Second cancer….

The thyroid is an interesting creature. I’m amazed at not only the location and shape of it, but all the major functions it is responsible for regulating. It is a butterfly shaped organ, located at the base of your neck, under the adam’s apple. In short it controls the speed at which the body’s chemical (metabolic rate) functions. It affects things such as bowel movements all the way to heart beats. I’d love to delve into it more, but the learning part of my brain is tapped out. I’ve learned more then I ever cared to about other cancers and I so need a break. You can find more information here…. www.cushings-help.com/thyroid.htm or here http://www.mythyroid.com/

Scan results picked up THREE nodules / lesions so far… ((UltraSound scan picture below))
I fought for a week to get an appointment with an Endocrine doctor. Which I finally got at the last minute. They called me in the late morning as I was going out the door for another appointment to come in just a couple hours notice, being an hours drive away. I jumped on that! I brought copies of my Ultra Sound scans with me. While my mother will understandably cling to a diluted of version what she read (which I completely understand), the doctor was able to view the actual scan and determine that I do fall into the "5% of all patients" category (and 75% of another category of radiation patients) and have cancer in my thyroid. Thankfully he doesn’t feel it’s something I have to be overly alarmed about at this precise moment. It doesn’t appear to be the most aggressive type at this point. He believes it to be Papillary cancer (which is still a carcinoma). I will be having a biopsy this Friday. The office doesn’t think they will have the results for at least a week, which seems like an awful long time to me. Thyroid cancers can like any other cancer, spread into the lymph nodes and/or metastasize into nearby tissues, including lungs etc. But I am breathing a little easier with the impression that this may be a slower spreader. I may be able to enjoy Christmas yet.
(of course, I’m finding biopsies of this nature may not be very accurate. What does one do with that information?)

In case anyone decides to argue or challange the doctor findings, below is a synopsis what was on the report AND an actual US picture of my thyroid.

Scan report: "At least 3 nodules in right lobe – 2 = hypoechoic solid mass w/ coarse peripheral calcifications & suggestion of microcallcifications \ 1 = cystic appearing w/ bright internal echo."

ALSO - Please say special prayers for Chuck & Rosie and their family. They could use a boost of good!

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!

Visited the Radiation Oncology office again.
Silly me, I thought I’d go in, they’d tattoo me up & I’d start treatment tomorrow.
Doesn’t work that way.
Wednesday, took CT scans using lasers located in 3 different places of the room. They marked me in a couple places for the potential areas of radiation, which is merely the first phase of the “planning process”. A nuclear physicist has to look at the scans etc, make more plans etc…. then I go back and they match me to the scans and the plans. I THINK I get the tattoos then. (yes, just got the call. I go in Monday to confirm markings & get tattooed. Tuesday I begin radiation.)
They call it…. “3D Radiation”
Scary things from radiation…. lowered immune system (again)
Boob swelling, or shrinkage…. I can handle that. But it can also cause lymphedema in my bad arm, and it can cause a condition in which the lungs swell & it acts like pneumonia, but must be treated differently. It can happen right away or 10 YEARS down the line. wow.

She’s Out Ta Get Me

Short version:
My anesthesiologist wants to cause me bodily harm, but at least I woke up from surgery. Surgery went ok. “They’re” gone. I’m walking around. If the chemo didn’t put me through full blown menopause (which I think it did but started reverting) then I will certainly be now. So watch out! I have a license to be double bitchy and nasty if I wanna be. Well maybe not a license, but at least I have a plausible scientific excuse for my “uncontrollable behavior”. How am I feeling? I’ve felt better, but I’ve felt much worse. Itching to get out of the house, yet still lacking energy.

She’s Out Ta Get Me

Long Version:
Made it through surgery, even though the know-it-all anesthesiologist has it in for me. I don’t think it’s just me. I think it could be any cancer patient. Freud may say “she is disgruntled and harboring inner bitterness at anyone with a case of cancer she may perceive as more severe then her own, thereby making herself feel inferior to others. To counteract that, she demonstrates her own power of authority by doing what she wants even if she knows it is incorrect or detrimental to someone else to make herself feel superior.” – She volunteered the information that she decided to stage herself at a stage 3 (because she had 4 lymph nodes removed not just 3…) yet she didn’t take into consideration all the other factors of the staging scale, like the type of cancer, aggressiveness of the cancer, how far from the tumor the cancer spread, if at all (which she said hers didn’t)…. She just decided to stage cancer by herself not giving any consideration that doctors that handle this all the time and know how to follow a chart of staging. So she staged herself. Now, the difference between her and me that I know is, she had 4 nodes out. I had 30. There are approximately 20-30 nodes under the arm. Lymphedema is a huge factor for me. For her, not as much. Basically, I have none left. She is missing 4 and still has some in there that should be able to perform their job (however she IS still at risk). First rule of thumb when lymph nodes are removed = No Blood Pressure or Needles. Ever. (unless you get into like a car accident and rip your other arm off, then it’s ok. And I hope you remembered to put on clean undies like momma always told us.)
All that information, though boring it may have been to read, is important so you can understand why this woman makes me extra upset.so.......... 1st time out with this anesthesiologist, disregarding the pink limb precaution hospital issued bracelet, she absolutely insisted the IV must go in my left arm. Saying, oh well…. It just isn’t working anywhere else, after stabbing my other hand & my foot/ankle 5 times each and not getting anywhere with the IV needle. Everyone else only stabs twice & calls for someone else to try. She says it must go in my bad arm. She promised she would remove the IV soon as the surgery was over. Which she didn’t do. She left it there, never showed up again, and I had to ask the nurse to take it out sooner then when I’m leaving. )A week later, my arm began to swell slightly. Not hugely noticeable but I felt it in my wrist (& when I put my wedding rings on) and in my upper arm, which is quite irritating to the skin. This will never go away. I have “bingo wings” forever. Any other medical personnel when told this story, their eyes bug out of their heads and yell at me “they CAN’T DO that!” and I say, “but she did”. “But she CAN’T”. Everyone seems to know this but her. This time around…. She is prepping me for her part of the surgery, tying me down to the arm rest thingies attached to the operating table. As I feel the tightening, which seemed unusually tight, I look over and see she’s finished putting the BLOOD PRESSURE CUFF on my LEFT ARM – WITH THE BRIGHT NEON PINK WARNING BRACELET clearly on only 12” away! Her back was to me and she was getting ready to turn flip the on switch when I had to tell her loudly “WHOA WOAH WOAH!!!! NOT THAT ARM!!!!! GET IT OFF! GET IT OFF!” She quietly and matter of fact-ly in an annoyed tone with the little-miss-know-it-all-fashion (which seemed more like a ‘damn you caught me!’ kind of thing) “What? oh, I just noticed that”. DUH!!!!!! That thing inflates like every 5-10 minutes. This is a HUGE mistake which would have had seriously damaging effects. “Oh. I just noticed that.” What the hell? It sounded like a really out of place, unnecessary bad line from a move. As a hospital employee, wouldn’t the first thing you look for is the bracelets placed on the patient as part of YOUR REGULAR Warning PROCEDURE? Make a point to look at the bracelets? It’s obvious when they are on. They are such a bright neon color. Does this stand out?! You CAN’T miss them. It’s a damn good thing I noticed it! Or I’d be looking like this soon.....

