but I just don't think I have gotten the right cut yet for my curly hair.  Others say they like it, and I do have "hair" days that I like it, but it just isn't where I want it yet.  Finally, the last to grow, my bangs are officially the length they need to be, which was the last to get to that point.  Yea!!!!  A full head of hair again!!!!

Pain seems to have worked its way through. :)

Guess what?  The leg/joint/muscle/hip pain finally went away.  I went off the ibuprofen 24/7 and had a couple of days free from pain and discomfort.  It seems to want to creep back into my body, but I zap it with more ibuprofen and then I seem to do ok again.  YAY!!!!

Great news! Not so good news...Gotta have bad with the good I guess.

Good News First........

I saw my Radiology Oncologist yesterday.  He only had good things to say about my CT scan.  All 3 of the tumors have shrunk to half their size.  One a little more, and one a little less.  The internal organs they were affecting are now moving back into their original place and things look good.  They found no impaired veins or organs due to the radiation.  In fact, the little bit of cancer I have in my liver, may have taken on a bit of the radiation and improved a bit. You see, my tumors are not attached to my liver.  They are just free floating around by the liver and pancreas so that is why it was so hard to determine what kind of cancer I had.  I had no serrosis of the liver, nor at that time, any cancer in it.  So it was such good news from the CT scan and I will be having another CT in 6 months.  Soooooo happy!!!!

Now to the cruddy part....... 

 My harmone blocker med that they are using for my cancer, is causing havoc with my body.  I really noticed on our cruise that my legs and hips were really hurting especially when I went to bed I felt it the most.  It just kept getting worse.
Last week, one morning, I tried to get out of bed and I hurt so bad, I had a terrible time getting out.  I could hardly move.  I started pain med which helped somewhat but only took the edge off.  Saturday and Sunday I spent flat on my back.  It was the most comfortable position.  Sitting hurt my hips and knees terribly.  Lying down felt better.  I hurt mostly there, but also my arms and shoulders.  My buttocks felt like I had been bucked off a horse and landed on them.  It was awful.  Even during the night, I would have a painful time moving back and forth in bed.  I didn't know what was going on.  I looked on the internet for my drug I was taking, (Tamoxifan), I called and talked to the pharmacist, whatever I could do till my doctor's office opened on Monday.  I was told that those symptoms were common for that drug and to take ibuprofen around the clock.  Try  to get ahead of the pain.  When I saw my oncologist yesterday, I told him about the pain, and he essentially said the same thing.  Take it around the clock for 3 weeks and try to get the inflammation to settle down.  Three weeks?  Seriously?  It takes that long to get the inflammation down?  I feel like an invalid.  I hobble around like a really old grandma.  REALLY OLD! (Since I shouldn't feel THAT old).

OK.  So I am whining.  I try not to whine much.  But I was told that I may continue to feel like this as long as I take this medication.  I don't even know if it is working.  I don't know what to do.  I feel like I don't want to hurt like this in my muscles and joints forever. I just cant have that quality of life from a medication is how I am feeling right now.  I hope to get the inflammation down and see if it improves.  Right now, I live from pain pill to pain pill 24/7. 

Let's not end on a sad thought.  I am so grateful for my good news.  I have been blessed so much with that.  We went to the temple last night to celebrate!!! And give thanks. 

Caribbean Cruise

We just spent a week in the Caribbean and had a wonderful time with a couple of our friends.  I was somewhat worried that I wouldn't be able to keep up with everyone, as my fatigue has not totally left yet.  I was concerned if I could walk from floor to floor on the ship.  I could go one floor, but the second floor I had to rest.  There was a lot of walking during the week, but everyone was great at slowing their pace. I needed to rest most days in the afternoon, but so did everybody else, so I felt OK about it.

The waiting game from CT scan to CT scan is a hard wait.  Next Tuesday, the 19th, I get the CT to see how the radiation went.  I feel it helped a lot.  I don't itch any more at all and my tumors seem to be less painful.  It will be interesting to see how much they shrunk. My radiation oncologist will see me on the 21st and tell me how it went, and then my regular oncologist will see me a few days later. 

25,000 views

Wow. I can't believe that I have had so many views on this blog.  And you are not bored already?

New Harmone Pill

I saw my regular oncologist this past week.  I haven't seen her since before I started radiation. 

