A Day of Big Tears…….

This has been a day of crying…….crying, crying, and some more crying.  Just haven’t wanted to write about it. 

I got up this morning and felt good.  I decided it was time to try to get my hair washed and look presentable again.  I hadn’t even taken any Tylenol when I went to bed last night.  So I took a shower, dried my hair, and styled it a little bit.  It looked pretty good from the front.

And then there is the back……always the back! :)

A dear friend called me from Little River and updated me on the happenings there.  She said, “I hear you are coming home soon!”  I told her that I sure hoped to be able to after the 15^th.  It was so nice to talk to her.  I was telling her how I hated to miss all the Christmas festivities that were going on there!

As soon as I got my hair fixed we went out to eat breakfast at Einstein’s Bagels.  Today was to be the warmest day of the week, so we decided to get to the grocery store.  Later this week, snow is forecasted.  Yikes!  Not ready for that.  All I have here are 3 long sleeve T-shirts and a couple zip-up sweat shirts.  I figured we could get home before the really cold weather set it.

We had not been back long from the bagel place when I got a call from Dr. Mammen’s office.  It was his PA, Dr. Ramero.  She wanted to know how I was doing.  I told her I was good.  The 1^st couple of days were rough, but I was doing good now. She then said that the pathology report was back from last Wednesday’s surgery, and the margins were not clear.  WHAT?????  NOT . CLEAR!!!!  My whole world came crashing down around me and turned upside down.  She said I needed to come to his office this Thursday at 1:50 and talk about the next surgery, and it would involve the plastic surgeon.  It never occurred to me that he might not have gotten it all – just never entered my mind!  I hung up the phone and wailed!  I cried and I cried and I cried.  How could this be??????  Why, why, why????? God, I can’t do this anymore!!!!  I just . can’t .  do . this!!!!  I don’t want any more surgery!!!!!!  How can I do this all over again?????  It’s not fair, it’s not fair, it’s not fair!!!!!  I thought I was through with all this and going to be able to go home!!! NOOOOOOO!!!!!

After I basically just couldn’t cry any more, I called her back – got a voice mail, but she did call back fairly soon.  I told her I was in such shock when I talked to her, but I needed her to know that we could NOT wait on this next surgery.  This cancer was viscous, and I could not wait until it went to my skull again.  I said If I waited until Thursday and then had to wait another week for the surgery, that was too long.  I made sure she knew that this was URGENT!!!  I would come tomorrow if there was an opening.  She assured me that she was working diligently to set everything up.  She had tried to contact the plastic surgeon, but he was in surgery.  She said he was good about getting back to her.  Dr. Mammen was out of town tomorrow, so the surgery would not be then.  She did say that sometimes he does surgery in the evenings if he cannot get on the daytime schedule.  I said that was fine – I would come in in the middle of the night if I needed to!  I just wanted this done ASAP!  I didn’t want it to go far enough that he would have to do another FLAP!  YOU CAN’T HAVE MY RIGHT ARM FOR A FLAP!!!!!  My right arm is MINE!!!!  She thought that even though it would require some plastic surgery, it probably would just require a graft.  There’s no guarantee, of course.  The plan would most likely be Dr. Mammen removing more tissue.  Then he would wait for the path report to make sure it was clear.  Then Przylecki would do the closure with a graft.  Thus 2 more surgeries.  And another donor site to heal.   *sigh*

I talked with Guy and cried.  I talked with my daughter and cried.  I talked with my sister and cried.  I texted with my son who was in NY waiting for his flight home.  I got two cards from my sister today – both of which I needed, but made me cry. 

I have pretty much spent the day grieving.  Grieving the loss of continued recovery.  Grieving the loss of going home for Christmas.  Grieving the loss of more of my scalp! Grieving over yet ANOTHER setback. Grieving over the thought of more pain.  

God……are you there????????

Until now, I’ve been disappointed that I had to take chemo.  Now……I’m practically begging for it.  As soon as these surgeries are over, let’s get that show on the road.  KILL this viscous monster!!!!!!

I just don’t know what else to say………

As always, I’m in His hands……..but I don’t feel like it right now!!