She also ordered a shot for me that I’ve never had for a surgery in my life. And I’ve had quite a few surgeries. Something that “makes your mouth dry” said the nurse. I asked if I really actually NEEDED it, I’d never had one before, and I’ve actually been battling a slight dehydration, which I was just finally starting to get over. She said the anesthesiologist ordered it, it dries you up because the anesthetic can make you moist, and quickly gave it to me in my arm… Obviously, no medication actually targets a place like “just your mouth”. Instead, it goes through your entire body. Thus causing not only my mouth to be super dry (and we’re 8 days out now) but my tongue & gums to be super sensitive, plus my insides hurt again like they did only a week after a chemo treatment. And I was FINALLY feeling better. I was really hoping I could hang on to that good feeling for a while before radiation starts (which I’ve been told also has adverse affects on how you feel, not as awful as chemo, but crappy just the same.) But NOoooooo. Thanks-a-lot… Dumb Ass. Damn it.

Thanks for telling ME

I just found out “he” isn’t performing my surgery. He is having an “assistant” there. But the “assistant” is doing the surgery. Which is ok with me I guess. When I visited the doctor last week, I wondered how he’d do with surgery because his fingers, although not bent, seemed swollen with arthritis. However, I’m not happy that he didn’t even attempt to mention to me that he wouldn’t do the surgery. I found out from the pre-surgical admitting nurse! Ya know, I wasn't fond of him 22 years ago, and now I remember why. And the comment while discussing accidently slicing the kidney tube thing or intestine followed by "knock on wood" didn't help me feel any more comfortable.

Hopefully, the assistant who isn't assisting but preforming does a good job.

moving forward - surgery

A week past what could have been another treatment therefore I’ve had the extra week to heal.
I have been feeling better. My sense of taste has improved but my muscles feel like I haven’t used them in years. Which I have. I didn’t make myself bedridden. But that is the nature of the beast. Affecting muscles among other things. My insides still feel… swollen & burning.

I’ll be meeting w/ radiation oncologist August 26th to find out when that will begin.

Surgery is on August 27th . He’s going to try to go in laparoscopicly, but warned if he has trouble, like the parts coming out may be too large, or he is concerned he might accidentally sever a kidney exit tubie thing, or an intestine, he will then slice me open. I am praying he is precise and exceptionally skilled to be able to do it laparoscopicly and I can go home the same day. I just don’t want to spend 1-4 nights in the hospital with my daughter’s substantial separation anxiety. (Add that to her throwy uppy list.)

wrong cat

I did have a 4 phase ct scan. The doctor reported everything looked good. Which was great news until, I brought up the fact that, they reported on the WRONG THINGS! They talked about the jugular instead of the subclavical looking for clots, the oncologist concurred and went to check it out himself. They didn’t mention the node in the right lung, or pick up on the microcalcifications in the left lung which I’d think should actually still be there since it wasn’t removed & it’s a “waste” like product of rapidly growing & dying cells…. I did get a call that there doesn't appear to be a clot in the subclavical. Which is good. I have yet to ask the doctor to check on the lungs issue (again cos I didn't get an anwer). It just doesn’t seem they were as thorough as they should be. Perhaps it was because it was on a Friday and the tech just wanted to get the heck home for the weekend? But that sure as hell doesn't help me or my doctors now does it.

What Smells or things literally make you sick?

It is really odd how a smell, certain consistency or a thing can trigger strange reactions and often affect us without us realizing it right away.

When I was a young whipper snapper, there was a night I clearly remember when I was sick. Full blown throwy uppy –heaving every 20 minutes kinda sick. In between the horking, I would lay down on the couch. My mother had the, get up to turn the dial, before VCRs, only 7 choices of stations, tv on and it was tuned into the movie Hello Dolly, it may have been the first time it was on tv.

