Quick update.
I had full CT & MRI of brain & c spine last week.
There were a few we’ll call them “minor” things they could see, such as the areas I’ve had trouble with for years, spots on lungs, plus herniated discs in my neck. They also uncovered a spot on or near thyroid which has doubled in size (in 2 months) since August. I’m going in this afternoon for a scan to evaluate that spot further.
How am I feeling? Ok. I’ve never complained much over the years and just lived with pains, but am learning how important it is now to tell the doctor. Getting around has been progressively harder in the past month. Feel like a 90 year old woman shuffling around when I get up in the morning or get up from sitting… driving in the car… I have numbness which has gotten worse… there’s pains when I try to go to sleep at night… fatigue is up there as well, often times I just need to drop right where I am, which really sucks if I’m in the car… but I’m not puking so I consider that a very good thing.

And you’ll all have to forgive me if I ask you the same question over and over, or forget you told me something. I’ve come to the realization “chemo brain” has a meaning I really never expected could run so deep. I’ll ask my daughter a question and she’ll say “MOM! You JUST asked me that. TWICE!” Which I never realized. Because I sure didn’t remember the answer. Or someone will say, “I TOLD you that.” And I can’t sit back and recall it to say “oh yeah, I remember now”. Because I seriously have no recollection of that conversation.

I sure hope these are all things that will improve!

So if you see me and ask how I am, I won’t go through the whole routine… I’ll tell you what my grandfather always said… “I’m still kickin’!” …And for that, I give thanks.

Hope you all have a blessed Thanksgiving!

I was feeling particularly pissy with my husband the other day….

I heard a line form a movie that sums up how I’ve felt the last couple days, including this morning.
From tired wife to her husband: “You don’t need ME to meet every single one of your needs at the exact moment you need them met!”

He has been walking around for DAYS saying, what do we have to eat? Instead of pulling out great leftovers and popping them into the microwave, he wants me to do it FOR him. At times I enjoy doing it for him. Other times, I just don't have the oomph to.

===== Any way I slice it, what I wrote here wasn’t nice. It didn’t reflect the person I am or want to become. So I have removed the “husband bashing” portion. A couple people caught it before I retracted.=====

He hasn't gone through grueling cancer treatments that may or may not work. How could he rank that?

I was about to yell at my husband and tell him I have the ultimate excuse. I have cancer. That’s a damn good excuse. Yes. Damn good. Then I realized, perhaps it’s not the ultimate excuse. Things could always get worse. They REALLY COULD.
I still have all my limbs. They still function. Though it hurts, I can still walk. We still have a roof over our heads. We have a beautiful, smart, loving daughter. I’m still married to the man I was attracted to at the age of 13. He doesn’t have an abusive bone in his body. He’s an animal lover to the hilt. He truly loves and cares about his family. Men just have a different way of showing it. He is a joke cracking, belly laugh funny kinda guy, friendly to everyone. He always does something to make you forget instantly that you were even infuriated with him in the first place, which reminds me why I love him. And I feel guilty about even thinking things like this, much less writing about them. He works hard. VERY hard despite his back problems. He takes out the garbage and does his own laundry. Even though he ticks me off, I still love him and wouldn’t want to be with anyone else. I still have my loving and supportive mother. I have damn good in-laws (sorry I’m bitching about him!)

In the beginning, the initial shock, he was fantastic. Now that he sees me walking around and talking, he thinks everything is perfect great. No pains, no sickness, I don’t need help. I think he just needs a bit of a kick in the pants. Instead of dwelling, HE is trying to bring as much normal to the situation as possible. How can I bash him for that?

More Tips to Avoid Lymphedema:
Activity / Lifestyle

· Gradually build up duration and intensity of any activity or exercise.
· Take frequent rest periods during activity to allow for limb recovery.
· Monitor the extremity during and after activity for any change in size, shape, tissue texture, soreness, heaviness or firmness.
· Maintain optimal weight (uh, ok)

· Avoid extremes of temperature
· Extreme cold can be associated with rebound swelling or chapping of skin.
· Avoid prolonged exposure to heat, particularly hot tubs and saunas (less then 10-15 minutes)
· Avoid submersing limb in water temperatures above 102°F

· Avoid limb constriction
· If possible, avoid having blood pressure taken on the at risk arm
· Wear loose fitting jewelry and clothing

Tips to avoid Lymphedema
I visited a Lymphedema Clinic where I was fitted with a sleeve and hand cuff to be worn daily for 3 hours especially during radiation and healing time. (Mind out of the gutter people. Cuff for the hand. Not “Hand Cuffs”.) I was surprised to learn of things I should not do. Like, carry my purse on the affected arm or use the affected arm to open the door and NOT carry the groceries. Not a lot of horseback riding, because of gripping the reigns. There are rules we need to follow for skin care, change in activity and lifestyle, clothing and other things that should be avoided.