Sunday update....

I haven’t blogged for a couple days because there wasn’t all that much to talk about. Friday, I woke up in a crabby mood.  My newest incision HURT, and I was TIRED of this whole mess!!  I ate breakfast and had a pity party for about 15 minutes, and then I went into the kitchen and ate a piece of fudge.  Chocolate takes care of lots of things!

Isn’t it strange how we wake up?  What makes us wake up on “the wrong side of the bed”?  Is it a dream we’ve had and can’t remember?  Is it an awkward position we’ve slept in and don’t even realize?  I doubt that, because I’ve slept in an awkward position ever since this surgery mess started.  I wasn’t supposed to sleep flat after the 1^st 2 surgeries, and I’ve not been able to sleep on the back of my head or any of the left side.  So I’ve slept on 4-5 pillows and used a neck pillow to prop up my right cheek to keep my head from flopping to the right when I fall asleep.  I use a pillow on my right side to prop up the neck pillow.  Occasionally, I just throw all the pillows but one off the side of the bed and lay flat!  Then my right shoulder and right ear go to sleep.  Last night, I couldn’t take it any longer – I turned over to my left side and slept for a bit on the left side of my FACE.  It feels really weird to lie on the left side of my head, because that part of my scalp and my ear are numb.  It is just hard to describe what that actually feels like.  Once I get the OK to sleep on my left side, I won’t know when to turn over.  You usually turn over after your ear goes to sleep.  That’s what wakes you and signals it’s time to move.  You know that feeling – your ear hurts like crazy when the blood flow returns? ARGH!  So you can see that sleeping well is a bit of a challenge……

The day Friday improved as time went along, and I actually only took 2 Tylenol.  The nurse came by to change the arm and leg dressings, and said they were still healing well.  There is just about a 2 ½” square area near my wrist that is still a bit moist. 

Later in the day I had Guy try to clean up my head a bit.  With sterile water and a 4x4 he got some of the dried blood that was away from the incision and in my hair.  I’ve still not been able to wash my hair.  I just think it is a bit too early to get the actual incision wet.

About noon Guy came downstairs after taking a shower, and asked, “Do you want to ride along?”  “Where are you going?  To the grocery store?” “No, to the doc-in-a-box.”  What????  I had been trying to get him to go to the doctor with that awful cold and cough of his for 3 days!!!!  Now all of a sudden he decided to go.  I couldn’t go with him, because the nurse was due to come by.  It is too bad I didn’t go with him!!  All the doctor did was look in his nose and said, “Yep, you’ve got a sinus infection.  Everybody’s got one.  Here is a prescription for amoxicillin.”  HE DID NOT EVEN LAY A STETHESCOPE ON HIS CHEST!!!!!  Oh, my goodness, I was so furious!!!  And do you think Guy said, “Oh, uh, wait a minute, you might want to listen to see if I have pneumonia”?????  NO!!!  MEN!!!!   They go to the doctor and play this guessing game.  I’m here, and I’m the patient.  You’re the doctor; now you guess what’s wrong with me.  They don’t offer any information; and they don’t ask any questions.  ARGH!!!!!!!  What a waste of time and money that was!!  He’s still coughing and wheezing to beat the band – just like he was.  I guess when he passes out on the floor, I’ll call an ambulance, and they can take him to the ER. *sigh*

Saturday morning, I seemed to get up on the right side of the bed!  Woohoo!  Guy (still coughing) took me to The Egg and I for breakfast.  It was nice to get out, but it was cold, cloudy, and windy.  I couldn’t find the scarf I usually put over my head, so I used one of the hats I had – the one that looks like a surgical hat with the wide brim.  That stuck up enough that it didn’t touch the incision.  Better than the scarf anyway.

In the afternoon, we watched Alabama clobber Florida during the SEC Championship game.  It was a frustrating start – which it seems, for Alabama, to be the norm, but once they got in gear, it actually ended up being kind of boring with us being so far ahead.  I don’t know what we are going to do when the college football season ends.  Neither of us cares all that much for basketball.  We used to love to go to the junior college basketball tournament games when we lived in Hutch.  I guess it is a lot more fun in person.  To get to a college football game is a major effort – AND EXPENSIVE – the crowds are enormous and parking and walking are a real hassle.  You have to go and just make an entire day of it.  The last Alabama game we went to was great fun, though, and I’ll never forget it.

