A strange turn of events

I had the second round of chemo yesterday, and went for fluids today. I will never cease to be amazed at how things happen.

Today I met a fellow breast cancer patient. The difference is that she is a young mother, about 30, with two children and is about five months pregnant. She has had fibroid breasts, and for a long time she was told is was only that. At the beginning of the year, she found it was growing.

They tested, and she ended up having a mastectomy because her tumor was 4.5cm. She had twelve involved lymph nodes. When she went to the restroom, her friend explained that she is listed as a Stage 3, but is more likely a Stage 4 because they cannot do a scan due to her pregnancy.

She has a great attitude. But it is so sad. Young women are not being screened as they should. Breast cancer is hitting these women. They have a right to yearly mammograms too.

As for my hair loss, I am one of the millions of lucky women who have experienced hair loss over the years. I really got tired of it, and I got tired of paying over $60 every six weeks to have cuts and highlights. When I would leave, my hairdresser would say that my hair looked so good. What a load of hog wash! I knew better.

So in December of 2005, I made the decision to buy a wig. I found a circular for a place where I could order on line. They had a sale. It was 2 for 1. I ordered two wigs. One was too light, but I still have it. It’s not really comfortable. Perhaps when all this hair is gone it will be better.
The other I wear almost every day. When I went to get my prosthesis, they said that they also sold wigs. I told the fitter that I was already wearing a wig. She was amazed. It is so natural looking.

Since the first purchase, I have ordered a "summer" wig. That is a necessity here is Swamp Land. I also ordered a human hair one, but I need to do a little styling of it. It’s a little too straight and limp.

I am set for the loss of my hair, and in reality because of my hair history it's not really a big deal to me. I even ordered fake eyelashes along with the human hair wig!

Take care of yourselves! I am going to rest.

What's a life worth?

Insurance, whether it be auto or health, is a real pain in the neck (or place of your choosing). A lot of insurance, like auto, you have to have. Homeowners insurance is required by the mortgage company, and you have to be lucky enough to have health insurance, but my statement still stands. It is a pain.

When I got my EOB for the pet scan, my health insurance denied it. They stated that the cost was too much and it was an experimental procedure. I thought I was looking at $4500. Several weeks later, the hospital and insurance company managed to settle on a payment. I wasn't privy to the method of calclation

Yesterday, I got the EOB for the mastectomy. There were probably twelve items listed, and each one was "Hospital incidental." They had various amounts next to them ranging from $27.50 to $18,426.56. The amount the insurance will pay, and this is listed next to each and every one, is $120.75. So that means of a bill of $30,893.45, my insurance company will pay $1,449.

I knew the hospital was out of network, but I also have coverage for that. It is 60/40. Where is that shown. It isn’t. This should be an interesting journey!

Oh - on other news, the hair is beginning to go. I first noticed just a few hairs more than normal. When I ran my fingers through it, there was lots more!

Today was chemo round two - so far so good, even though the CBC showed I am a little anemic,

The vampire

Our weekend was relatively uneventful. Nothing much happened, which is perfectly fine with me.

Today I had to go to the lab for what will be my biweekly CBC. It is in the same building with the oncologist, but today was my first visit. I think the subsequent visits are going to be - "interesting" to say ht least.

When I was called back, it was obvious that the tech wanted to use the right arm. I would have been perfectly content with that had I not been warned to not even allow blood pressure to be measured in the right arm. So I told her that I had to have the left arm used.

The needle didn’t hurt one bit. I thought these would be a breeze. I left and drove to the bank to access the ATM. When I put my hand out to put in my PIN, I looked at the inside of my elbow. The pad was fairly soaked with blood. That has never happened to me before - ever, ever!
I completed the transaction, drove home, and removed the bandage. I have a lump of blood that is about the size of a pencil eraser under the skin.

I have at least 15 more of these!

A poor post

Disclaimer!!!! This is a post full of moaning and groaning with a heavy icing of self doubt. Continue only if you wish to be completely turned off by my weakness!

With the news about Elizabeth Edwards’ reoccurrence of cancer, all the news services are finding other people who have also had reoccurrences of cancer. I know they are trying to show the courage of these people as they are valiantly continuing to fight, but for those of us who are in their first fights, it is not encouraging. They are not making the future look bright.

