Even if you are finally "cancer free" it will always be with you mentally

Wednesday, January 25, 2012


This week, so far, I haven't had energy to do anything.  Taking a shower was a chore.  Went with Jack to his doctor appointment and that took everything I had.  I hate feeling this way.  How anyone can work through chemo is a mystery to me.  Of course there are good days and bad.  I guess I'd consider this entire week as not so good.

I suppose the side effects affect everyone differently and of course, the various drugs or mixture of drugs can bring about differences as well.  I just hate feeling this helpless.  I didn't expect chemo to be a walk in the park, but until you experience it, you just can't imagine any of it.

Still haven't gotten my head shaved, have about 1/4 of my hair a quasi-mohawk...sleeping on my side probably helps to rub the hair off the sides of my head.  LOL  Maybe I'll go in next week to get it all taken off.  Its actually not really bothering me any more to see it falling out.  I think its rather comical.  But I'm finding it everywhere.

Gearing up for the next treatment this coming Monday.  

Friday, January 20, 2012

Losing My Hair

I started losing my hair this week. Of all the side effects I have experienced, this is the most dreaded. I would be willing to bet its the most common first question oncologists are asked by women, "will I lose my hair?". Probably lots of reasons why but most likely because our hair is our "crowning glory". Most women express themselves through their hair. Even if you don't wear makeup, you probably still do something with your hair. I do...I get it colored and cut once a month; earlier in my life because I think I should have been born a redhead and now because I'm over 50% gray and still feel I should be a redhead. Your hair can make you look older or younger than you are. Men love long hair. Women love long hair too. Little girls love playing with hair (well most do), either their own, or their friends' or their dolls. Its just so much a part of who we are as females. But when we are dealing with cancer and chemotherapy, the hair loss does one huge thing. A friend who has gone through it stated it perfectly. Seeing our bald head reminds us that we are ill. It slaps you in the face, there is no getting around it. Not that we forget, how can you forget this experience. But in between the treatments, after the immediate side effects subside, its easy to shove it to the back of your mind until the next treatment, especially since having a positive attitude about surviving is so important. The constant fatigue can be managed. But when you look in the mirror or pass a reflective surface, wham....the bald head reminds you. Yes, we wear hats, scarves and even wigs, but each day, at some point you have to see your head. And you are reminded of the battle you are waging.

We all have our ways of dealing with it. I had asked my hairdresser if I was ever to go through chemo and start to lose my hair, would she just shave it for me, as I'd rather face the inevitable than watch it slowly get thinner and eventually fall out completely. Of course she said yes. So within the next week or so, I'll go in and get rid of it. I'm going to stick with hats and possibly some scarves. I'm not working during this whole thing and am pretty much sticking close to home. I will, though, choose a wig, compliments of the American Cancer Society, and try to get used to wearing it, for when I do go back to work as my hair won't even start to grow back until long after I return. I think I will feel more comfortable riding the train, walking in Chicago and working in the office with some semblance of normalcy. I will also learn to apply eyebrow pencil correctly to simulate eyebrows. Maybe even some eyeliner to help with the lack of eyelashes. I'll have to see about these cosmetics might be better to just go without, since I don't wear it to begin with.

I have another friend who apparently has been looking for an excuse to shave her head. I have now provided that excuse and she is so ready to do it! LOL I actually think she can rock the bald, on the other hand, not so much. Oh well....its just hair and as I've told myself and others who get upset about a bad hair will grow back.

Sunday, January 15, 2012

Feeling Good

Today has been a good day. I managed to get myself down to my glass studio for the first time since my chemo treatment. Thankfully I do my glass work sitting because I know I wouldn't be able to stand for long. It's just so weird to feel good so I try to do a few things and have to rest after a little bit. Sleeping doesn't help this kind of fatigue. I can't imagine having to walk from the train station to my building and back. I truly don't think I could make it.

What is so crappy about feeling good is that by the time I feel almost normal, it will be time for the next treatment. So this whole process will start again. The only good thing I can say is that I will know what to expect. I will take the anti-nausea drug BEFORE I get sick. The chemo drugs in the next treatment are the same as the first. I'm not looking forward to a change in drugs further down the line, but I'll just cross that bridge when I come to it.

I'm very surprised and happy that Jack decided to start coming into the treatment room. He's not big for hospitals and has never visited me when I've had my various procedures over the years. Which is fine, I really don't like visitors when I'm in the hospital. But the chemo treatment room is different. Like I said before, you come to know your fellow patients and conversation helps the time go by. Jack loves to talk, so he has become quite comfortable in there in a short time. I do like having him there.

