The Hair Is Fleeing

So, what is it like to know that you are indeed losing your hair because of chemo?  Weird.  I suspected this was starting to happen to me Sunday.  My scalp itched more than usual.  I had tingles in my scalp, odd tingles.  On occasion there would be a hair on the loose – more often than usual.  Add to that the hair I was starting to find on my shower soap.

Monday my suspicions were confirmed.  If I ran my hands through my hair, I would end up with a few in my fingers.  If I lightly tugged, I got a few more.  If I ran a large-toothed comb through my hair, I got a few.  So, when I showered, I decided not to rub my hair – just get it wet.  Then I would not rub it dry, just pat it.  In the shower, I did tug a little bit on my hair . . . a little more came in the tug. 

I was right – I was losing my hair.

I have spent the past few days dealing with more and more shedding.  It reminds me of a dog shedding hair, as it seems to get on everything:  back of the chair, my shirts, bathroom sink, etc.  I sometimes go out on the deck just to fluff my hair.  At night I wear a cap to help keep my sleep area free from falling hair.

We are to go to Ohio this weekend, and I know that I do not want to be messing with this.  So, I am at a crossroads – when do I go for the buzz cut and switch to hats and a wig?  That’s easier said than done.

Yesterday I called my friend Becky, my support and advisor in these matters, as she had helped out my pal Val.  I told her my dilemma and where I am in all of this.  She understands my situation somewhat, as a result.  We decided that probably today will be the day – not sure when I will give her the call; but this is probably the day.

This has been a dreaded moment.  I had hopes I would be that odd statistic and not lose my hair.  To me, losing my hair makes it more apparent to everyone -- including people I do not know -- that I have cancer.  I am not comfortable with that.  I would prefer to keep that limited to my family and friends.

At least I have come to the point where I realize that I just have to deal with this.  I will.

Settling In on the Routine

Here it is, Friday.  Today I return to the oncologist’s office to give them blood to be sure we are good to go.  I can’t say that I am excited about this – who would be excited about having a blood draw?  What is disconcerting to me is that this has to be commonplace.  Eight infusions – eight blood draws.  That does not count needles for chemo nor for shots nor for additional blood draws that may be required.  UGH!

There are times when I wish that this was all over with.  Notice, I am not complaining about having to go through this – I just am tired of it.  BUT, there are others who have far worse situations than I do that will go on far longer than my situation will. 

As I tell myself at moments like this, "Just deal with it!"

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What makes it hard is the unknown – when will my hair fall out?  Can I return to work?

Question

Does a person lose her nose hairs, 

as well as her eyebrows and eye lashes, 

when she loses her hair because of chemo?

WEIRD THOUGHT

(The answer is YES.)

Chemo Begins for Real

Monday I started chemotherapy.  For the most part, I did all right with it.  Probably if there was a day when I felt a little queasy, it was yesterday.  Maybe I should have taken some of my anti-nausea drugs one more day.  (Actually, this is why I am back to taking them today.)

Last week’s initial attempt to start chemo was very disconcerting, as I had been told we were on hold because of some spots appearing in my CT scan from the previous week.  The doctor wanted me to have a PET scan to see if these were signs of more trouble before doing anything, lest he need to change course.

By late afternoon, that plan had changed and chemo was on for April 9.  

I had a port put in the end of March.  It is located on the right, just below my collarbone.  I have been told that this is my new best friend because it will save on my veins.  Blood work and chemo will be done through that port.  We used it this past Friday when doing a blood draw in preparation for Monday.

My initial chemo drugs are Adriamycin and Cytoxin.  I had been told by Dr. Benjamin that these drugs are nasty.  A lot of care has to be taken when putting them in a patient's body, as they can quickly destroy tissue. 

My primary nurse is Nergiz.  She was the one who successfully accessed my port Friday for the blood work, as it was not cooperating.  She is from a place outside the USA, and I will eventually learn more about her as I return for chemo over the next few months. 

The needle that is inserted into the port is somewhat stubby and not as thin as injection needles are for shots.  So, it hurts a bit when I get jabbed.  For some reason my port does not make things 100% easy for me, as it sometimes takes quite a few tricks to get the blood return so that the nurses know we are good to go.  Monday we started out in one of the infusion rooms.  I was partially reclined so the nurse could access my port easily.  That did no work.  A few other things we tried:  lifting my right arm up over my head, turning on my side, coughing.  Eventually we moved across the hall to another room where the chair reclined even more.  No success.  So, Arlene, the other nurse taped a few things and we moved to one of the examining rooms, to a place with an even flatter surface.  Finally, we got it!

The first thing I did, once we were ready to start, was take five small pills while I was getting an initial drip that contained anti-nausea drugs and a steroid.  The pills were a combination of anti-nausea drugs as well as a steroid.  The purpose of them, and the drip, was to minimize anticipated side effects from the chemo.

Once the drips were done, Nergiz came in and carefully injected the Andriamycin and Cytoxin into my port.  The drugs were a deep red color.  Nergiz had to inject it carefully, because if the drugs were to escape the vein, there would be major problems.  After the drugs were successfully injected, then the port was flushed with saline solution.

I would say the process took maybe three hours.

Patty, who was with me again as my driver/companion, was fascinated with the process, ready to ask questions and just get a good look.

I really did not feel bad after the first infusion.  Patty and I had to stop at the drug store so I could get three prescriptions filled, two anti-nausea drugs and one steriod.  Those were to help me through the first few days after chemo.  I was told by the medical people that if those drugs did not keep me from puking, I needed to let them know.  They had other drugs they could use.  There was not reason to be sick.