At this point I am struggling to remember those who have been survivors with no reoccurrence. Those are the folks I would rather hang with! Just last Friday the echo tech told me she was a nineteen year survivor. I am surrounded by these people, and yet I am hanging on the stories of reoccurrences.

I guess I will go back to the recesses of my mind where I have not truly accepted that I have breast cancer. There is still that part of me, you know. I find great comfort in sneaking back there - a lot. It’s much nicer than the truth.

It's been a while!

My life has been delightfully devoid of anything worth recording here. I feel like I have been in a state of suspended animation. That is sheer bliss these days.

Today is my usual appointment with the oncologist, where, I suppose, I will get the results of the echocardiogram I was given last Friday. The reason for the test was "poisoning by antineoplastic chemotheraphy." Sweet.

After the echo, we left to go to the SSB. G wanted to check on the barn before we paid the remaining payment on it. The builder did a good job. There had been heavy rains there since we were up last. The desert can become really beautiful after a rain. We are not really in the desert, but it is certainly a transition area. Anyway, the grass was so green!

I did nothing all weekend. It was bliss. Since the only effect of the chemo was to make me tired, that was a wonderful time. Lots of rest.

We did make a stop in San Antonio on the way home. My 86 year old MIL is going to have her other knee replaced next week. I really think dementia has grabbed her by her left ear lobe! I think she is going to have a lot of problems recovering from this surgery. She is very fragile.

Some bad news came early this morning on the news. I hope it isn’t as bad as it seems. Elizabeth Edwards has an announcement about her health. I certainly ammore sensitive to news about other breast cancer survivors. She has not been a survivor that long. She is certainly in my prayers.

Reality Check?

Nope, not for me. I realize I am happily still floating down that river in Egypt. I am still in full and complete denial which is rather amazing!

Yesterday was the first of the chemo sessions. When I got into the chair, the nurse asked if I had been through chem school. Nope - never heard of it! So I got an abbreviated version.

This came AFTER it was discovered that my port was deep. Thanks Dr Surgeon! No little stick, poke and it’s in. No it’s digging for it!

The first treatment went quite well - especially when I discovered that I don’t have to have a driver. I can take myself. That made me very happy.

Today was fluids day. When I was sitting in the waiting room, another woman was on her phone. She was talking about her impending chemo. She was in for just a check. She said she was due for chemo school on Tuesday, then beginning chemo on Thursday. She said she was relizing that she had breast cancer now.

Funny, after the mastectomy, now the chemo, it still isn’t really sinking in yet. I just feel these are thinks that are having to be done. I’m not looking at the real reason. I wonder if there will ever be a reality check?

Well, Lady Bug is going to be here in a bit. Monkey Boy is having an ENT appointment to check his hearing. His speech is a bit delayed, but with the speech therapy he is getting he is already getting better. The hearing check is not a bad idea however.

Time to put on the prostheses, and kick myself into high gear to get ready to Lady Bug!

Question

There are things we don’t want to admit about ourselves. I know there must be a million that I keep from myself. I never wanted to think I was a control freak, but when I stand back and look at myself, I guess I am!

I did control much of what my children did when they were growing up. I put that off to parenting. I guess some was, but then again I think some wasn’t.

Facing this chemo, I realize that I am a control freak. I want it to go the way I want it to go. I want the schedule to be what we have set. I have my appointments set through the end of the month, and I want them to follow that schedule. But, and thanks Leeann for you comment on the last post, I must realize that there will be changes. This is not my ball game. I don't make the rules.

One aspect of this whole chemo thing is that I have to depend on others to get me to my appointments. I don’t like that at all. I am so independent. When I want to go, I want to go. There is the glimmer of hope that I will be able to drive myself after this first one. The site is close by, so I just hope I will be able to take control of my life again.

How do you hand the reins over to someone else?

A little bit of this and a little bit of that!

What a mixture of events this weekend. It all began on Thursday when I went to Dr Surgeon to have the remaining staples removed. He, like the oncologist, wondered about antibiotics, since the incision was rather red. But he didn't prescribe anything.