Today is Sunday, and another day inside.  It has been so long since I’ve been to church.  I didn’t get up early enough to watch any TV preachers.  I couldn’t believe the clock when I finally woke up – 9:39!  Don’t know when I’ve slept that late!  So I made some pancakes for breakfast.  Sula handed me a box that was already open that she had bought.  It was gluten free.  I didn’t want to turn her down, so I went ahead and used that mix to make them.  We kind of choked them down.  😀  Hard to beat the good ole Bisquick for pancakes.

I sat in my favorite spot in the dining room (no sun this morning), read my Bible and a devotional book and listened to the Collingsworth Family on my iPhone.  Then I listened to Rick Swing’s podcast from Westwood Baptist in Alabama (where we attended).  That was as close to church as I could come today.

This is the very appropriate devotion I read:

The Self-fulfilling Prophecy

But as for me, I will hope continually, and will praise You yet more and more. Ps. 71:14

The self-fulfilling prophecy is alive, and well, and living at your house.  If you trust God and have faith for the future, your optimistic beliefs will give your direction and motivation.  That’s one reason that you should never lose hope, but certainly not the only reason.  The primary reason that you, as a believer, should never lose hope is because of God’s unfailing promises.

Your thoughts have the power to lift you up or to hold you down.  When you acquire the habit of hopeful thinking, you will have acquired a powerful tool for improving your life.  So if you find yourself falling into the spiritual traps of worry and discouragement, seek the healing touch of Jesus and the encouraging words of fellow Christians.  And if you fall into the terrible habit of negative thinking, think again.  After all, God’s Word teaches us that Christ can overcome every difficulty (John 16:33).  And when God makes a promise, He keeps it. - From New Every Morning

It would be very easy to get discouraged on this new journey I’m on, but I just can’t allow myself to take that road.  I know I can’t be “up” every minute of every day, but I do try to surround myself with God’s Word, good reading, uplifting music, my family and my many, many supportive online friends.  Together, I can make this.

As always, I’m in His hands….

Surgical update....

Here is an update on my Surgery yesterday, Wednesday.  We had to be at the hospital by 7:45 am.  We left shortly after 6 just so we didn’t have to get into the rush hour traffic. I think the thing I dreaded most was getting an IV started.  I only had one arm they could use, so I was praying greatly as the nurse began!  She got right in, into the middle of my arm!  I learned later that she had only graduated from nursing school this past May.  She used a little numbing medicine, so it was not all that painful.  I told her I was praying for her, and she said, “Well, it was answered!”  The other thing I dreaded was gagging on that plastic airway while waking.  I remember that last time.  Thankfully, I was not aware of that this time.   BUT, the worst part was the pain after the surgery while in recovery.  With the other two surgeries, I don’t remember being in much pain in the recovery room.  This time it was quite excruciating!  I don’t know how many times she gave me IV Fentanyl.  I remember the last surgery getting a large enough dose of it that I was having trouble breathing.  That’s what I kept being concerned about every time she said, “I’m giving you some more Fentanyl.”  I didn’t have trouble breathing, but it didn’t really help the pain.  She gave me 2 Percocet by mouth, but that was going to take a while. She called the resident doctor over, and he OK’d some IV Toradol.  That helped just a tiny bit, but not nearly enough.  The doctor finally OK’d IV Dilaudid.  FINALLY – I got some sweet relief!!!  But then I just wanted to sleep, and they just wanted me to get dressed and go home.  I guess I was about to run out of “outpatient time.”  At one point, before they gave me the Dilaudid, they talked about keeping me over night.  I finally decided I was going to have to get dressed.  They practically dragged me out of the bed, wheeled me to the bathroom, and help me dress while Guy went after the car.  But at least my pain had eased to about a “1”.  We left for home about 2:00 pm.