Avoid Lymphedema - do’s and don’ts:
the top 2:
1- NO NEEDLES in affected arm – avoid any punctures possible
2- NO BLOOD PRESSURE is to be taken in the affected arm.
(of course if you are in an accident, and they MUST use your affected arm to help save your life then they must.)
Avoid Trauma or injury & good skin care to help avoid infection risks
· Keep affected arm clean and dry
· Use moisturizer daily to prevent chapping of skin
· Use caution with nail care, do not cut cuticles (if you get manicures, you need to be REAL SURE their implements are sterile & no cuticles are cut – I think it best just to not have it done.)
· Protect exposed skin with sunscreen & insect repellent.
· Be careful with razors – avoid nicks & skin irritation.
· Wear gloves during activities that might cause injury to skin. (using chemicals, detergents, gardening, using tools etc.)
· If you get a scratch or puncture to the skin wash with soap & water ,apply antibiotics, and watch for signs of infection, such as redness or swelling etc.
· CARRY WITH YOU always alcohol wipes and Neosporin or equivalent. If you get a scratch while you are out and do not have access to soap & water and antibiotic , you can take care of it right away.
· If a rash, itching, redness, pain increased skin temperature, fever or flue-like symptoms occur, contact your physician immediately.

MORE TIPS to avoid Lymphedema next time….

((NOTE: I am not a doctor. The information in these pages were suggestions given to me and not intended to treat you or anyone or to replace the advise of a doctor. Seek your doctor’s advice ALWAYS.)) (( most info from NLN ))

Living Proof
I watched “Living Proof” on LMN about the doctor and his development of the cancer drug Herceptin, with my mother. Swoosie made me cry when she displayed a torturous agony of desperation while BEGGING the doctor to help her daughter. He knew the drug worked on the daughter. She knew the drug worked. But the funding entity did not allow room for continued treatment for her in the next phase of the study. You could feel the distress and misery of a mother, desperately wanting to save her daughter. Of course I was teary eyed when Bernadette received her good news that she was cured. But it wasn’t easy watching as time went by those treatment chairs become empty from the deaths occurring.
While the movie did illustrate difficulties in getting a good drug pushed through the system, I don’t think it quite captured the severity and true nature of what the doctor really goes through to get it done.

Radiation is finished
Yesterday at my Oncologist appointment, I informed him of the pains I’d been having not only with “the girls”, but in my neck & head as well. (I’d told the other doctor & his nurse about it, but they kept telling me, “it’s just a healing process”. I’d had many surgeries, I feel I know the difference between healing feelings and the pains I’d had prior to diagnosis. I in fact am having the healing pains along with the others.) So when I told my Oncologist of these recurring pains that they were gone all through chemo but came back 3 weeks ago, he took me seriously. He ordered a slew of scans including a PET (soft tissue) neck & brain scan (which had not previously been done). Oddly enough, our insurance company covers that test in all states but 2. Ours (Illinois) being one of them. The doctor’s assistant called me and said she is fighting them on it because federal law says they have to cover it. They don’t want to cover the bone scan because I’m too young, how can I possibly be post-menopausal? Uh, Duh, you guys paid for the surgery that put me in post menopausal state permanently. She’s fighting that one too. The bone scan needs to be done because the inhibitor medication I’m on now accelerates osteoporosis. We’ll see what happens with those two, but in the mean time, I’ll be having the other scans on 11/18. MRI & CT. Hopefully by then, the feeling like I’d just had chemo again and my entire body is in pain and relentless fatigue, which returned the last couple days, will go away.

Feeling The Burn

I guess there’s two burns.

Radiation. (pictures below if you want to skip down with out reading)

And it seems Bobby’s night job is coming to a close. Sounds like the rest of the building is done. Thanksgiving or Christmas and he should be done there. So, that burn is on him.

I frequently am asked if I'll return to work. I want to. I enjoy working outside of the house. Yet there is a big part of me that is absolutely terrified I'll be wasting precious time sitting behind a desk when I should be enjoying my family while I still can. But I may not have a choice in that matter.

Radiation is almost over. Then a few doctor appointments and I start on medication to…. Help…. Prolong….. life…… (damn. That is really hard to say. Prolong.) With all the turmoil of driving to various therapies on a daily basis coming to a close, I sit back and think…. What do I do now? I’ve grown accustomed to this new way of life and I don’t know how to act anymore. I don’t know how to be normal anymore. I don’t know what normal even is anymore. What am I going to do? What am I supposed to do?

I’m heading into new confusing waters of the unknown. Where there are no guarantees.