Time to load the kiln, get it going and drag my butt upstairs. It was a good day...

Friday, January 13, 2012

Bloodwork Friday

I have bloodwork every Friday throughout this entire chemotherapy. They check levels of various things going on in your body, especially the immune system stuff. They know what it should be at various stages. Today my numbers were right where they want them to be, which makes me happy. Next week is when they expect the levels to be down to their lowest. Then the week following they check again before starting the next round of chemo to make sure your body can take the chemo. So all is going as expected except for my stupid porta cath. Still couldn't get blood out of it. They tried the stuff that should have cleaned out the fibers that are stopping the outward flow of blood, even letting it set awhile. Still nothing. This is not a deal breaker, it just means they have to use my uncooperative veins to draw blood. My veins like to hide. The nurse told me that they have seen everything, though. They had one woman whose cath did not give blood for 2 years then out of the blue it started. They never give up in hopes that it might work. So every week we will try it.

Most patients get on a specific schedule of treatment, which means you see the same ladies every week, especially since the chemo lab is in the doctors office (so we all have the same oncologist and since he is a gynecological oncologist, his patients would all be female). Its nice because you develop a camaraderie with women who all understand what you are going through.  Many times they have a male family member with them which can lead to comic relief.  (sorry guys, but you can't help it)  Its like a little extended family in that you can feel free to talk about, in detail, any side effects you may be experiencing.

It also lets you see that, no matter how bad your cancer is, there is some one who has it worse.  Last night I was feeling down, something I try not to let myself fall into.  But today there was a new woman in there for her first treatment.  Within the past year, she has lost her husband and mother to cancer.  And while she was busy caring for them and the aftermath of their lost battle, she realized something was wrong in herself.  She was diagnosed with stage IV uterine cancer that had spread to other internal organs.  She has a job but no insurance, so being a "self pay" patient, she is not eligible for any of the case studies, which include new, promising drugs.  And she still had the attitude that let her join in our conversation and laugh.  Sorta brings it all into perspective, no?

I'm not saying that I can't have sad days, but I mustn't ever let them take over.  My chances of survival are far better than average.  I'm lucky to have my job and good insurance.  I have a multitude of friends (some who have been through it) and family praying for me everyday.  And a well respected oncologist taking care of me.  So as I am fond of saying, "suck it up, buttercup".

Oh, and I lost another 5 pounds....

Wednesday, January 11, 2012

Out and About

After my little tasks this morning, I rested a bit then put on some clothes. We decided to get out of the stale house air and go to the post office. It's a gorgeous day (calm before the winter storm tomorrow) and I have to try to move about. Friday is another doctor visit for blood work and a flush of my cath to clear out the fibers blocking the withdrawal of blood and I want to be able to walk in on my own steam. I think I've laid in bed non-stop long enough this first time and the only way to get moving is to force myself to do a little at a time, when I can. I'm thinking or hoping most of the immediate side effects of the first treatment are over(?) Now just to deal with the fatigue and whatever else comes along. I still have all my hair, so I have that to look forward to.

I came up the stairs slower than normal. The muscle/joint pain is really taking its toll on my knees. The nurse did say that if I had any weak points in my body, those would be affected more so than the rest of my body. She wasn't lying. My knees were replaced years ago, but the left one needs work but all in good time. I have pain meds for that and will use them effectively, that's for sure.

So we're back home, ate some lunch and I'm feeling a nap coming on. This is the best day since last Friday, so far.

Tuesday, January 10, 2012

Rough Couple of Days

The last 2 days have been less than good..actually pretty bad.  After the joint/muscle pain set in, Monday I woke with the most excruciatingly painful headache I've ever had.  It was literally making me ill.  I called the doctor's office and one of the nurses instructed me to take the vicodin, which thankfully, helped.  I stayed in bed another whole day since the other pains were still lingering.

I'm going to be optimistic today that I may be able to shower and possibly even take a walk to the kitchen.  Can't promise much else...

My family doctor called yesterday.  I love her, she is a pistol.  She had just then gotten all the notes and such from my oncologist on what was happening.  She was very concerned about them doing all the insurance stuff right so I didn't get hit with any of that.  We went over my new drugs and any changes the cancer doc may have made.  And she told me to call her for anything I may need, especially the vicodin.  I was as helpful as I could be, considering how I was feeling, but she understood and will most likely be checking up on me periodically.  I did get back with her last evening through the online "NextMD" site with some of the drug amounts and she wrote back that the insurance stuff is all good.

