Through a Lense Darkly

I hadn't heard from my oncologist. Usually he calls a week after my blood draw with information on my tumor markers. As of today, he hadn't called, so I called the office.

I was pretty sure they were up. They've been rising with mathematical precision...multiplying exponentially...In June, 98; now, 298. I had been hoping that they had dropped, that the Faslodex and Zometa were working. Nada. The oncologist is on vacation and I'm not due to see him until October. I'm due for another Faslodex injection in a couple of weeks.

I think back...what has changed in the recent past, in the last two years really which would have caused the cancer to come back and so virulently? Sleep? Yes, I've been getting less than I probably should, but what mother of a teenager doesn't? My diet remains good, and in fact, for the entire period of Lent this year, I gave up sugar.

Yes, I'm under a lot of stress. Having a 17 year old daughter doesn't make for the most relaxing of times. I think back too to when I was first diagnosed, and then with the recurrence. I remember begging God to just let me make it long enough for my daughter to be older, and not in so much need of me. Well, 17 would be that....and then I start being disgusted with myself. That kind of thinking is magic thinking....there isn't a higher being out there who is ready to snip the threads of my life just for fun.

It's easy to get into this kind of thinking. For most of us, there is no real known reason as to why recurrences, or even the initial cancer starts. There's nothing really we can do except to live our lives as healthfully as possible.

And don't let our fears and wild imaginations get the best of us.

Everyone's Experience is Different

Last Friday, I had my monthly Faslodex shot, Zometa IV, and check up. While I was getting my IV, the lady next to me was having trouble with her port. They needed to draw blood as they had accessed her port before doing all the blood tests she needed. The port was being obstinate. Material would flow in, but she couldn't get it to draw back enough to fill a vial.

Now, my port was often a trouble maker. Not really a trouble maker, but it was hard to access and sometimes I had to sing "Up on the Hill was a lonely goatherd...." with the yodeling part from The Sound of Music. It sounds silly, but it worked...and at least I had a decent voice so I could pull it off. This lady wasn't so inclined.

So, they had to stick her again for the blood draw. Is it my favorite thing? No. Is it do-able? Yes, and it is a necessity. I was amazed at how this lady complained and whimpered. You'd think she was having her arm amputated. I know how awful it is when phlebotomist doesn't hit a vein and digs around. But this wasn't the case. I'm also not happy when they put a catheter line in as that doesn't feel too pleasant either. But none of these warranted in my opinion her reaction.

Then, when I was in the room to get the Faslodex, the nurse kept on apologizing for the "stick" she gave me. Really? That is a tiny needle. I'm used to the big mamas they use to draw blood, access my port (when I had one), and put int he IVs. Big. Pokey. These little needles for injections are a piece of cake even though they do put in a lot of material and it is very thick. For me that is.

I was thinking about it and I realized that not everyone can handle pain. I know I have a high tolerance...at least it seems so as I don't complain about much...it has to be really bad before I do. So, I have to remember that others have low tolerances for discomfort.

I really feel sorry for them. I promise I will try not to be judgmental at the yelps and whimpers other people give.

Random thoughts, Random issues

Daylilies only bloom for a day. Too bad most of us don't think about that earlier in life. Today, my husband and I went to the Miami County Fair, after I had worked in the garden for about three hours.

I didn't think I did all that much...I dug out two perennials, hauled in some soil and back filled around the pond, and planted 4 new perennials. Then, I mulched it.

As far as my normal gardening days go, this was really light. At the fair, we walked around for a couple of hours. By the end of the time, my hip was really hurting. I realized that perhaps I needed to really concentrate on losing weight so that the joint isn't under so much pressure. I also realize that just possibly this pain won't go away over time and I won't be able to be as active as I once was. I don't think I'll ever be able to run again and I don't even think that hiking, something my husband and I used to do before my daughter came along, will be in the picture. Thinking of myself wheelchair bound is just not something I ever considered, not that most people in their pre-30s ever think about something like that.

But, that might not be the case either...even so, it is sobering. It is possible, that if I survive this recent go around, I will just have to be careful. I'm not sure about if the damage or pain I'm having now is directly related to cancer, or if it is as a result of my loss of estrogen at age 38, the calcium issues (loss) from chemo, and the damage to the area from the high-dose radiation. In addition, because it was the acetabelum (the cup in the pelvis which the rounded head of the femur rests in) it is possible that it is just the problems associated with a break in that bone (nerve damage, muscle issues as well as pain because that part bears so much pressure).

I have decided that whenever the hale and hearty male friends of my daughter show up to go swimming, I am going to make each one of them dig me one hole...or do something else which requires putting foot to shovel. One of her friends offered to help me when he found out I had cancer...but never showed up until I messaged him on facebook (I don't think these kids know how to communicate other than texting or facebook) and asked him when and how much. $10 per hour, and three hours of labor I got some of the things done, but I have about 2 hours more of work to do.

I find it amazing that although these kids don't have jobs for the most part, or if they do, they are for a few hours rather than during the daytime, that I can't hire them for a bit of work. Now, I know that this sounds like I am an old fogy, and I suppose I am, but I worked for less than minimum wage when I was their age. I am amazed that making $2.50 per hour OVER minimum wage won't bring them in....and when I say digging, I don't mean hard digging....if it weren't for my hip, I'd do it myself.

I'm about ready to pick up someone who sits out on the highway exit with a "will work for food" sign....if it weren't so scary to do that..... Maybe hanging a "handicapped" sign off the end of my nose, or as a medallion on my neck might do. At present, people don't know there is anything wrong with me....My daughter suggested that I get an handicapped license. I would, but I don't need it ALL the time...just more than I'd like to admit. It is nice that she thinks about where I'm parking and how I hobble at the end of the college campus visits we make. Oh well, at least I'm still taking in breaths. ; )

Why I blog

Not too long ago, I received a comment on this blog asking me to fill out a survey about breast cancer blogs. Being the sort of person I am, of course I went and completed it.