That very evening, I ran a fever - 101. I know antibiotics need to be used only when needed, but come on. If the incision is red . . . So I called Dr Surgeon on Friday morning, and they told me to come in - right then! He drained about 3 syringes of fluid from the area. I think my sensitivity to the silicon tubes caused them to clog, and the fluids were trapped. Anyway, I am on antibiotics now.

The problem with that is will they continue with the chemo on Wednesday? With the time change, the oncologist office has not changed their phones from weekend mode yet. I can't reach them. Ah, another drama.

Saturday we went to get my prosthetic breast. Dr Surgeon said that the insurance might not pay for the pro thesis and the reconstruction. I went prepared to pay outright for the pro thesis. They convinced me that insurance would have to pay, so that was the way we went.

I must say, it is a different feeling that going natural, but I feel much more secure. The silk scarf, ace bandage and two socks that I had been using were certainly not as nice as this "fake boob!"

I finally got to get my eyes examined for new glasses. It will be great to be able to see again. My present glasses are two years old because I had a aneurysm in a capillary in my right eye that had to be treated with laser surgery. I waited for a while for my vision to settle down, then I got lazy. I would use the excuses of kids going back to school, so the optical division would be too busy, or they were on vacation and it would be too busy. My glasses will be ready in 7-10 working days.

I had been reading Rana. She had gotten some great glasses via the Internet. I had wanted the progressive sunglasses as well as the regular. I asked the guy how much they would be. He quoted $240. I nearly fell off of my chair. I checked with the Internet place. I ordered a pair for less than $100 on Saturday. They will be shipped in two to four days. What do you want to bet I get the sunglasses before the regular ones!

I have rambled enough for one day. It was just a very busy weekend with so many unrelated things going on. Have a good week!

Will it be fun?

Back in January, I was very cavalier about the status of my health. This was before the lumpectomy that was followed two weeks later by the mastectomy. The thought of chemo was a dim glimmer on the horizon. I was ready for a vacation.

We have the opportunity to take private rail cars to Chicago the end of April. I was ready to do it. We had hoped to take this trip earlier in the year, but it was cancelled. By the way, we are train buffs! We love to ride trains. Anyway, this trip came up. We talked to Dr Surgeon. He said it would be fine.

That was before the schedule for chemo every two weeks fell onto my life. Other than being really scared of the effects of the chemo, I am really afraid of how I will handle this trip.
I love the train and I love Chicago. Absolutely. But we board the train the day after a two day chemo treatment. How sick am I going to be? How tired am I going to be? How much of Chicago can I enjoy?

I booked the hotel room last night. We will be there for four days, and then return by Amtrak.

I so hope I am worrying without reason.

Ashamed

Sometimes, I surprise myself, and am proud of myself. But today the surprise is painfully embarrassing.

Yesterday when I was at the oncologist, an older woman and her husband came in. They signed in, and were greeted (which is unusual in itself but that’s another story) by someone at the desk.

They ascertained this was her first visit to the office. She was laden with a portable file folder and several manilla envelopes. She was asked if she had been mailed the volumes of pages that comprised the questionnaire for the office. She replied she had, then proceeded to search for it.
Naturally several of the envelopes fell to the floor. Her husband was still there with her at this time, and he picked them up. She put things into a hasty order, and they began to go over the form.

She has checked that she had advanced directives. When the clerk asked about them, she began searching through the portable file. The advanced directive was there, and she produced it. She then began looking for the Power of Attorney. It was not there.

As she became more distressed, her husband went to a couch, got a magazine, and sat down. She searched furtively stating that the original must be in the safe at her daughter’s house, but it had been filed at the courthouse.

She was becoming more and more distressed. I was amazed at the calm demeanor of the clerk. She was assuring the lady over and over that the document was not needed, just to ascertain that she did have one. The lady by this time was in complete "finding mode." She was going to find that document. She was going to stay there until that happened.

Smugly, I sat there thinking how glad I was that I had already signed in and was sitting in the waiting room!

My appointment went very long, That was mostly due to the fact that the lovely new hospital I resided in for the mastectomy does not really have their act together. Here we were ten days post op, and the report from that surgery had not been sent to the oncologist. That was the document he wanted - nothing else, and we weren’t going any further until he got it. Thank goodness for fax machines!