Update!  Yay, I managed to shower!  Wore myself out but now I can stand myself.  I'm also changing the sheets on my bed.  It may take an hour, but I'll get it done.  And does everyone know how good cottage cheese and peaches taste?

Sunday, January 8, 2012

In a Day...

I went from feeling pretty good to feeling like I've never felt before.  The muscle/joint pain side effect hit like a ton of bricks.  Literally over night.  No position is pain free.  I have vicodin, which gives some relief and ibuprofen helps a little.  I had to get out my walker from my knee surgery days just to walk at a shuffle.  It's coming right on schedule, according to the literature. Thankfully, this will go away within a couple of days or less.  But when you are in the throes of this, you think you will never feel normal again.

I don't have an appetite but when I make myself eat (or I should say, when Jack reminds me I should eat) it goes down good.  And tastes good too.  He will make me anything I want.

I'm not a person who can lay around for long...I always like to be doing something.  So today has not only been painful but frustrating.  But I have to listen to my must not want me to move right now, as a dear friend said.  OK...fine...

Saturday, January 7, 2012

1 Down, 5 To Go

Friday I received my first chemo treatment.  I can't say it was a piece of cake, but as they say, "that which does not kill you only makes you stronger". That goes for cancer in general I'd say.

My porta cath seems to be stopped up so they can't draw blood, but it allows flushing and the chemo to go in.  So next week they have something they flush through there that cleans off  "fibers" that cause this.  Not uncommon.  But it will add about 2 hours to a 5 minute blood draw.  Crapadoodle.  But what else do I have besides time?  lol

I am a part of a clinical trial that includes 3 chemo drugs:  Taxol (Paclitaxel); Carbo (Carboplatin); and Avastin (Bevacizumab).  The trial drug is the Avastin and how it works with the other drugs I will be getting.  I did have a reaction to the first drug, Taxol, but as soon as they stopped the flow and waited about 1/2 hour, it went away.  It is scary, though.  I got severe lower back pains that also went down the front of my thighs; pain and heat across my chest and upper arms; and my blood pressure went up a bit. I didn't flush or anything else they really would have been concerned about but the nurses were all over me.  They all have over 12 years experience as oncology nurses, with the head nurse well over 20, who has been with my doctor all that time.  I feel very secure in their care.  As they started the drug flow again, they explained that it may have just been a first time reaction, my body saying hey, I don't like this, but adjusting.  Which thankfully turned out to be the case.  No more reactions after that.  Whew.

This first time took 7 1/2 hours to get the drugs in me.  Could have been a little shorter but we discovered I have a "positional cath" which isn't something special just a nuisance.  It just means the way it was positioned in my body and the way it settled causes the flow of the drugs to slow down or even stop depending on how I'm positioned.  As long as I was reclined back, it flowed well.  If I sat up or got up to walk it stopped flowing.  It also flowed well if I sat up and breathed really fast, but I can't hyperventilate my way to a cure.  LOL  It kills my back to stay in that reclining position for a long time or maybe its the chair...but looks like I will have to "suck it up" as I'm fond of saying and deal with it.  I'll try a different chair next time too.

I was able to eat a little, some greek yogurt and granola bars, and drink while getting this, since they also include an anti-nausea drug in your non-chemo drug cocktail.  Drinking is extremely important as it keeps you hydrated and helps to flush the chemo out of your kidneys.  Anything you can drink is fine, water, of course, being the best.  The chemo does affect your taste buds, so things you may have liked before may not taste as good.  As I've bitched about before, I hate water.  But the MIO water additive that I've come to love still tastes OK so I'll get my fluids. My appetite will decrease, but as long as I keep up with my proteins and eat what I can, I should be OK.  I certainly wouldn't suggest this as a super weight-loss plan, lol, but hey, if I have to go through it and as long as I eat right, I'll take whatever weight loss comes along.  I, as opposed to some others, have the spare weight to lose.  There was one lady in there who definitely didn't have the weight to lose and has lost 18 pounds in 3 weeks.  But she has been having huge problems with the nausea...they've had to try everything with her.

I was feeling pretty hungry when I got home, so had some shrimp and sweet potatoes.  Went down just fine.  Then about 2 hours later, the nausea hit me.  Big time.  Couldn't throw up, wish I could have.  I already had the 1 anti-nausea drug here that I'm supposed to take 3 times a day, but starting Saturday morning.  I had another one waiting at the pharmacy that can be taken in between when needed, but thought it could wait to be picked up until today.  Bad plan.  So finally at midnight I took one of the main ones...screw the plan I had to start those at 7 in the morning to get on a schedule.  And I'm glad I did, that with one of my clonazapam, which also helps with nausea (who knew?) and within 20 minutes my nausea went away.  Thank the powers that be! Still had a restless night but at least I felt fine.