One of the things which struck me, however, was the apparent supposition that the person who blogs about breast cancer is to illicit support, inform people of their own particular current issue, that sort of thing. I didn't see anything coming through the questions as far as the reason I chose to blog.

I started this blog because I knew of very few people who had had Stage IV breast cancer and survived, and I don't know anyone who has had it and been around as long as I have. That's not to say that they aren't out there, I just don't know of any.

I also wanted to give people hope, especially for those who have been recently diagnosed. Of course, there are those who follow this because they do know me or that they know of someone else who has been in similar circumstances.

Since being diagnosed with my own recurrence, I have often hesitated to post about my current struggle. I just didn't want anyone to get depressed that I am now going through this too. I still struggle with that...but I also see this as an opportunity to tell about how the drugs are working on me, and some of the things I have found out as once again, I'm going into an area where I don't know of anyone who has been in similar circumstances to me.

So...I'll continue...until I think that I don't have anything pertinent to share, or it just becomes too hard. Rest assured, if you don't hear from me for a while it is probably that the job of raising a teenager, keeping a household running, maintaining my own business, gardening, and all the other things I do have been interfering with the blog. :)

Sometimes doing the right thing leaves you exposed

I've written before about the Army of Women posting a research study for young women who were diagnosed with breast cancer. You had to have been under 40 and pre-menopausal. This was one of the first studies that I have ever qualified for, and something I really wanted to participate in.

I was especially interested as there had been no breast cancer (or cancer of any type) in my family up until me, and then my sister who is 7 years my senior was diagnosed with it about 5 years after I was. I want new information to come out and hopefully treatments/preventative measures so that my two nieces and my own daughter don't have to go through what I have.

I also thought it would be good as my mother and father are both living and both are in their 80s. The combination of my sister and my parents just might give some insight into why this happened.

I filled out the permission forms and the history and had blood drawn and sent off to Washington University in St. Louis. It was not without some trepidation that I filled those papers out. You see, there isn't anything to protect me or my daughter from having insurance companies in the future deny her treatment based on genetic testing information which might show her to have some sort of gene abnormality which would make her at risk for getting this disease.

I find this a travesty. I didn't like it, and I know I am putting her future at risk, but I feel that I'm putting her future at risk if I don't step up to the plate and participate. We should be protected. No one should have this being held over their head, particularly if one is being penalized for doing something for the greater good.

In addition, even with a positive genetic factor, it doesn't mean that a person who has a gene abnormality which is connected with cancer has a 100% chance of developing the disease. For some unknown reason, sometimes these "triggers" are not tripped. But I certainly want to put a bullet in this disease. I guess I'm going to have to write my congressmen, but I feel like it won't go any where.

Not Every Cloud Brings Rain

Imagine that there is a watermark on this picture....for some reason I'm having trouble with Photoshop getting the watermark to stay. grrr.

This week has been a little tough. Not only have I been having pain in my hip, but yesterday I started to have some discomfort in my ribs as well. Toss in the fact that I also discovered that I have Lyme disease (and am now on antibiotics but feel tired and often dizzy), its been a little rough.

Usually, I keep my head about things, but the rib thing really made me a little nervous. Since I couldn't remember how much calcium and vitamin D I'm supposed to be taking (I finished the bottle and threw it out and then talked to my sister who is taking LOTS of both) I decided it was time to call my oncologist and ask him about the dosage and also to give him the heads up that I was feeling something in my ribs....which is one of the locations of the new metastases. I figured that would give him some time to think about what to do next if the Faslodex wasn't working.

He called me back within a couple of hours. and told me that for some reason, even if Faslodex is working it doesn't usually show up right away. He said that he new of cases where they had discontinued the drug, and then two months later they saw improvement. He also said that he has had very good results with his patients on this drug and didn't have any bad cases to report, but that he had several patients who had been on it for 6 years and were still doing well.

Ok...so why don't we know about these things? I think part of it may be that quite often what reporters and the media are looking for are cures. What Faslodex does isn't curing cancer, but making it be a chronic illness. Just another case of keeping us patched together until we can find something better.

I'll take it. And I'm very grateful I have a doctor who is willing to listen to me and to give me encouragement even when things look rather dismal. I'm not usually one to jump to conclusions. I'm also not one to always look totally on the dark side. However, since I have only known this doctor for 4 years, I never know how his office perceives me.

The Tattooed Lady and other laughs

The road for the cancer survivor is often long and bumpy. However, it isn't without giggles...at least if you look for them. Today, I actually experienced a new giggle.

Every year, I try to go and get a full body check for cancer by a dermatologist. I decided that I would switch to the local guy my daughter has been seeing.

When I received radiation therapy to my breast when I had my first bout with breast cancer, I was tattooed, 4 (or 6, I can't remember) little black dots were put on my breast in order to mark the coordinates for the radiation beam. (I asked them for a mermaid, but they said no, that was a little over the top. Darn.). Ordinarily I don't think too much about them. In fact, when I had my mastectomy, some of them were removed with the breast, but I still have two small dots.

When I was at the dermatologists for my first exam with him today, he looked at me and said "What's with the tattoos?" Uhhh...well, you see, I was going to get a mermaid, but I chickened out after a couple of dots...." Yes, I really did say that...but I followed with the real explanation.

I told my daughter when I got home about the exchange. Her eyes grew very wide.."You have a tattoo???" she asked incredulously.... I told her yes, but they were top secret dots. For a moment, she almost thought she had a really cool mom, but then I had to go and spoil it for her and prove once again that I'm not cool, just an aging nerd.