A couple years later, Hello Dolly was on again. And I’m sorry Barbara, but soon as I saw it, I instantly got up, ran down the hall with my hand covering my mouth in case I didn’t make it to the bathroom, and uncontrollably blew it all. I didn’t realize that movie was a trigger until it happened a 3^rd time. That sick feeling of viewing that movie stuck with me into my 20’s ever since that first memory of seeing it. I’m over it now. I think.
I guess I really can’t be sure. When I run across it now, I change channels with my remote control to any of the other now 200 channels.

I’ve always been a good hand washer. But going through chemo treatments I diligently and obsessively washed my hands my hands near raw for fear of slipping and making myself sick - er. Halfway through, I found a soap that just smelled divine. Lavender. Quite refreshing. This past week has found me feeling progressively better then I’ve felt in over 6 months. Yesterday, I washed my hands with the lavender scented soap. I began to have a recall moment and developed that tin-y chemical taste in my mouth. I notice a few minutes later, my stomach didn’t feel so hot either. A couple of hours goes by and Sarah washes her hands with the same soap….. I immediately had that taste and stomach thing start again. Then I realized, I now absolutely and passionately hate that smell. I had to ask her to instantly dump that crap out before I blow.

I had a problem with lima beans too.

My daughter’s downfall was hotdogs and “slimy” fat noodles with chicken a-la-king (she was good if it was rice). She’s over it now, but that took about 4
years. When we’d go shopping and she got mad at me she’d start repeating, “lima beans, lima beans, lima beans, lima beans”. I’d fire back “hotdogs, hotdogs” and “slimy fat noodles with chicken a-la-king”. We’d both start
getting queasy then silently finish our shopping and get the heck out of the
store. .

I would love it if you’d share any stories you have where a thing or smell affects you in a strange way. (IceAngel, I’ll be willing to bet you have a couple!)

What I’m learning---- From so many people….

So many family & friends praying & have my back ….

and So many strangers out there praying for me….

I carry a tremendous amount of guilt. Guilt of all the people that have sent me well wishes, prayers, cards, gift cards, food… Where the hell was I when YOU were going through a real rough time?

I always prayed for you. Always. But I never told you I was. And I SHOULD HAVE TOLD YOU. I know now the difference it could have made. You knowing I cared about you. I have learned a great lesson from you. I am thankful for that.

I still get cards & prayer cards, and I still cry each and every time I read them. Part from reality hitting again, but mostly knowing that 8 months later, you have not forgotten me, still care, and still pray. When I feel low or alone, I turn to those cards, re-read them and remember you are there for me. And yes, I cry all over again.

To the people that don’t know me, but are praying for me…

You have humbled me further.

(I’m still scared, so please don’t stop.)

Some want to talk but some just clam up

I hope this doesn’t come off as a harsh rant. These are merely the thoughts that run through the heads of some of… “us”. The people that belong to a “club” that no one ever wants to join.

To those calling, leaving messages, I appreciate you so very much! And again, I apologize for not returning your calls.

Some of my own family members are on edge wanting to know what the heck is going on with me that don’t own a computer or have Internet access. Whether you do or do not, please know I’m not avoiding you. Please don’t take it personally, or feel singled out or excluded. You need to understand, I have felt like shit beyond shit for 6 months now, holding my head up for 5 minutes could tire me. At times I didn’t even know what I was saying. I was just not able to communicate successfully. (Think back to a time when you were violently ill.... while you were throwing up, or resting shortly afterward, did you want to talk to anyone in those moments? How about pneumonia? You just wanted to sleep. You didn't have energy to chat.)

And let’s be realistic, there are people out there that ask how you are doing that don’t really want any details at all. Some want you to know they genuinely care. Some are afraid of what they will hear, don’t know how to respond but want to be polite by at least asking. Most legitimately DO want to know. It’s hard for someone on my end sometimes to know just how much information to spew. Essentially, I try to shut it off. However in turn I feel, I have nothing to offer to the conversation when asked “what’s going on?” or “how are things going?”. I feel there has been nothing for me to talk about except what’s going on in my house that I’ve been confined to, only nothing IS going on because I’ve felt like shit and haven’t done anything with anyone. Then there is the, you forget who you’ve told what to. After saying it a couple times, you just don’t feel like repeating it again. The story teller looses the oomph and the story becomes lacking and dreary. So, I have to say, blogging has been a great relief from that.

I’ll try to work on attitude adjustments and better time management now that I’m expecting to start feeling better.

Thanks for listening and being patient with me!

((Now that I'm thinking about it, I am realizing, instead of making excuses from my point of view, there is actually something for me to learn here! Damn))

Alternate Reality hits a Milestone.....

I’ve never been one to get wound up about finding a tumor. (I’ve had plenty removed in my time.) I went with the flow, had it removed; always assumed it would be nothing to worry about. Others around me would get excited and up in arms about it, but I was always the cucumber. Why worry until you have to? When I first found out I had cancer, I actually remained quite cool about it. I wasn’t surprised. Until I learned more detail. The
aggressiveness & severity. The dreaded outcome and odds of something this aggressive. THAT surprised me. I really despise that word. Cancer. There are days when I realize I have it and I really really can’t believe it’s happening to me. It’s much like an alternate reality. I think that word should not be associated with me one bit! Not me or anyone around me. Family or friends. It just doesn’t happen to me. Each time I type “that word” I get queasy. I honestly feel like I might blow chunks.

