Back on Chemo- Back to rash- back to Itching-

My oncologist called me Wednesday evening.  I was really not expecting her to call me after hours.  She had just talked to my dermatologist. With the knowledge she learned from him of my situation and how the  Nexivar, (my chemo) really was the cause of my rash, she still wants me to go back on it. Only one pill a day instead of four.  She is aware I most likely will get the awful rash again, and it could be worse this time. (I can't imagine it being worse but what do I know)?

Knowing these things, she feels I need to go back on it and that the dermatologist will be able to give me some relief for the itching this time around.  The dermatologist  did say he could help with that. That means I most likely will get the moon face from being on prednisone for a length of time and a rash from head to toe, literally. I can't wait!  This time I keep taking the chemo even with the  rash.  I don't go off of it.

I also learned, that there aren't many drugs that help my kind of cancer. I don't have much to choose from. I hadn't been told that before.

I can say this pretty sincerely. When the rash covers my body and face, I will not be going out among  you all. I will hibernate for the up-to-twelve weeks that the rash can last. I looked so bad last time, so I can pretty much  assume how this will play out.

That is the plan as of today.  I will start chemo after I go to my class reunion on Labor Day weekend. I told my doctor that I couldn't go to my reunion covered in red welts. I'll bet everyone reading this wouldn't either.

I don't see family pictures in my near future. Maybe in 2014.

(Also, I truly can't believe how many times this blog has been viewed! It is nearing 5,000! I had a friend ask me how I knew that many people.  I don't! I just have lots of loving people who care to see how I am doing on a regular basis.  Thank you for loving me through this.)

Dermatologist visit

I went to the dermatologist today.  He looked at what is left of my rash and very positively said it was not hives and was a rash from  the Nexivar chemo med.  I showed him the pictures I took of me and all the pieces fit as far as he was concerned to be a reaction to the med.  He said if the Nexivar isn't that much better of a drug than an IV drug, he would change drugs.  If it is a lot better than any IV drug, then no matter how much of the Nexivar I take, 1 pill a day, or 4 pills a day, (which I was taking), it will still cause the rash, only next time it may be worse.  He said if my doctor still wants the Nexivar, he can give me stuff to help with the rash and itching, but it will still be pretty awful for me and could still be very uncomfortable with the itching. 
So now what?
 
I don't know.  I just keep getting road blocks all along this road to recovery.  It would be so nice to just have a smooth ride.  But I guess no one learns lessons in life if the road doesn't have holes and bumps in it.  I just wish I could have some new asphalt.

I don't see my oncologist for another week. 

Dermatologist. Why can't I just be a text book case?

Today I saw my Oncologist.  She has been out of town and saw my pictures of my rash/hives for the first time.  She is so perplexed.  My Nexivar should not do what it did to me? And if I had been allergic, I would have had troubles breathing with as bad as it was.  So my perplexed doctor is sending me to a dermatologist . She wants to speak to, ( in my case) her and get her expertise.  Since I still have quite a rash on my trunk and legs, she wants to see me in 2 weeks.  In the meantime, I am shedding like a dog and no chemo medicine till then.

Relay For Life- Hair Loss

This has been an emotional week so far.  But then, it seems I have a ton of those kind of weeks, don't I !!!!! Here are some things that happened:

1)  I have been off of my chemo for 12 days tomorrow, when I see my oncologist.  I was only on it 9 days, when I got the rash, and have been off while my rash goes away.  It is weird.  It almost went away, and it seems it is appearing again, but not raised welts and doesn't itch.  I don't get it. 

2)  Morgan County had their Relay For Life last weekend.  A couple of months ago, my sister said she thought I should enter a "Team Terry Lynn".  The only problem, was most of the teams had been earning money for their team for all year.  We were just getting started.  We decided that since at this time, we needed the money  to help pay bills from all of my medical expenses more than I needed to help make money for cancer research, that we bagged the idea of getting a team to walk.  However, I did want to go over to  the high school and see how Relay For Life worked. 