Tuesday I had to return for a shot of Neulasta.  This drug helps keep my white blood cell count up.  That is key to my staying on schedule.  Side effects I have been told I can expect include aching bones and muscles.

My energy levels have been all right so far.  I have felt all right as well.  We'll see how things go as time goes on, as I know the effects of all of this is accumulating.

In the meantime, I have to decide about work -- can I  return or is my compromised immune system a problem? 
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How did it seem to me to be at this point?  Almost like it wasn't really happening.  It is an odd thought to realize that I do have a serious disease and that tough things have to happen in order to possibly have good results.  This happens to other people, not me --- WRONG!

I was a little teary-eyed for the start of chemo.  I sat in my recliner with some tissues.  I was all right, if I didn't talk; but I did want to talk with Dennis about the day.  It wasn't that I was afraid.  It's just that I didn't quite know what all to expect for the day.  I think the day was just another reminder of the reality of my situation.  It isn't going to go away -- ever.  It can be brought under control, but the threat of cancer will always remain.  I was doing all right by the time my ride came -- but I tossed in the box of tissues for just in case.

God Makes No Mistakes`

A song that has often ministered to my heart during difficult times is one that was written by Ron Hamilton, a man who lost an eye because of cancer. Was it a mistake that he lost his sight as a young man? What has come of it?  

I think the same of Joni. Was it a mistake that she had her accident and lost the use of her legs and arms? What has come of it?  

What about me? Is it a mistake that God has put in my life this battle with  cancer? What will come of it?

Hm-m-m.

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Here are the words of the song that has often ministered to me. I have again been thinking of it and humming it. 

God never moves without purpose or plan

When trying His servant and molding a man.

Give thanks to the LORD though your testing seems long;

In darkness He giveth a song.

I could not see through the shadows ahead;

So I looked at the cross of my Savior instead.

I bowed to the will of the Master that day;

Then peace came and tears fled away.

Now I can see testing comes from above;

God strengthens His children and purges in love.

My Father knows best, and I trust in His care;

Through purging more fruit I will bear.

O Rejoice in the LORD

He makes no mistakes,

He knoweth the end of each path that I take,

For when I am tried

And purified,

I shall come forth as gold.

Three Times Now

I must admit that I am struggling today. Why? For the third time since this all began, I have been postponed. I did say to my sister-in-law, who was with me, "I just don't get it. I can never seem to catch a break."

I was to start chemo. Since this was the first day, my oncologist wanted to review with me the results of last week's bone scan as well as CT scan. That made sense, as don't we all want to know results from any tests we take?

The bone scan was good. It showed some signs of arthritis -- not sure where -- but that was about it. That was a good sign. Cancer had not spread into the bones.

The CT scan looked good as far as the organs (lungs, pancreas, liver, lungs ...) and the chest; however, it showed some possible problems in three lymph nodes near in my chest area. (I have to "research" this to see the area . . .). Slightly enlarged. Small spots. This sometimes does occur; but it is not very common. It does not necessarily mean there is a serious problem. The explanations were

(1) a reaction to my surgery, since lymph nodes were involved;

(2) possible start of cancer there. UGH!

Dr. Benjamin was not wanting to start chemo, if there were other cancer-type issues to address. He was thinking a PET scan. If that indicated no sign of cancer, then things would go on as planned. If it looked suspicious, then I would have to have biopsies (UGH!).

I can't say I remember what the plan would then be -- would a different type of chemo be the plan, one that attacks cancer vs one that is to keep it away? Would it be something they could deal with with radiation. I did not like the thought of more chest surgery, as I am hardly recovered from this one -- although Dr. B thought the area looked more healed than last visit two weeks ago. So, chemo was going to be put off until next Monday -- subject to change again. (My sister-in-law/friend was with me, and she was taking this all in, too.)

Did we come right back home? No. I needed some time to just work through this. We got in the car. I was, as usual when these things happen, quiet. Then I said let's go to Perkins so I could drown my sorrows in black coffee and muffins. (I have a gift card from my colleagues at school for Perkins, and so I sprang for the bill. Am I not the generous person??)

I know that usually I am ok, but sometimes I just need time to be quiet and just sort through things. I was not depressed, as I would sit quietly. Then I would talk. Then I would make some smart remark. We'd laugh. We'd get on with regular conversation. Then the same pattern would repeat itself.

From there we went to do a little shopping -- we had the day AND I wasn't suffering after-effects of chemo. I was dealing with after-effects of disappointment. Actually, Dennis had been disappointed the other evening to realize our desktop computer is too old to get it to access wireless. So, I decided to shop for a second laptop. It didn't need to be super-fast game friendly. I got a Compaq for $298. I also found a cool hat for my new collection. Hope to get Skype going, as this has a webcam built in. [Dennis hardly does anything on the computer, except check espn.com and other sports sites, especially during baseball and college basketball season.]

I could not find Dennis at work to tell him what happened. Went to church to tell Doris (church secretary and Hospitality Committee head) things needed to be moved a week, as church people had signed up to help with transportation and other things for the next weeks and beyond.

Got home. Message was left. I thought it was the call to tell me when to be in Syracuse for the Pet scan. I could see Dennis had heard it -- not that he understood it. It was Dr. Benjamin. He had talked with Dr. Gibbs, the radiology man at Cortland. Dr. G told Dr. B that the spots were too small to be picked up with a PET scan. It would probably be better to go ahead with the chemo and then do another CT scan afterwards to see if there is any change in those other lymph nodes.

I really am not sure what I think. While "The Plan" is on, just a week later than planned, there is now that uncertainty about whether or not I am showing signs of developing more cancer in the lymph nodes in another area. I am working through this and reminding myself to leave it in God's hands. I have no control over my future in this regard. ONE DAY AT A TIME.