So, in this alternate reality I’m living, that can’t really be my life, a milestone has been achieved. I made it through 6 rounds of TAC chemotherapy and so far I’m still here. I’m not feeling the greatest, but I can honestly say now, I’ve felt worse. With more shots, my CBC came up to a pretty good level, therefore I ventured out to store (with less fear of catching something) with Sarah for school supplies. I was completely wiped out by the time we got home. I had a CT scan yesterday, 4 testes in all, 2
bottles of berry smoothie barium (yum? Not really, but I’ve tasted worse), 3 shots of dye, which I could hear the squirting sounds as it was being injected, then the hot feeling rushed in. Not unbearable, but it wiped me out. I got home, changed clothes and flopped on the bed. I could have slept through the night even though it was only 4:00 when I let my eyes close.

Of course, I’m nervous what the scan may or may not find. It’s a
vicious circle. If they find something, I’ll be totally crushed. If they don’t, I’ll sit and wonder if there really was something there, but it was missed or too small for them to catch, and then by the time another test is done it will
be too late, it will have grown, and I’ll be crushed. If I had a less severe form of canc…((( choke )))… this disease, maybe I’d be thinking a little differently. Maybe I wouldn’t.

Getting close to the 3 week mark of what would normally be another treatment on tap, but being done with them, I’m looking forward to feeling better with each passing day. I may get knocked down a few pegs near the
end of this month when I get the ovary surgery and start radiation. But we’ll cross that bridge when we get to it. My brain is thirsting to go back to
work. Yet, it gets tired and peters out rapidly still. If I were to try to go back today, someone would probably find me staring blankly into space with in 30 minutes and later my face planted in the keyboard inside and hour. I’m not sure what affect radiation is going to have on energy, concentration, and scheduling of my time. That’s the same bridge that is currently under construction.

Can’t cross it till it’s built.

Last one on tap

It is safe to assume, if I don’t post, I’m not feeling well.
The posts get farther between, because it is taking longer to recoup.

The last treatment on July 2nd not only put a big damper on 4th of July celebration, (mom took Sarah to see fireworks which she truly enjoyed – THANKS MOM!) but left me weaker then I’d ever been. My blood counts dropped like they have been only much faster, sooner & farther down. Pretty much as far as you can go, white blood down to Zero. My blood pressure dropped drastically. The doctor apparently didn’t want to worry me at the time, but when it came back up after a regimen of daily shots he expressed his relief and said how dangerously low it was getting. I could tell it wasn’t right. I couldn’t sit upright for 60 seconds with out the black outs starting with a fish bowl feel then a tunnel vision. Standing was a joke. I’d have to get up, get to the stairs and stop at the top & lay down. Go down the stairs & lay down on the couch at the bottom.

Heading into the next, the 6th, the (hopefully) last chemo treatment this Wednesday, not only is my stomach churning, and I’m having “total recall, memory tastes” (one can actually taste the injections. They are not pleasant and pretty much stick with me for the 3 weeks) I’m scared as well. Pains started coming back. Not pains from treatment side effects, but the same old pains in chest & in the arm where the lymph nodes were removed. I can’t help but wonder if this is all even working… I do try to remember to tell myself it is, but you just can’t help but wonder and be scared. I’m not scared for me. I’m scared for my family.

I’ve not gone to church for weeks (which doesn’t help me feel any better) either being way too tired which hits any moment and fast, or my counts are too low and I fear of catching something from the child that usually is behind us coughing. I defiantly get the guilts from not being there.

I’m feeling very anxious to get the show on the road for the other steps I need to take. I need to get “tumor markers”, I need to get radiation started quickly… I need to get ovaries out, but before I do that, I need to find a new doctor. I just don’t have the faith in my long time ob/gyn. There isn’t much time. Generally, by the time you s tart feeling a little better is when you have to get these other things rolling…

THANK YOU EVERYBODY that's hanging in there with me!!!

Sarah's summer sucks a little less

Thanks again to mom,

Sarah’s summer had a little boost from the normal sitting around in the house doing nothing…. She had horse lessons. Not only did she get to ride, but learned everything you need to do before you get on. Getting them out of the stall, cleaning brushing before and after, how to put on the saddle… way cool. And I think she really enjoyed it. What little girl doesn’t like horses?

Sammy update

After a few trips to the vet (thanks for taking him mom), blood tests, x-rays, and a special diet with a feeding schedule, Sammy is better. We got him through some kind of pancreatitis shock thing, now we have to keep him on a special diet. Sarah and I brought a mattress down to camped out in the front room with him. He was so weak, he could barely walk. Getting upstairs was completely out of the question. We had to bring him his food & water & help him get up to get him outside to pee. He had lots of pills. So did I! I was having one hell of a time trying to keep them straight! I had pills 8 times a day, he had 5 times a day… I was worried I’d take one of his by accident or give him one of mine! Poor guy, one night he just laid there and moaned all night in pain. Finally after near a week, he pooped & we were all hootin’ and hollerin’ & clapping for him. He had a look in his eyes like he thought we were complete idiots, but waged his tail in recognition anyway.

Fear of the Unknown...

Heading into my 5th chemotherapy (tomorrow morning) and my feelings are racing in all different directions. I’m not sure why. Maybe it’s because I have to get that mid picc line again and I know it’s going to hurt, or because just when you start feeling a little better, here comes more poison treatments.