I stopped the old harmone pill, and started a new one.  This one has a few side effects that I don't like, one being that I could start having hot flashes again. Really?  I only had them for 20 years is all!!!!!  But, maybe this is the winner!  If so, bring them on for 20 more years!!!

When I am in my doctor's office, she has me lie down and she presses on the parts of my abdomen where  the tumors are.  Usually, I am not "that" sensitive and I can take the soft pressure.  NOT TODAY!  No matter where she softly pressed, it was very uncomfortable/painful.  She said she thinks the tumors are inflamed from the radiation and that is why they are so tender.  I hope so also.  It sure was different from normal.

My itching is, I would say, 75% better than before radiation.  She and I both think that one of the tumors was causing the itching, and since it is shrinking, the itching has cut back hugely!  That was one of my worst side effects of cancer.  The insane itching!!!  Yay!  Such improvement. 

After listening to General Conference this past Easter weekend, I realize again, God's hand in my life.  I know I am a name, an individual, and his daughter.  I know that the trials I have experienced in my life, have been for a very good reason.  To give me character. To give me empathy for others, and to learn patience, along with other things.  I just hope that I am learning the things from trials that I am supposed to learn and not being a whiner.  Some days I feel like a "whiner-forty-niner!"  Especially the last couple of weeks with some minor surgery and getting a sinus infection on top of the inflamed cancer.  I didn't know which thing felt worse.  Today, I started an anti-biotic and I am hoping to be feeling on the mend, with that and having my stitches taken out.  Life is going to get better soon.

My Flag made it to the top of Killemenjaro

Well, I have been following "Radiating Hope", which is about the Tibetan flags of cancer patients making it to the top of Mount Killemenjaro in Africa.  Bonnie, my nurse at the hospital where I had radiation, went on the trip to hike the flags up, and I got to follow the course on facebook.  It was exciting to see the flags flying between tents, and to see them up close, and the fibers of the weave of the flags becoming frayed just like they told me they would do.  I cant wait to take our personal

 Tibetan flags outside for the summer and watch the fibers go to Heaven, (as they say) and bless the cancer patient.  Pretty awesome, huh!

My flag is going to Mount Kilimanjaro March 20.

I wish there were little frowny faces that I could put on this post.  Just pretend there are, OK?

I saw my radiation oncologist today.  Kim and I thought we were told a month ago when I finished up the radiation that today we would know how the tumors were doing since they got zapped.  Well, that didn't happen.  We had our hopes up to find out if 'operation raisin' worked or not, but now we have to wait for May 21st to find out. ( More frowny faces....I hope you can see them 'cause I can.)

When I went to see this young whippersnapper today,  (remember how I said he looked like he was only 12 years old), we had a talk about how the side effects had been, and still were.  I asked him to show me exactly where those 3 tumors were, and he drew me a picture, and told me they were easy the size of tennis balls!!  I questioned him on that and he said easily that big.  THREE OF THEM!!!!!! Seriously? Was he kidding me? I had no idea that they were that big.  I know I have 5 tumors.  So if three are that big, then how big are the other 2?  It explains to me why my stomach is distended so much and how I know I am not imagining it.  I do know that one of the things one of the tumors was doing was causing havoc with swelling of my left leg and ankle, and that has quit so that tumor must be smaller.  The other two are also going to be smaller. Just you wait and see.  If they were tennis balls, then they aren't going to be raisins.  Maybe golf balls? Shriveled up ones would be good.

Here is something fun.  Remember the Tibetan flags I showed a few posts ago?  Remember how they are taking my flag along with other cancer  patients to the top of a mountain and hanging them for good luck? Well, they leave for Mount Kilimanjaro Friday!!  The nurse who works with me when I see this doctor, is flying to some far away city where ever this tall mountain is, and she is taking the flags and will be climbing the mountain with a group of others.  She will be wearing a GPS so I can follow her and follow the flags going up the mountain.  Doesn't that sound fun? The Internet address to follow the flags is:
                          Radiatinghope.org

It has a facebook page and I am excited to follow Bonnie, my nurse, while she is climbing.  Holy cow!  I got to write on a flag for her today to give her inspiration, I use when I get down with my cancer.  It will be a surprise to her to get these inspirational flags for her to climb with when she leaves.