I guess the top of your head is more tender than all the other areas.  With the other two surgeries, my head never hardly hurt at all.  Of course, most all the areas of the other incisions are numb.  I assure you, this one is NOT!!  There is an inch to 1½" incision with 8 stitches (and more hair shaved! But that's all right since I'll probably lose it all anyway).  He did not have to do a skin graft (so thankful for that!) – just pulled it together with the incision going from front to back.  It is quite tight!  If I make any movement of my face – raise my eyebrows, frown, laugh – it hurts.  It’s funny, I can smile, and it doesn’t hurt.  It is amazing how all the muscles of your whole head are connected.  I decided I was going to take that Percocet every 4 hours to stay on top of the pain.  I took one at 3:15, 7:45, and one at 11:45 before going to bed.  I took Tylenol every 6 hours.  I was amazed that I slept through the night hardly moving and not getting up to take any pain med.  I think that is actually the best night’s sleep I’ve had for some time.  I got hardly ANY sleep the night before the surgery.  My wheels just kept turning and turning from the visit with Dr. Powers that day – chemo, PET scan, chemo, chemo.  ARGH!  I tried so hard to focus on the positive part, but you know how it goes sometimes at night – everything looms larger than life.  I had told Guy I was looking forward to the anesthesia just to get some sleep! I think he only slept about an hour, too – he has a bad cold now. ARGH!

Anyway, I got up about 9 this morning, even though I woke up about 8.  I decided to only take Tylenol today, but this afternoon, I had to break over and take a oxycodone, and that helped immensely.  I’m a little dizzy if I move my head too fast, but I suppose that is a little hang over from the anesthesia.

The OT lady came today to check on my left hand usage.  She was amazed at how much use had returned.  It is weak yet, but I can move it well.  The only issue is my thumb.  It is better than it was when I was having the stabbing pains last week.  I’m sure it probably has something to do with some nerve damage from my wrist.  I’ve had a good bit of muscle-wasting at the base of my thumb.  I just can’t bend my wrist as normal yet, but I’m not really supposed to do a lot of that yet anyway.  She talked about massaging the scar once it is healed to help loosen the skin from the underlying tissues.  That will take a good bit of massaging! I can tell you that!  It is very tight – just skin nailed to the muscle.  That continues to heal well.  While I was in the pre-op room, my plastic surgeon came by (since I was supposed to see him in his office that day anyway).  He took a look at my arm and my leg and said that both were doing great.  My arm has dissolving stitches in it.  That’s great because I had told Dr. Mammen it would be great if Dr. Przylecki could come by while I was out during the surgery and take out my arm stitches!  Sure glad I don’t have to go through that now!  Dr. Przylecki said to see him again in 2 weeks.  I’ll see him on that Wednesday, then Dr. Mammen and Dr. Powers on the day following.  Hopefully, after that time we can head back to Little River!

I called Dr. Powers nurse today to say that my preferred site for the chemo was Hutchinson, then Wichita, then McPherson – whichever one of those he would be most comfortable with.  I look for that to start after the 1^st of the year.  I suppose it could be before Christmas, but I hope not.  In the meantime, I’ll just keep checking my head – hoping for no new bumps!

Someone did the sweetest thing – today I got a box in the mail.  

It was a little Christmas tree!  Ornaments also came, but I need to find some wires to hang the ornaments.  I’ll get those at the store the next time we go.  The tree is pre-lit, and the colors change.  It is so pretty and colorful. Now I have a little Christmas spirit in my life – sitting by my chair, right by the fireplace.  Many thanks to whoever sent it.  (It’s one of two people, I’m pretty sure!)

Tomorrow the home health nurse comes, and as far as I know, she is the only commitment I have next week.  That will be nice, especially since there is a chance of snow flurries Wednesday.  Now if I can just get my hair washed over the next day or two and get this nasty saline-stiffness-that-make-it-feel-like-a-broom out of it, I’ll be a happy camper.

Thanks once more for all the prayers and sweet thoughts.  “Thanks” seems like such a small word to use, but I really do mean it!!

As always, I’m in His hands…..

OK – STOP scrolling of you don’t want to see the picture.

It really looks worse than it is - it's all goopy with Bacitracin. My face is to the left.