Maybe it’s because of the dream I had 3 months ago that still haunts me. Where I walk into the house as if I just got home from work, but I notice the house is quiet and empty. Sammy (our dog) doesn’t rush to me to greet me like he usually does tail wagging furiously with smiles waiting for a doggie treat… Sarah doesn't come running saying "HI MOM! Guess what happened today?!". Bobby doesn't come down the stairs saying "hey, ma, what's for dinner?"... I’m defiantly alone in the house. I look around and notice all that is in the house is a couple pieces of large furniture. The kitchen table, one couch, the TV upstairs… the tv in the bedroom… everything else is gone. No paperwork, no books, games or videos on the shelves… I think at first, Oh my gosh! We were robbed! But wait. They really cleaned out the place, pile of bills and all, and left the big tv?…. Then it hit me. I was dead. I was a ghost. I didn’t know for how long. And apparently my husband and daughter had to move for what ever reason. Where are they? Did I tell them I loved them? Can I still? What do I do now? And I woke up in a pile of sweat and tears.

Or maybe it was what happened a couple nights ago. I got up, one of the many times I do, in the middle of the night (as I have been for weeks) and went to the bathroom. I passed the mirror, as I always do when I make my way to the toilet, but something caught my eye and I backed up back to the mirror to do a double take. I HAD MY OWN HAIR! It was long as it has always been! I just stood there in shock and disbelief thinking, THANK GOD! Thank you God! It really WAS all just a horrible horrific nightmare! I just sat and stared at myself a while. Tthen I woke up again. I reached for my head. I felt skin instead of hair. I was confused for a moment as to which reality was really real. I was hoping I’d ‘wake up again’, but when I didn’t, I realized, the nightmare is what is actually real reality. Disappointment doesn’t describe it.

Maybe it’s because after this I head into a different world of reality which is unknown to me, of surgery and radiation every day. Maybe it’s because I happened to catch an episode of Desperate Housewives which I haven’t seen in a really long time, and one character is battling cancer. She only gets a few days where she feels ok before all her chemo starts again. (will I have to go through chemo again? Probably.) Her wig slips off, and totally turns her husband off…. I haven’t seen the show for a really long time and don’t know what kind of cancer she has or what her treatments actually are, but it sounded to me like it was a life long chemo treatments. Hmmmmm. Life long. Just HOW long is “life long”?

Maybe it’s because, this is a beautiful summer and so far, I’ve missed it all. My daughter is missing most of it because I usually did something with her every week and now I can’t. I’ve missed outdoor birthday parties and important graduation parties because I can’t be in the sun, I can’t get “warm” because I could start bleeding somewhere from even thinner blood. I can’t be around anyone that just might get sick in the next couple days, because catching anything right now, would be deadly for me. Glad I didn’t have tomatoes for those couple weeks! It was a God send that I didn’t have any on hand, because I usually do! I don’t think I’m supposed to use mosquito spray, because that’s more chemicals, yet, I can’t let my affected lymph node arm get a mosquito bite…

Maybe it’s because I read the blog of a young woman’s battle with cancer. So so young, just married and hopes of children. Her entire marriage she battled cancer. But at the end of her blog are her husband’s words. She passed. He still writes of her and her accomplishments and how much he loves her. Months later it’s hard for him to write because it still stings so. I should be thankful I have a great husband of 15 years (which I was totally down for our anniversary) and we have the most beautiful, compassionate loving child…. But instead I pitty myself because I don’t want to lose what I have. And I spend so much time worrying & feeling sick, that I’m allowing myself to miss the now.

Then I have thoughts of, was there cancer they saw on the scans but didn’t want to tell me about? Hoping that “positive attitude” & chemo might take care of them like their placebo studies? Was there some they missed? Every day I have strange physical feelings & pains and wonder, is it normal? Is the chemo killing me? Is the cancer growing? Going away? Staying the same? Will those odd pains go away? Will they always be there? When I have my ovaries out, will the hot flashes, night sweats, fatigue, insomnia, go away? Or are those things here to stay? Will the radiation cause an entire host of other problems I’m unaware of? Will we be able to afford treatments in a couple months? In a couple years? If we can't....

Throughout this entire experience with chemotherapy, no two treatments went the same. Each time, something different went wrong, or my body reacted different. 3rd chemo, I actually got near a whole week where I had some energy. Not a lot, but more then I’ve had. This last time I was really looking forward to having at least a week where I felt better and hoped to spend time with Sarah. But it didn’t work that way. I had absolutely no energy. I could force myself to sit up and watch a movie one day, or sit outside (in the shade) for an hour, or start to do dishes (couldn’t finish them) but that would tire me out for the rest of the day.

As I move toward more unknowns, which kind of doctors do I need next? Where do I find them? What will my test results & new scans show? When can I go back to work? I’m becoming more and more frightened. I’m a control freak. And a control freak needs those answers ahead of time. I have no answers. Therefore, I’m totally out of control.

I hope I’m not getting bitter. These are just things that float through my head, and sometimes they come in and out so fast, I really feel like I’m going insane

Yes, yes, I know. Sit, relax. Meditate or do yoga…. It’s really really hard to do that with a daughter & husband home all day and feeling crappy. Although, they just went out now…. And look what I’m sitting here doing.
Perhaps I should put the rest of this time to better use.
Thanks for listening.

Oh hell... (( 8:00 pm ))

Now our faithful, sweet, handsome fella, Sammy is sick. Pretty dang sick. He wouldn’t eat even hamburger, or play with a rock.

He’s become somewhat lethargic, tail way way down, moving super slow when I can get him up, throwing up all over… some runs… drooling like no tomorrow, like shoe strings hanging from his mouth. And he’s not a drooler.