That is about all I have to say.  I can't wait to follow my flag with my very own name on it. Now I am writing happy faces.  Can you see them?

I am a 'sick' lump on a log! That says it all.

I know I have been bad for not saying anything about my condition 'after' radiation.  Well.....

1.  Sick, sick, sick from nausea in the mornings and into late afternoon.  I finally took Zofran, for nausea in the mornings before breakfast and that helped tons. 

2.  Extreme lethargy.  Tiredness off the chart.

I called the radiation office and she said I could have these side effects a month.  And they would dwindle each week.  The nausea has dwindled, but the tiredness is still really bad.  I keep thinking something else must be making me this tired, but then I think, probably not.  I just need to be patient.

Why is it that anything to help cancer, that they sock it to you big time financially. Doesn't seem fair. 

Last Radiation Day....I am a bell ringer!

What a day!!  Today I finished my radiation.  While I am in the tube, I sing primary songs to help me take my mind off of the loud noises, and the time goes by faster.  Lying there with my arms above my head and having to hold perfectly still for a half hour takes it's toll. 

When I was finished, I was elated.  I went out in the waiting room to Kim and they directed us back in the hall.  The video above is what happened.  There was a gold plaque with a short poem on it about surviving cancer, and how I was done with the radiation, and to ring the victory bell three times.  If you are watching this on a cell or ipad, it probably wont show.  You need to see it on a computer.  All of the crew that has been with me the whole time were there as I rang the bell and they all cheered me on after I did it.

They then told me about these Tibetan flags that have a meaning of hope and health, and I was given 5 of them to hang outside and the weave in the flags are loose, and fibers of the flag will fly out and it goes in the wind for hope and health.( I hung them in the house to see them for awhile.  There is all this writing I can not read on it.)

Then they told me how my name will go on a Tibetan flag and it will be taken to Mt. Everest/ Himalaya's by hikers and hung on top of the Mountain to fly freely and fiber by fiber, go in the wind.  I guess it is a cool ritual.

Then there was a sack they gave me with a blanket and a hat for me.  Isn't that the kindest thing?  I was so impressed and they have been so extremely kind to me through the whole process. 

Remember, this is "Operation Raisin", and that is the main goal here. 

Valentine's Day/ Over hump day

Happy Valentine's to whom ever you are reading this.  I have been making chocolate covered strawberries all morning, milk chocolate and white.  I have a couple of dozen and they look so yummy!

Well, Thursday was supposed to be my 3rd radiation, but after trying 3 times to get the machine to work, they sent me home.  I went back yesterday, Friday, and everything worked without a hitch.  They told me as I left that I now was over hump day,  Yay!  Only 2 more times.  Next week on Tuesday and Thursday and then I am done.  They are extremely nice there.  I can't complain about the company I hang out with there. I mostly am just tired.  That is not considered a problem that I am having from radiation.  I am always tired anyway.

13 hours of sleep?

Good grief!  I was so so tired last night.  I went to bed at 8:00 pm and didn't wake up till 8:45 am!!! Almost 13 hours of sleep!!!  And I was zonked.  Even this morning when I peeked to see the time, I wanted to sleep more but was almost ashamed I was still asleep and tried to get up.  Well, now you know how blasted tired I was. I hope today I am not tired like yesterday.

Much better radiation day!

Woo hoo.....better radiation day!  I didn't get sick.  I did take mediation under my tongue before, so maybe that is why.

They were situating me in my beanbag cast and measuring me this way and that and she moved a soft object from under my arms that I had above my head  and I  tried to move my head to see a soft landing now for my arm, and I screwed up the whole aligning thing.  So they had to re-do me.  I won't do that again.

There are many loud noises going on in the tunnel while I do this and I tried not to think of them this time and let my mind think of something I enjoyed, or sing some of my favorite songs.  It sure helped and made the time go by faster.  Kim was able to go with me this time.  It was a good day.

Again, we were told how they are really giving me a lot of radiation with these five times.  It makes me wonder, what it is doing exactly inside me?  What it does to zap them? With thousands of micro beams, like they said happens, I wonder how it all takes place. Just curious.  I do feel tired. Good day.  And Kim cleaned my car!  Can't get better than that!