I was so overwhelmed, I couldn't talk for the first several minutes after I arrived.  Everyone was so happy, and coming out of the bleachers to come on  the track to walk after each cancer survivor was called.  It was all I could do to choke back tears and keep it together.  I didn't want to cry.  Everyone was so dang happy!!  What was my problem?!?  Neighbors who saw me, came over and put their arm around me and I knew if I said one word I would start tears that wouldn't stop.  So I probably seemed unfriendly for the first while to familiar faces.  Then I kept hearing people say, "You need a shirt".  I didn't know what shirt they meant.  Pretty soon, Kim and I were dressed in Relay For Life shirts.  On the back of mine, I was supposed to put how many birthday's I had had since my cancer.  On the back of Kim's it said he was a Caretaker.  That's when I couldn't stop the tears. I had held back long enough.  They just streamed down my face. " I REALLY HAVE CANCER!  IT ISN'T JUST A BAD DREAM!"   So Kim and I walked around the track, holding hands and I continued to cry.  This was the happiest sad thing I had ever seen!   Why was I the only one that seemed to be a boob?  I finally told Kim that I couldn't stay any longer.  I needed to go.  I needed to process this in my mind this year.  I said I wanted to go swing on the swings at the park!  So we did.  That was my Relay For Life Experience. 

3)  Well, today is Monday, and this morning was monumental in my book.  The dreaded day arrived that I didn't want to ever have happen.  My hair started coming out.  Washing it this morning, left a whole pile of hair in the drain.  My heart skipped a beat as I picked it out.  I then rinsed it again to see if it really was my hair, and sure enough, a whole pile of more hair in the drain.  I got out of the shower and texted Kim.  I was upset.  He assured me he would always love me no matter what happened to my hair.  I combed through it and it kept coming out in my brush.  When I blew it dry, I could take my hands anywhere through my hair and get a handful.  And that is exactly what is happening now, and probably will continue. I don't understand why it is coming out now since I have not been on the drug for so many days.   I don't know, but I just didn't want it to happen yet.  I am having my class reunion in a few weeks, and I really didn't want to go to it with a head wrap.  If that wouldn't call attention to me, nothing would, and I don't want special attention.  Hopefully this will stop before it gets too bad.

Mountains to Climb

This was sent to Kim and I to watch.  It gave us such comfort!  I hope you enjoy it!

Letters from my mom...30 years after she passed away.

This is an incredible story! I still can't believe it!

Through all of this cancer stuff, I have really wanted my mom to be near me, and I have wanted to feel her presence some way.  I have felt my dad's presence, but not something extraordinary from mom. There is just something about one's mom that feels so good to have her there when you are feeling down and sick, that I don't think you ever get over. Especially, I know mom knows what I am feeling as I go through all of this cancer stuff, since she died from breast cancer almost 30 years ago from today. I have requested her presence in many prayers.

Last week, out of nowhere, I got a padded envelope in the mail, addressed to me from a cousin of mine whom I haven't seen, nor even knew where she lives for probably 25 years.  As I opened the envelope, out dropped letter after letter in my mother's handwriting that mom had written to her sister while she was going through her cancer.  In fact, the dates of the letters are within 6 months of her death.  One is within 2 weeks.  My cousin does not know that I have cancer, and had no idea how much these letters would mean to me.  She had a whole pile of letters her mother had saved during her life, and these are ones my mother had written her.  My cousin thought I might like them.  LIKE THEM......ARE YOU KIDDING?  I had prayed that my mother was aware of what I was going through, and the timing of these letters coming to me right now was no coincidence! Whatever mom did to my cousin to prompt her to send these to me right now, I may never know, but I intend to find out.

In each of these letters, I felt the letters were meant for me.  She would talk about how she felt from her cancer, and how sick she felt.  She talked about after her mastectomy, how the cancer had spread in other places.  Then I about died when I read, and I quote: "My cancer is progressing and is now in my liver. I am starting to bloat and have tenderness over the liver.  My doctor gives me 4 to 6 months".  Mom died 3 months later. I never knew mom's cancer went into her liver.  And that was my symptom when I first saw my doctor, was the pain of the bloating.

My cousin also had a story that another of my mom's sisters had written about mom.  It was a month before she died.  My aunt flew mom to Portugal where she lived so she could spend some time with her before she passed on.  The letter is an account of mom's last month, and how spoiled she got spending time with my aunt.