Mom was great, she acted fast & came to take him to the vet right away. Sarah went with so she could comfort hem. They came back with 2 bottles of pills. 2 pills twice a day of one, and the other 3 time a day. Plus pepto bismal 4 times a day. Vet gave him a shot for his fever & antibiotic, said water in small doses but more often. He was drooling, I gave him 5 laps of water. Was about to try to get the first pill down 15 minutes later and Sam barfed more then he drank.
Vet said too early to tell, (he is bloated) could be anything from kidney stone to.... cancer.

Sarah asked me…. “mommy? Is HE gonna die?”

Vet wants to see him back tomorrow. Not Thursday. Tomorrow (when I get my "gone all day" treatment.)

Poor guy can’t tell us what’s wrong. But you can tell, what ever this is, it is hitting him really hard.

This little angel could use some prayers too.

today's thought

I'm thankful for: My mom. Everything she's done for me & everything she continues to do for me and my family.

What I hate today: I don't know how I could ever repay her. (I know she'd say I don't need to because I'm her daughter.)

today's thought

What I hate today: Cancer.

What I’m thankful for today: Even if my husband doesn’t find me attractive, he at least acts like he does.

I’m not as strong as you may think

But I really do appreciate the encouragement!

We’ve all seen the silly old 70's or 80's chick flick movie where the woman breaks down and sobs uncontrollably in the shower. I used to think that chick blubbering in the shower was a bit over the edge and overreacting, but now, I can identify with that woman. You want to be strong for people around you and your family. And damn it all if the only place you can be alone for 5 minutes and break down is the bathroom. And not always that long. There are days, I have a break down and sob uncontrollably. Snot running and all. In the shower (which is a good place because it actually hides the fact that you've got snot running) Or even sitting on the toilet (without the benefit of snot hiding, so a tissue is required).

I try to stay away from the doom & gloom on the blog. Which in all reality may tick off other cancer patients. And I’m sorry for that. But I’m just like the rest of you “survivors”. The reality of it is, I have days when all I think of is, I’m not going to make it. What happens to my family if I don’t? The odds aren’t that high that I’ll make it. My cancer is a serious, aggressive, fast spreading mutating cancer. Then I try to talk myself into, Yes, I CAN be one of those 23% or 40% or 8%. What ever percentage a research shows. Then I think, well, those percentages were the ones with stage I or II or low grade, while I have Invasive carcinoma, cribriform type, metastatic High Grade Stage III with extranodal extension (-30 nodes). And it’s really hard to feel otherwise when you feel so horrible. With odd pains you can’t even describe… to anyone. Regular daily or even sharp pain is non existent and replaced by, I don’t know what the hell this is. It’s almost a burn or a sting, but not quite. It just FEELS like a dead chunk of something. Dead cells, dead muscles or innards TRYING to function, but not quite up to the challenge. You don’t understand them and it scares you even more. You almost give up. I almost give up.

Then, a day comes when I feel a little better. And I try to pull myself up by my bootstraps and tell myself… ok enough. I CAN fight this. I’m not ready to go yet (though I know it’s a great place I’ll go to & I will come back and haunt (or talk to) you!) I’m not ready yet. I’m not done here.

I have some more learning to do.

I have some more teaching to do.
I have some more bitching to do.

And damn it. I want to do it. I want to do it right. Do it right & at a slow pace. I need more time for that. Damn it. I will claim that time I need. Or WANT.

The days when I shake my head at the research data and say to them "your research is screwed up or off" or "I’m different" may be farther between then they should be; But I do have those days when I’m SURE I’ll be one of the lucky ones to change those statistic percentages for the better.

Not sure if that makes me a “positive attitude” person or a person “in complete denial”.

yesterday's minor surgery

I didn’t have to spend the night in the hospital. It seems the vein had collapsed & clotted, but they were able to do Angioplasty and remove the clot. Though I have to say, fear creeps in when I feel the same old feeling of pain in that same area. I’m trying to stay positive.

And no, I didn’t have a gusher & spurt all over (not while I was coherent anyway) but I did ooze quite a bit afterward out of the dressing…. Ick.

○ Anyone else have angioplasty?
○ Did it go well with no further surgeries needed?
○ or did you have to go back for a stint?
○ or anything else?
○ Redi Whip?

Speaking or Redi Whip....
the male nurse was telling me how different people act differently on the injection he gave me... some fight it & stay awake, some fall asleep, some jibber jabber & while he may repeat parts of what he hears, he NEVER reveils the source. He did tell me one funny story. (which I'd love to repeat, but it isn't mine to tell) But it didn't occur to me till I was on my way home, holy crap, was he trying to tell me I felt care free and maybe said something I shouldn't have?!?!
((maybe that story IS MINE to tell?!?!))

Hell No, It Won't Go

Clot does not seem to have improved. It is blocking totally. Located in the right sub clavicle artery. Tomorrow (Tuesday) I go in and they will try to remove at least some of the blockage so there is some kind of flow. Currently there is “no flow” at all. I imagine having a flow would be better for my treatments……

I swear. I do way too much research.
Upon searching for a picture of the sub clavicle (so we can have a better understanding of why my whole arm is swollen) I found some very interesting information pertaining directly to me. Finding this information makes certain symptoms I had a few weeks ago VERY clear to me. And pretty much ticks me off. Why didn't the doctor pick up on it? I know they can’t know everything all the time. But if you only deal with chemo through ports etc, in this particular artery, which is quite normal, then the symptom of marbles under the arm pit and growing larger causing discomfort and pain, should be a clear sign something is wrong. At least one would think so. I had and reported that symptom before my arm swelled & they found the clot…..
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
(( the following is from www.biosbcc.net/doohan/sample/htm/COandMAPhtm.htm))


"Lymphatic capillaries converge to form lymph vessels that ultimately return lymph fluid back to the circulatory system via the subclavian vein. The presence of one-way valves in the lymph vessels ensures unidirectional flow of lymph fluid toward the subclavian vein.
If excess fluid cannot be returned to the blood stream then interstitial fluid builds up, leading to swelling of the tissues with fluid, this is called edema."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So… I imagine my lymph nodes were backing up before the arm swelling began. And this could mean I now have lymph-edema in BOTH arms now?