After my wait in the exam room of over two hours, guess who was at check out! Yep. Since she was new, they had ordered all sorts of other tests. I think she was going to have a PET done. She was so confused with all that was going on, and I guess loving husband was still on his ass in the waiting room.

I was so tired that I was a little upset that she was going to be checking out for a while. I knew from the checking in procedure. Sure enough, when she was looking over the paperwork, she came to NPO. I know her physician went over all this while she was in the exam room, but she didn’t know what that meant. They explained everything to her again. I signed internally.

Patients are beginning to pile up behind me to check out. I was not understanding - at all.
After we left, I brought this up to G. He put the proper spin on the situation. She probably has brain cancer, she was scared, and she had never had to deal with this type of thing before. We both remarked about how wonderful the staff at the oncology clinic handled the situation.

Now I am ashamed of myself. I need to be more caring about others . Cancer is a scary thing.

It's got a good beat

My dance card is going to be full for at least the next 16 weeks. I went to the oncologist today, and we set the chemotherapy schedule. I will be going every other week for the therapy.

So I went online, as all good computer savvy people are apt to do, to check on what was going to happen to my body. I was expecting the hair loss. OK, no real problemo. I was expecting nausea. Not pleasant, but then I knew chemo was not a walk in the park. Mouth sores. Now that caught my attention. I was really hoping those little devils would not be part of it. The drugs are going into the port, then into the blood. Leave the mouth alone already!

What really caught my eye was the possible kidney and bladder involvement that goes along with one of the drugs. So when I get that one, I get to go back the next day for fluids. What a deal! Two days at once!

Then I read the details of the other drug, It can damage the heart. I tell you, this cancer thing just keeps getting better. Now I know why I get to have an echo of the heart next week also.
But these things will pass. I can pretty much begin marking off the treatments from the calendar and look forward to getting back to my normal boring life. Things will be OK. I will live through it all, and I will be well. I just have some bumps in the road between now and then, but isn’t that what life is all about?

May you all have a good week!

That blasted fear decided to slip into my mind for a while today. Before my visit to the surgeon, I was petrified about having the drainage tubes removed. As for the staples - oh that was over the top!

But alas, I have a great surgeon. The tubes were not really comfortable coming out. He told me I had become sensitive to the silicon and was reacting to them. The alcohol DID sting - a lot! But they are gone. It feels so much better.

The staples were a breeze! No sensation at all. My sarcastic side sneaks up here to say - "yeah - more nerve damage, that's why!" I'm not really sure that is it, but I don't have the same longing/fear for the next appointment when the remaining staples go.

The bad news is that there was more lymph node involvement. I'm not sure if they found a total of two in twenty lymph nodes, or it was two additional ones. I am leaning toward the latter just by the demeanor of the surgeon to my daughter's questions.

That is a topic for the oncologist on Monday.

As well is the insurance company denying the $4500+ pet scan that was done before all this began.

But I am free of tubes. Free!!

I am finding it again - with your help!

Fear is probably the most insidious of the emotions we possess. It lurks in the dark recesses of our minds, growing, waiting. Fear is not alone there, however. It has its good friend, uncertainty, right there with it. Both are waiting for some small crack so they can slip their icy fingers around your heart where they bring the twins along - frustration and doubt.

Fear, doubt and uncertainty have been with me for a while. I let the fear grow. The uncomfortable body allowed it and its friends, escape into the light where they tried to take hold. And they almost succeeded. I was falling down a deep dark hole of despair. My light was dimming. I felt really low, and the self pity was rising. I was beginning to become very frustrated because I not in control. Well, I realize I cannot be in control of things now.

Then Busy Mom asked her readers to come over to give me a boost. I cannot express to you all what your comments meant to me. Thank you from the bottom of my heart. I am finding my resolve and bravado again.

And Busy Mom, I am so glad you escaped damage from the storm yesterday. I thought of you immediately when I saw the news. I am so distraught about those who lost their lives and properties in those storms

Later today, I will have half of the staples removed along with the drains (I hope since they have really stopped draining). I will carry your good thoughts with me.