My first day of radiation, and getting sick

 

 

These are two of several pictures I had them take of me in the Tomo Therapy machine as I was finishing my first day of radiation.  These are the only pictures I dared put on my blog because of my top and sweats being pulled up and down to show the tattoos on my abdomen/torso that they made. 

The purple is the bean bag.  See how it conforms to my legs feet and ankles?  And the saran wrap stuff I talked about in the last post on top. 

The first picture is me coming out of the tunnel from the radiation.  It all took about 30 minutes and with my arms above my head, they were about dead staying in the position that long.

After the procedure, I went in the doctor's office and waited for him to come in and talk to me.  I had my daughter Emily with me.  Within about 5 minutes, I started feeling green, and I found the garbage can in his office and out came breakfast. I know.  tmi.  Then he came in and I had to go to his garbage can again while he was in there.  [ Embarrassing!]  He felt so bad that it had affected me this way.  We made some plans for next weeks appointment so that I don't get sick, and a prescription. He also told me that everything went perfect and how they really gave me a large dose of radiation today and are giving me the weekend off to get used to it before next week. Emily thinks the doctor looks like he is only '20' years old!  Funny stuff.

Before I left the hospital, I had to run to throw up again and twice on the way home.  I felt an queasiness  till late afternoon.  And I was tired!!!  But boy did I sleep good that night!   1 down, 4 to go!!!  Hoping for raisins!!!!

Getting ready for another phase in my cancer life.

Tomorrow is the big day. 
 
My Radiation.

The first time.

I am excited, yet scared.
 
Through faith, my scaredness seems to be less than my excitement to start this amazing process.  Like I said, they were going to do a phantom surgery, meaning they are doing the surgery without me to make sure all the I's are dotted and T's crossed before I come. 

Last night, was an interesting night.  I kept wanting to cry.... for no reason, or at least I didn't know the reason.  I just wanted to cry and have Kim hold me.  Then in a few minutes, it would happen again.  I think it is build up in my brain for tomorrow.  It's just another crook in the road of the unknown.

Radiation!!

The Bean Bag Suction.......I am a seal-a-meal!

Oh Goodness, where do I begin with this day?

Today I had my Radiation Dr. Appointment.  The office people were so pleasant and kind.  Then we waited for the Doctor to come in.  The door opens and in walks this young nice looking young man about Shane's age.( My youngest son who is only 31).  Kim and I couldn't get over it!!!

He had two plans.  One was less strong radiation with only 3 different directions of radiation coming.  It would be about 2 weeks.

The other plan was much more aggressive and the radiation would be thousands of micro beams. (His choice).

I went in a room today for them to essentially make me a body cast out of a bean bag.  I laid on a CT scan table where the bean bag was laying on top.  4 people prepped me for this first essential CT they would go by.  I had them tucking suction tubing all around and under the bean bag and over the front of me.  Then they put something that looked like saran wrap all over the top of me.  Boy were they tucking everything perfectly.  Then they turned on suction, and it sucked every bit of air out around my body and the bean bag formed to my body all around me. It was the weirdest sensation I have ever felt.  They asked me to wiggle my toe, which they could see through the plastic on top, and I couldn't.  They gave me the CT scan and from that they know where to tattoo 5 dots on my stomach to align with some sophisticated instrument to send the micro beams. By being in suction, I can't move one smidgeon which could make them make a mistake.

 I was told that several people will be in the room when this happens because there are so many things that have to happen precisely as planned.  In fact, they will be doing a phantom surgery on me before I ever come back to make sure they do everything perfect.  If they hit a vessel or something that they shouldn't.......well....we wont go there, because they wont. 

The machine will zero in on three big fat tumors that is pushing up against my kidney and some important blood vessels that could eventually really cause me problems.  This machine should turn those tumors into a raisin, is the way they put it, and essentially split the DNA and it will die.  They could start up again sometime, but I would have to wait a year to do anything again.

This was the most interesting thing I have ever seen!!  They helped me out of my body bean bag mold and they put it in a closet for me every time I come in, and did I mention?  I only have to go 5 times!!!!! Awesome! Then they take another CT scan in about 3 months and see the tumors and what they did.  Mine will be raisins! 

There is just so much to tell about this. I hope you found it as fascinating as I did.  I go and get my first radiation Thursday.  I most likely will be fatigued after, and could be nauseated since it takes place in my stomach.