I’m thinking I’m glad I switched doctors last week. This one is taking more aggressive action.

With this picture, you can see the sub clav artery (#11) supplies quite a bit to the arm & it makes sense why it is so swollen.....

http://www.shambles.net/schoolnet/countryreports/myanmar/ict_lessons/science/G-6%20Body%20System/web/cir-e5_files/Cardio.htm

In any event, I go in Tuesday morning. See how much they can get hopefully without my now thined out blood spirting around too much.

Pulled the line

They didn't bother with a scan. They could tell I'm all clotted up. It would seem there are more then we'd like to see. Some in legs too. They pulled the picc line. We are now working on a last resort for the remaining 3 treatments. Insert a short picc line at hospital, get treatment, pull line right away. Now, they just have to figure out WHERE they can get one in. I don't want to even say where the suggestions are and jinx it going in those areas.
I'm just gonna pray they can still use the arm without any further complications.
Going back again today....

Damn it more problems

PICC line problem.....
Swelling began again Saturday & getting progressively worse. I'm going in now to be assessed & they will be doing a scan to check for more clots. Apparently, the clots are occurring because of chemo, and the cumadin (warfarin) doesn't seem to be working for me. ProTime & INR Numbers (blood thinning) haven't stayed stable. The line may have to be pulled out. Last resort will be to have a short line installed day of treatment at a hospital, have treatment & line get pulled out right away. For each remaining treatment (3 more). Possibly, daily stomach shots till God only knows when.
More prayers.
Please.

Nitrous oxide anyone?

You ever been in a house where you touch the refrigerator and either the kitchen sink or stove at the same time - and you get an amazing jolt of electrical energy? Well, that’s what it felt like when I had the PICC Line installed. They hit nerves along the way sending what feels like large zings of electrical shocks down the arm into the hand…. only you can’t stop it by letting go, you just lay there, inform them, to which you get an oh well “hang in there” response. I was calling it a Pick Line instead of PICC, which I think would be a better term for it when you feel like you’re getting “picked on”.

I used to have the kind of veins that anyone inserting a needle would just drool over. They were picture perfect great. And now they’ve have become hidden by swelling & weak making them apparently hard to work with. I was originally told they’d probably give me some type of sedation, especially since every thing that has any nerves in it seems to have become so over sensitive from treatments even skin.
But they opted only for a “Novocain” type shot. Geez even shots hurt now so much so that my palms begin to produce their own un-zen-ish waterfalls. I never had sweaty palms in my life.
I swear to god I’ve never been a big baby about this kind of thing. I’ve had more surgeries in the past 15 years then I can could on my fingers. I think my toes are about used up by now too.
BUT….
DOESN’T ANYONE REMEMBER LAUGHING GAS FOR CRYING OUT LOUD?!?!
Feeling of euphoria – that’s a welcome feeling
Hallucinations? I’ll work through that for the euphoria trade.
No veins, just breathe. Why can’t they use that?
Geez, give me an upright can of Redi Wip for me to suck on at least.
Why do humans have to "just hang in there"?

Anyone else have a story of a time they wish they had some kind of sedation?
dealing with children? boss? surgerical procedures?

Um.. yeah... no...
I want THIS 66666

Clots & Herpies

(if you only want the funny, skip down to the last paragraph)

One day I noticed my hands seemed red. Like someone who has bad circulation or high blood pressure. I didn’t make a stink about it, because I figured everyone would think I was being a big baby or making something out of nothing…. A couple days latter… well, long story short, something was really wrong (along with numbness on one quarter of my face, down my neck, swollen arm)…. A trip to the hospital revealed my blood clotting. There was at least one at the site of the medi port. (interestingly, I realized later what my platelet count being quite high meant. First time it was 155, the last time it was 499, which means blood thickening. Apparently the person, who drew my blood that last time, didn’t pay attention to that & just tucked it away in my chart. If only we had a jump on the blood thinners & daily shots in my stomach, perhaps I wouldn’t have had to have surgery to remove the port, with still 4 treatments left.) After a week & a half of bringing me up to thinning blood at 2.2 with shots in the stomach (including Saturdays & Sundays at the hospital) and coumadin it dropped down to 0.9 in just 2 days (because I had to stop taking the meds & let it thicken again for surgery). The needle sticking before surgery was nothing to be desired. How many failed pokes in my swollen clot side arm, along with failed attempts to get a line in my foot & ankle (they kept poking THROUGH the vein) I had to let them go in my left arm, which is a huge no no when you’ve had any lymph nodes removed (again, I had 30 taken). WHY? Because then you risk developing swelling in the arm, hands, fingers, that will never go away once it’s there. One nurse almost said elephantitus then changed it to a more technical term. I had to start the shots & orals back up. Now after a week it’s back up to 2.5 (they need it to be between 2-3 so that it’t thin enough & the body can try to dissolve the clot on it’s own.) Now, my left arm is beginning to swell, but I don’t have a good arm to compare to show anyone how much.