Feeling good this morning, slept in and my morning(?) coffee tastes good. Jack and I have discovered that planning anything for the day after chemo is not a good idea. So I'm just doing what I want and will take it easy.  The hard fatigue isn't supposed to hit until 3-5 days after the chemo, so I've got some time I guess before I deal with that.  My hair should start falling out in about 2 weeks.  Yippee-skippee.

So far, so good, I will say.  Positive thinking all the way!

Wednesday, January 4, 2012

Porta-cath is in

A small milepost today.  I had the porta-cath surgically inserted.  If you don't know what that is, it's a piece of plastic medical apparatus that is inserted under the skin, in my case, on my right shoulder, right under the collar bone.  it goes into a vein and allows the chemo drugs to be dispensed via IV without having the nurse have to find a vein every time and also lets them draw blood for the blood tests.  There are probably better medical explanations for it, but I only understand the bottom line definition. Since its under the skin it doesn't interfere with anything and doesn't get infected.  It has to be flushed periodically and will be in me for quite some time.

The procedure went well but it took the entire day!  I'm tired and need to rehydrate myself since I couldn't drink anything for well over 15 hours.  And I was STARVING.  I feel fine, wasn't totally "under" but only under what they call "twilight"  I could hear things but was drifting in and out.

The site does't really hurt and tylenol should keep any pain at bay.

So Friday I should be starting my chemo.  I'm a little nervous but only regarding side effects.  I can handle the fatigue and hair loss, but I hope I don't experience any of the other ones, at least not for long periods of time.

I feel bad for Jack...he sat and waited the entire time.  Or walked around the hospital, trying to find a comfortable place.  Bless his heart, he was a trooper and even came to recovery, which he doesn't usually do.

Time for some TV and sleep.

Tuesday, January 3, 2012


It was fate that made me get up and go to work today.  Maybe not for me.  But a stranger on the train.

I had my monthly train ticket for January that, unfortunately, is non-refundable.  I didn't know about the chemo in time to stop the auto purchase.  Oh well...$139.00 wasted.  You can't sell them because everyone that needs one has it by the first business day of the month.  I did use it one day. But tonight I sat in front of a woman that asked the conductor if they had found a monthly ticket and his answer was no.  After about 5 minutes, I turned to her and asked if she really had no idea where she lost it.  She said she did leave it on the train, but forgot to pick it up before departing.  So I gave her my ticket. I had no use for it and why waste it?  She couldn't understand why I would do that so I told her this was my only day riding the train this month because I was starting chemo.  She was so thankful for the ticket because her husband was out of work.  We chatted a bit, come to find out she had uterine cancer and chemo when she was 20 and she is now 60 and cancer free.  So in a way, it was good for me too, because it was another story of a cancer survivor.  Another story of hope and success.  We ended the convo by her asking my first name because she was going to add me to her prayers.  That brought tears to my eyes.

Then I got to my stop, stood up to button my coat and get my bag and promptly fell backwards as the train lurched to a stop, thankfully landing on the armrest before hitting the floor.  Shook me up bad and Jack's words came to mind:  "no good deed goes unpunished".  hahaha just joking. But I was very happy that my ticket didn't go to waste.  And some extra prayers are always a good thing!

Little nervous as the days get closer.  Tomorrow is surgery day.  Piece of cake!

Monday, January 2, 2012

Moving Forward

Talked to the chemo nurse today, I get the porta-cath surgically inserted on Wednesday and I will be starting chemotherapy this Friday.  The process on Friday will take 6 1/2 hours!!!!  I have a steroid drug to take prior to the chemo, to help prevent any reaction to one of the chemo drugs.  I also have some anti-nausea meds ready for after the chemo treatment. I hope that I will be spared many of the multitude of side effects. I hope my head isn't too ugly.  I may have a difficult time looking at it. LOL  I couldn't look at my hysterectomy site for some time after the surgery. 

I'm going to work tomorrow for the last time until mid year.  That sounds so strange and scary.  This all still seems so surreal, I can't believe it has come to this.  I really thought I was going to be able to pass up this poison they call chemotherapy, that I might be one of the fortunate ones.  But truthfully, after the exterior spots appeared, I knew the cancer was still in me, that it wasn't over yet.  This is probably why my CA125 number has never gone down to a level that made my oncologist happy, but all of the tests and scans did not show anything until recently.  Cancer is so insidious.  It  hides in your body, waiting until it finds the chance to show it's ugly face. 

So with a positive attitude, we will move forward through this week.