Effects of radiation…. so far
Draw backs, yes. Especially with the price of gas. Thank God for all of us it has come down almost a dollar in the past weeks.

The pictures below show the burns that occur with radiation. Yes, they give you cream. It’s more a regular lotion with an oily feel to it. Did it help? Maybe it would have if I was a bit more diligent with it. I used it couple times every day, but that’s just not enough. Perhaps it’s the dose I received.

Does it hurt? It was uncomfortable, and now hurts more. Especially when the seat belt hits the spot on my shoulder. It’s not like a sun burn. It’s more like…. Have you ever scraped a large area of skin off, almost like road rash… forgot that scrape was there, touched it and it hurt in a burn sort of way? Or washed that area and it burned? It feels more like that. There's spots where it hurts to the bone.

But, I’ll take radiation any day over chemotherapy. Hands down.

Aren't I embarassed about showing everyone the girls? Showing boobs doesn't seem bother me as much as posting my face on the internet. Actually, it's really amazing the things we get used to. A lot of people have looked at the girls in the past 9 months.

October / Breast Cancer Awareness Month

I know we are all actually aware of breast cancer.
But what I never realized is it is a cancer like other cancers.
I thought it was just in the breast. You get it taken out or the breast off and you are done with it. However that is not the case. It can spread. It spreads to your lungs or brain which is a natural pathway through the lymph nodes and how they drain. It travels into the bones or to any distant organ in the body. One that is necessary to be alive. There are also different types of it, different receptors etc. Some are cured, if you are lucky, after enduring grueling and punishing treatments. Many are not.

This Saturday, on Lifetime Network (I don’t usually watch Lifetime) is a movie based on Dr. Dennis Slamon (portrayed by Harry Connick, Jr.) detailing his hand in the development of the drug Herceptin. This is the drug they use on breast cancer patients that are HER2/NEU positive. Not long ago, being HER2/NEU positive was a hopeless death sentence. I’m 0.2 points away from being positive for HER2/NEU, so currently I won’t be receiving this drug. Today, doctors actually consider it a good thing to be positive because this drug WORKS. Anyway, the movie, “Living Proof” showcases the difficulties in getting this drug passed for a clinical trail, and the struggles of the first women to take it. The cast is an interesting out of the ordinary mixture and could prove to be quite powerful, among them Bernadette Peters, Amy Madigan, Regina King, and who doesn’t love Jennifer Coolidge or Swoozie. (At times Swoozie looked a lot like MY MOM).

"LIVING PROOF" - 8 pm / Saturday October 18th.

Lifetime Movie Network

My next posts I hope to share pictures of radiation effects (burns) to explain how that is all going, and share what I've learned about lymph nodes & lymphedemia.

THANKS FOR STICKING WITH ME DURING THIS.... JOURNEY.

Photo yesterday

Took a couple of photos yesterday at radiation. I have no clue why I'm smiling. It just doesn't seem like a smiling situation, but these technicians are a gentle and fun bunch.

They play music to help entertain you while you're in there by yourself.... You have to hold still, so you can't tap your toe, but you can smile. And HEY, who wouldn't tap or smile when you hear the BeeGee's that you haven't heard in ages?

Rads & Revelation

I have begun radiation. (The hip term on-line is "Rads") 5 days a week for 7 weeks. 7 down - 26 to go. I think today I'll try to get some pictures off for ya'll. You lay on this table similar to what's hiding in the basement of hospitals in the morgue, where you are pulled out & pushed in. Only you don't get locked up behind a door. You get pushed toward an interesting robotic like machine with arms that swirl around you while you are watching a reflection of yourself with a grid of green lazers on your body. Almost like something from "The Matrix"with Keanu Reeves or "War Games" with a young Matthew Broderick. Right when the machine starts making noise a handly red warnnig light goes off and starts flashing, reminding everyone else to get the hell out of there should they have wondered in, I guess.

I’ll be heading into a Lymphedema Clinic as well, which is supposed to be an every day thing too. Yee haw. While all this driving around is a headache and a costly gas guzzler, it is certainly not as bad as chemotherapy. Sure, there are side effects, but at this point, I’m just happy chemo is over.

I did have a revelation the other day….
As I was waiting for my GYN/Surgeon doctor to come to the room for my 2 week follow up to my recent surgery, I realized HOLY COW I need to start shaving my legs again! I haven’t needed to shave my legs in 5 months. That’s certainly all I’ll miss. Of all times to realize it though. At the doctor’s office.

We've all seen the e-mail joke that's about 15 years old of the woman that went to her GYN sporting glitter from the bathroom washcloth.... I'm sure some of you have comments about experiences like this. Lets HEAR 'em!