So, now the port is gone. They say they will try to get into a vein for the next treatment and after that I need to get a pick-line. HA HA Ha, they really thought (with what little experience they told me in the beginning they have with getting a vein, which is why they prefer ports) they actually thought they’d be better at getting a vein & not collapsing it with pushing treatment when an anesthesiologist couldn’t? Yeah. Ok. Sure. They broke through the same vein a couple times & gave up. I missed my scheduled treatment. Which has repercussions of its own.
But, I’m scheduled for the pick line Tuesday (5/20) and chemo on Wednesday near a week late. I’m guessing this throws of the entire schedule…. Scared again. I know this has great potential to be painful.

In the middle of all of that…..
2nd Chemo, we decide I won’t take Neulasta because of the harsh reaction I had. Right?
So… just when I feel like I can actually get up myself & I gain a little strength, along comes a cold sore, and the red spots on my head start to turn to itchy bumps. White blood cells are declining leaving me with nothing to fight the cold sore with, and they think the bumps on my head are shingles, which could be pretty damn serious without immune systems working. More meds are assigned…. I go pick them up. Now, I know cold sores are one form of Herpies but I didn’t know that about Shingles as well.. so, the new young woman at the pharmacy passing over my medicines in the drive up window is looking at me pretty funny.
Odd looks & sideways too…. I really didn’t understand why she’d be looking at me that way. Until I got home and opened the instruction sheet she folded up. In big huge bold letters it says “this medicine is used for GENITAL HERPIES”…..

funny how that phrase “genital herpies” was in BIG BOLD and CAPITAL LETTERS on that sheet. TWICE! But “shingles” was in regular print. I felt like running back there and telling her "NO! I DON’T HAVE GENITAL HERPIES! JUST a COLD SORE & MAYBE SHINGLES! NO, REALLY!"

Instead, I just had a laugh about it.

so sorry

I’m sorry to everyone I have not called.
I’m sorry to everyone I have not called or e-mailed back.
I’m sorry to everyone I have not personally thanked for the kind
things you’ve done or sent or the prayers.

(I immensely appreciate every card & well wishes, prayers & cookies…. Everything I receive I am truly thankful for deep in my heart.)
THANK YOU!


Just when I feel I’m gaining some bearings and maybe can begin to concentrate on those things, the rug gets pulled out from under me and I lose my ground.

It is really hard to “stay positive” when you get beaten back down. There are days when I really want to smack someone that says “keep positive”. But there are days when I REALLY need to hear it.
((I’ve had some setbacks.))

Night Shift

Bobby’s job was prolonged, which is a great thing! Unfortunately, he had to go to night shift to do it. While everyone else received their official & final kiss-off notes, we will be wondering when he will get his & if he will have as much notification time as the others. But for now, we are happy he was offered this “extension” which helps my situation. Sarah misses her Daddy though. She misses watching Funny Home Videos with him & trips to the cottage. I think she even misses him picking on her like a big brother would. She is also worried he'll get into a car accident and she won't know because she'll be sleeping. I don’t have the energy to do things with her I’d normally do, which makes Dad’s screwed up schedule (and working Saturday & Sundays) feel like a double whammy for her.

For better or for worse

When you make the holy sacrament of marriage, the priest says “For better or for worse”, yet no one ever expects something life changing to happen to themselves or anyone in their household. I’d have expected it to be me taking care of Bobby with his back problems along all the abuse he puts his body through working so hard at work and at home…. But it isn’t working out that way right now. I’ve gotta say, he has really stepped up to the plate – accepted the figurative reigns & run with them – He is, without question, really shining. He has picked up slack at home, showered me when I couldn't do it myself, without making any sex jokes or "hey baby" moves! He hasn’t bitched once about stopping at store, or picking up medications, been incredibly supportive, positive and loving. He hasn’t faltered. Even though he had added stress of his father having a stroke (he found that out the same day I was having surgery for the medi-port installation), more car problems with both vehicles… I just can’t believe he hasn’t cracked yet.

I couldn’t be more pleased watching him become even more involved and growing closer to our daughter. Not that he didn’t do things with her before. He’s done many things with her. Boating, Jet skiing, snowmobiling, bicycle riding, roller-skating, playing polly-pockets (even though he made the boy rob the girl behind the cash register, he made it more interesting), planting gardens, playing video games, take her fishing, watching shows she wants to watch (Sarah & I both strongly agree his laugh is totally infectious), trying to help with homework (but could never do it quit the way mom could and he felt like a shut out minority living among 2 girls). He is putting forth more effort (and I’m stepping back to allow his efforts reach her, which was probably the biggest obstacle). I truly enjoy watching the interaction and am delighted their bond is getting stronger.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Bobby-
When we got married, I knew we would “share our lives”. But beyond living in the same house, sharing the bills, being friends (w/benefits), spending time together… On our wedding day, 15 years ago, it never crossed my mind something like this would happen and you would be there for me so much more then I could have ever thought. So often things we’ve been through, from our house fire, supporting all of us, to this, tear other families apart, but here you are, pulling us all closer together. You are struggling with this as much (or more) then I or Sarah. You have not once lost it, gotten upset or aggravated with me. You’ve kept your cool with our hormonal “t’ween” daughter. You are right there to say what I need to hear while trying to maintain some normalcy in our home for all of us.

They say a girl often marries someone like her father.
I would be proud if she finds someone, just like you.

I love you, “this much more then 10 minutes ago”.
~C~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~