My family will be fasting for me this Fast Sunday.  We need total precision in this process.  That is what we are fasting for.

So there is my day.  Was your day as sophisticated as mine?  Oh......hardly.  Admit it.

Goodbye to my wigs

Guess what got put in a box and stored away? Right there.  You can see them.  I have worn them almost 1 1/2 years now.  In fact, I think of the brown one on the right as me now.  That to me was my new identity.  It was longer than my other hair used to be but looked so natural on me and I loved that one.  The black one was my "ooh-la-la" wig.  Whatever that is supposed to mean. My black hair look. Not my fav.

So away they go, and I am 100% into my real hair now.  Like I said before, one puzzle piece at a time my life changes.  This is for the good.  They were really itchy and I didn't like wearing them anyway.  Bye bye, to that part of my journey.

Good News or Bad News? Radiation is coming.

Wow!  Good news or bad news is the question?  I accept this as good news........

Two days ago, I saw my doctor to have her report to me on my CT scan.  All of the tumors have grown about 1/4 inch, one a little more than 1/4 inch. So that harmone blocker was not working, and the tumors continue to grow.  She wants me to start radiation.  She didn't know if radiation could even get into there and zap them.

Well, I just got a call from her today telling me that the radiation oncologist whom she picked, seems very positive that he can help me and that he should be calling me to meet with me. Wow.  Awesome!  It won't be a walk in the park.  She said it most likely would be every day except weekends for 4-6 weeks!!  Holy cow!  I sure hope that they let me drive myself.  I can't expect others to haul me down there every day for weeks.........that would make me feel sooooooooo uncomfortable.  (Take a deep breath..........)

So where do I go from here?  I wait for this doctor's call, which I think will be soon.  Then my Heavenly Father will guide the rest.  "He" is in the driver's seat.  I am going along for the ride. I hope the ride isn't real bumpy.  I kind of choose them to be smooth, but who am I kidding?  I need to prepare for ruts in the road.

The Puzzle of my Life

 

I have been putting this puzzle together that I got for Christmas.  It is a 1000 piece puzzle, and as you see, I am not even close to being half done.  At this point in the puzzle, I am having a hard time finding pieces for other areas.  I look at all the pieces that I have left, and I wonder if I can really finish it.  As I sit at the table, I look through the box, and I find one piece that fills in a hole here, and then I find another that fills in a hole there, and then another and so on.  It seems tedious, but I think that it is one less piece in the box.

 

I thought how this is like my life right now. Waiting.  One way is with my hair.  I want it to get past this stage that it is.  I am so grateful that I am not bald like last year.  I am also grateful that my hair came back.  But trying to get past this curl is trying my patience.  I want my hair the way it used to be, because I knew how to handle it.  I knew how to fix it.  I knew how I wanted it at the salon. 

 

Now,  all I know how to do with my hair is fluff it with gel.  I keep hoping that at some point it will go back straight like it used to be and that I can have "me" back again.  I just have to wait, "one piece at a time". I am hoping that those pieces are in my life puzzle. 

 

 

 

It's like that in any part of my life.  Sometime's it's the "waiting game",  and I don't usually have patience for it.  Through this trial of having cancer, I really have learned about "the waiting game". Just like this puzzle.  Things happen, one piece at a time.

 

In 4 days, I get my next CT scan and see how the harmone blocker has done the past 4 months.  I have a feeling that it hasn't worked, but we will see.  I see her on January 20th and she will tell me. 

 

 

 

 

 

Feeling Down and not feeling Well

I really have not had very many good days since Christmas. It has been hard to feel that I am deteriorating with using this harmone blocker and know that I can't see my oncologist for three more weeks.  I hurt and ache through my whole body and feel really weak.  Almost flu like symptoms but I know that it is not.  I feel worse in the mornings and feel normal about 2:00 in the afternoon. 

Kim had a talk with me about this last night.  Essentially, that I need to buck up.  He didn't say that, but after our talk, I told myself that I needed to accept what is happening and pray for help.  We got a book for Christmas that Kim is reading first, and it has good advice for people going through trials.  I will give some points of it when I get a chance to read it.  Kim is inspired as he is reading it. I really think that the aches and pains are coming from the harmone blocker.  I hope so, and can't wait to try a different one when I see her. Oh, I want to know what that CT scan is going to show!!!!!