Confusion

 I know it's been so long since I've written. I've been in a whirlwind of confusion an honestly, I just haven't been able to get myself to write. I do better mentally when I keep myself distracted, so sometimes writing about it makes me focus too much on it. Although, writing about it seems to be a form of therapy as well.

Here's an update as of my last post.

December 4th I had bone and CT scans.  They came back mostly positive.... He saw some calcification on my liver mets which means it's dying. bones were stable, no new mets and overall looking fairly good.

A few weeks later, I woke in the night with pain in my right side (liver) It was bad enough to keep me awake. The next night it happened again and when I turned, I had a sharp stabbing pain there,

I called the the Doc, but, of course, it was the week of Christmas and he was out for the week. His "fill-in" had me get an ultrasound on my liver.  So a few days later, Christmas day, I saw the report on my patient portal and it said I had a new lesion in my left lobe that wasn't seen clearly on the prior CT scan and it seemed my right lobe tumor had grown significantly, but the radiologist and later my Doc. said it's hard to say because of the different machines used. CT vs. ultrasound.  So I just went in a downward spiral emotionally. My thoughts were all over the place. Xeloda had stopped working, nothing is going to work, you're going to die this year. Just really negative and hard as I tried, I couldn't seem to help it. I did all the things I know to make myself come out of the hole, but I just couldn't. Finally, a priesthood blessing has helped the most.

So this is where all the confusion comes in.  After looking at my ultrasound, etc. on Jan. 4, he wanted to see my tumor marker numbers.  When we looked at it, one had come down a bit and one had come up a bit. So he's thinking that Xeloda is working for everything except liver, so wait until Feb. and see the numbers and then we'd possibly do radiation on the liver.  So this has been my state of mind for 3 weeks.

2 weeks ago, along with the discomfort in my right side, I started getting new pains. twinges, discomfort in my left abdomen. So that is NOT liver related.  Now my mind started going to "Oh it's spreading to my spleen or pancreas and it's spreading all over my body super fast ( I had a friend that died within weeks of finding she had cancer, so I get scared it's going soooo fast)

So my appointment is still a week away, but this morning, needing some peace of mind, I called the nurse....which I had to call anyway to check on my insurance and order labs, etc.  I told her of the new pain and if it's something he would want to see me earlier for or ???????

So she looked at my scans and my bloodwork and said both my markers were down considerably.

So in confusion, I just checked my patient portal and it does show both of them down and then the graph that you can see kind of skips over the last numbers as if they're not accurate.

So, yeah I don't get it and I don't know what's going on in my abdomen, but I feel a bit better mentally seeing the new marker numbers but confused because it's different than what we talked about with him 3 weeks ago.

So, here I am reporting the details and where I'm at.  I still have side effects, although Esplin lowered my dosage. Things are just a little bit better in all the areas. Still annoying and I hate all the side effects, but just a tad bit more tolerable.

Hopefully, I'll be good and update after my appointment next week.

p.s. my hair is filling in nicely. I look like a boy, but that's progress!

Longest appointment ever

Yesterday we met with Dr. Esplin and he talked with us for an hour and a half! I didn't think Doctors did that?  It was awesome and we were able to ask all of our questions....at least the ones we could remember.

I go in for weekly blood draws and also did one right before we talked with him and I'm happy to report that my white blood cell count is holding pretty steady and doing really well. Some people don't do well with these meds, but I am doing quite well.  I have started getting a rash on my right elbow and the backs of both of my hands that itches like a dickens. It almost looks like bug bites. Unfortunately, I only had the elbow ones when I saw him and didn't think to ask him about it. After the appointment the rash went all crazy and I was itching. I googled Tamoxifen and rashes and although they don't say it's a side effect, the people taking it do.  I'll try some hydrocortisone cream and see how it works until I can call on Monday.

So I took a list of questions and I'm going to type them all out here so I can remember the answers

Can I see my PET scan? Yes, however they still haven't sent the actual visual scan. It's been requested.
Do you know the number of tumors and how big they are? He gave us a printout of the report, but it only mentions the more "troublesome ones"  not the little ones.
Findings:
* Head: No abnormal focal areas in the brain, lymph nodes in the neck, or thyroid.
*Chest: Heart is normal, tumor measuring 1.2 x 0.9 cm in cervicothoracic junction (which all I can discover is the place in the chest/neck whre the cervical spine meets the thoracic spine. I don't know if it's in front or back???
Another small tumor in the lymph node of the prevascular region ( front part of chest between the lungs)
Multiple lymph nodes in left axilla all different sizes (arm pit  directly under the joint where the arm connects to the shoulder) This has to be one of the ones that is causing me so much pain.

left Breast: No duh- huge mass, thick skin

*Abdomen and pelvis: Tumor in the right lobe of liver 2.3 x 2.3 cm  Two tumors in lymph nodes of the porta hepatis (a deep vein thing inside the liver) hard to view, but size is approx 1.6 x 1.4 and 1.0 x 1.5 cm

simple appearing cyst in right ovary and in the endometrial canal of the uterus

Musculoskeletal: Extensive tumors in axial skeleton -tumors seen involves the spine at multiple levels, rib cage, sternum, scapula and pelvis)
Right and left femurs and some other places along the femur. I can feel the one on the right. It sometimes makes me limp.
tumors on T2 vertabrae, L1 vertabrae, upper sacrum

I must light up like a Christmas tree.

How often will I have a PET scan? In the beginning every 3-4 months and the next one will be a PET scan, but after that, we will alternate between PET and CT and bone scans. My next one will be in June.

Should I have my ovaries removed since they produce Estrogen?  If I was stage 1-3 possibly. Stage 4 no. for one, it really messes me up and causes a lot o problems while I'm dealing with this other stuff and 2- It hasn't shown to really help.

What is a targeted treatment?  ibrance is a targeted treatment. It goes and finds certain proteins in the cells and targets those.

What does Oncotype score mean and should I know mine?  Doesn't apply when you're in stage 4

Are there other things I can be doing? I don't feel like I'm doing enough? This is the absolute best thing to be doing right now. We're giving you the best.  Again we're in for the long haul. If we beat you up now, your body won't be able to fight well later.

As much as I don't want a masectomy, wouldn't it be good to cut off the mother ship? In some cancers like kidney cancer it works. In breast cancer, it doesn't really seem to help much and it's hard to heal from the surgery.

Is it really possible to live a long life? Yes, however, I can't tell you how long that will be.  For some it is a year but I know of a woman who is on her 27th year. Everyone is different. We just don't know and we take things that come up and deal with them and switch things around.

I really hate that answer. I just want to be guaranteed that I can live even a decade. In other words they just don't know. It is literally one day at a time and will be for as long as I live. He does say that the meds I'm on now, if they are working now, will eventually stop working. and we will switch to others.

He gave me some stronger pain killers for my shoulder.

As for how I am doing emotionally?  I still have my moments and they are often, but I think I'm settling in. There's not much else I can do. He reassured me that his job is to keep me living and to really live.  Even though I hurt and feel old, I am going to try to do just that. Live.