Even though these letters were not addressed to me, they were for me.  Right now.  In what I am going through I needed to read in my mothers handwriting, how she felt when she was going through what I am.  This has been a little miracle for me.  I am go grateful to my cousin from some kind of prompting, to send these to me. 

So yes.....I received letters from my mom.  30 years after her death to tell me she loves me and is aware of my struggle.  Thanks mom!  I sure love you and miss you!!

Hives from my chemo and the port in my collar bone

 Here is my chest/neck with  the hives I talked about in the preceding post on my blog.  I about went crazy with the itching in the night so we went to the emergency room. I was given benedryl and prednisone.  When I was in the hospital a couple of months ago with the biopsy, they put this port under my skin so when I started intravenous chemo, it would be ready.  My neice Shayli told me I needed to name it.  Then Kim said I should think of my favorite port I have been to.  I knew immediately it was St. Lucia.  So my port is named Lucy for short.  I have not got to use Lucy, since I take oral pills, but that will change if my pills cause me this much distress.  I was told to stop the pills until I see my doctor on Tuesday from my hives.  Anyway, that is Lucy! And might I add, I REALLY dislike her.  She is always black and blue from bumping her. You can see the tubing under my skine that goes up my neck into a main artery.

That is my back.  Couldnt get a very good picture taking it by myself.

My arms are covered, and scalp, and legs.  This morning I noticed my face is getting it also.  They arent this severe yet.  I sooooo hope that my face doesn't get worse like these pictures.  Wow,I have had lots of posts the last few days.  I have a really neat post I want to post soon that happened a few days ago.  About my mom who died 30 years ago, almost to  the day.She died from breast cancer at age 49.  I cant wait to put that post on.  I dont want to overwhelm anyone readying this with so many stories and pictures.

I might add, that my chemo could produce a skin rash, but this is extreme.  We will see what my doctor says on Tuesday.

Also, I am sorry for this being so graphic, but it is part of the Road I am Traveling.

Well, last night several symptoms kicked in. Not a good day.

What a difference a day makes! I started aching like crazy in the night, I hurt everywhere.  I woke up to my whole body in hives, (except my face, but I feel that is coming).  I itch like crazy. I feel pretty awful.  I called my doctor.  Left a message, and hope to hear from her soon.  My appetite is also gone.  Nothing sounds good.  Welcome to My world of Nexivar!  I sure hope there is some aid coming quickly. I feel like I have been run over by a truck.

Side effects of chemo after week #1

Ok.  I am so lucky thus far into my treatment. If I only have these side effects, I will be a happy camper!
1. Like I said before, my palms are heat sensitive and sore.

2.  The bottoms of my feet are sore. I have to have slippers on around the house.  They are too tender to go barefoot.

3.  My tongue feels like it is burned so the taste buds don't work.  I am not enjoying eating because  I can't taste the darn stuff.  ( I will admit that this is the worst symptom).

4.  My head is getting really sore, which is a sign that I may lose my hair.  I have been vain about this, I will admit it.  I don't want to lose my hair.  When it started getting sore, I thought about it.....if I was losing an arm or a leg from a side effect, that would be reason to be horrified.  I may just lose my hair, and IT WILL GROW BACK!  I can't grow back a body limb!  Who knows.  Maybe my gray will come back brown.  Or I get natural curl. Or I become a red head. Or it comes back silky smooth.......or....or......I know. Now I am being silly.

So after week one, that is where I am on this "Road I Travel" these days.  It is a new life.  I am trying to get used to it. I am told it takes about 1 1/2 weeks for the symptoms to come.  Maybe more will surface, but I am not sick.  That is good.

You all give me such courage!  And when I hear from so many of you that you pray for me, it makes me so happy, thankful, and tearful.  I just wish you all know how that makes my heart feel so full. This is the happiness that has come out of this trial for me.  All of you and your kindness and prayers for me.  The tears drip down my face as I write this, because of you. I am blessed by you.  A huge thanks!

PS. Whoever is sending me the happy face notes,  Thank you.  And I love the sand dollar!