A grenade like Hazel Grace?

In the book The Fault in Our Stars the main character, Hazel Grace, compares herself to a grenade. She doesn't want people to get hurt when she dies. She doesn't want people scarred by the shrapnel.

I am a grenade. I'm doing fine now but there's always that chance that things can change quickly. After all, my oncologist said it's not "if" but "when". It makes more sense to me by thinking this way. It helps me to understand the people who want to stay away. Maybe they just don't want to get burned.

I see the PS tomorrow morning to figure out a new plan. I hope I won't have to wait 6 more months. 

Last year on April 30 I was in my Wilderness first responder class. I'm still thinking about taking the WFR to EMT bridge class.

Mother of all headaches or a migraine?

My head is pounding today. It started in the night and it's making me feel nauseous. I was reading last night when the "nurse" puked up on my comforter. I ran to grab paper towels to clean it up. Finally settled back in with my book and something was wrong with my eyes. Zigzagging lines, blind spots. I have had that before & last year learned that it's some sort of ocular migraine. I read up on it again last night and I can be caused by bright light (like when I went to find paper towel and turned on the lamp). The article also said that it may also be followed by a headache.  

I drank ginger tea then had some soup. Then I popped a zofran and benedryl. 

Otherwise, I feel ok. Nothing hurts at the moment except my head. 

Frustrated & disappointed

Well, the expander had to be removed. I went for my morning appointment and PS said the purple areas were thin skin. She shined a flashlight over the area and it was easy to see the thin areas. 

I went back at noon and she performed the procedure in the office. Numbed the area, cut along original incision. Lots of fluid drained out but no sign of infection. It was weird to feel the expander being pulled out. Since I was watching and not grossed out she showed me just how thin the skin was...we could see her gloved finger through the thin areas. Oh wow! She collected some tissue to send for a culture. That was kinda crazy to see! She irrigated with saline and then wiped the inside of the "pocket" with gauze (that felt odd, unpleasant). Poked a hole for the drain tube with a huge trochar that she called a "harpoon". She used my radiation tattoo on my side as a guide to make sure she poked in a numbed area. Sutured me up with absorbent sutures and steri-strips. Done. The worst part was the lidocaine she used to numb the area. That stuff STINGS! We listened to music and chatted the entire time. They were rather amused that I wanted to watch.

If/when we try again it will have to be with a lat flap for the extra skin coverage. I haven't had a problem with the left side so I think that will be fine.

I hate the Internet!

All I want are photos of skin bruising vs necrosis. I know what black skin would be and I know what a regular bruise looks like. I have purple areas and CRT (capillary refill time) seems good.

I felt better yesterday. Tomorrow I have an appointment with PS at 9:30.

Plans

Lately I have been daring to imagine my life after the recon is over. I have my survivorship appointment on the 29th. My oncology appointments will get farther apart. I'm anxious to plan for the future. Sometimes I want to stay in Michigan. Sometimes I want to move west. Salida, maybe. I have lost the input of two people who always helped me make decisions. It's not good to push people away but it's easy for them to go if they don't care and probably a relief.

"So what I'm trying to say is that you should text me back.

Because there's a precedent. Because there's an urgency.

Because there's a bedtime.

Because when the world ends I might not have my phone charged and if you don't respond soon, I won't know if you'd wanna leave your shadow next to mine."

-Marina Keegan, Nuclear Spring

Pectoralis Pain

So, my side up near my armpit still hurts. I'm assuming it's a muscle since the expander is cover by muscle (at the top). Here is a diagram:

A Tissue expander -- unfilled
B Port
C Catheter
D Syringe
E Ribs
F Pectoralis major muscle
G Other muscles of the chest wall

Not in hospital...yet😊

I packed my toothbrush and a few other things before I went to my doctor appointment. She said she's not sure what's going on since it now has gone from red to purple. She's not ready to give up on it yet. Removed 100mls or 160mls (can't remember) and put me in antibiotics for another week. Felt better having some of the saline removed from the expander. The nurse also taped it up to act as a compression "bra". It aches tonight along with my right shoulder/armpit area. That's ok, just as long as there's no infection. I'm happy to be sleeping at home tonight instead of in a bed that constantly readjusts with people popping in and out of the room all night.😄

Worried

Ok, I am now officially worried about my expander and this infection/not infection. It's swollen and feels hot but it looks bruised more rather than red. It swollen almost up into my armpit. I don't see PS until 1pm tomorrow. No fever.

I've mentally started packing for a trip to the hospital. 

Last PT appointment

Saw my physical therapist today. Last time for this year because of insurance. It's too bad that I had to have all my appointments within 90 days. It would have been better to space them out. I'll miss seeing her!

Drain is OUT!

Woohoo! No more drain! It was ready to leave me. I didn't feel anything when the nurse pulled it out. It was disturbing to feel warm liquid run down my side but the nurse didn't appear concerned so I assumed it wasn't blood.😀

Arm, drain, & witch doctors

My arm was huge this morning. It's been doing ok. I had a PT appointment so she spent extra time on my lymph drainage and put in an extra wrap. She told me to look online to find out if there's something topical I can put on my red, swollen area. We were discussing that maybe it's not an infection. I did have fills every week for 3 weeks. Maybe that was too fast. She joked that I need to find a witch doctor.😄

I'm trying benedryl to see if it has any effect on the redness. I also put iodine on it. I think it looks better but what do I know.

Also taking ibuprofen 800mg (from when I had my uterus biopsy) to see if that reduces inflammation. Forgot & took it without food this morning. Not good.

I got excited this morning that my drain output was less than 10mls. Got home from PT and saw that the gauze covering drain site was wet. I had to cut another 2 inches off the tubing due to another hole. It's getting shorter and shorter. Pretty soon I'll have to pin the thing to my bra strap.

Infection???

I thought my skin looked less red this morning. Looks red again tonight. Temp was 99.7 on Fri but lower since then. 

Still draining 50-60mls/24hrs. Waiting to see how it looks on Tues. PS has office hours Tues. & Fri.

It seems like an infection like this would have a high fever. I'm hoping the antibiotics are working.

Bummer!

Drain is still in and PS thinks it's looking red. I swear it looked fine yesterday. So I'm on Cipro & Doxy again. Geez, just set me up in my room at the hospital and infuse me! This is not going to happen again!

I have another appointment next Fri. Sooner if redness increases (she drew around the red areas with purple Sharpie) or drainage slows down to 25ml/24 hrs.

Wide Awake

I can't sleep. I haven't slept well all week. Soul-sucking week. I want this drain OUT! The tube came disconnected from bulb earlier. I finally noticed. I hope no wee beasties got inside the tube. I cannot deal with another infection!
Cried a bit a couple of minutes ago. Mini pity party.

Start

When I started this blog it was an easy way for me to explain my cancer and treatment to friends. I never wanted it to gain followers or be easily searched on the internet (still don't). Now it's a record for me. I started a written journal also and only made about 10 entries. I plan to put them on here as well. This blog is an account of my cancer experience and each entry is something I went through or felt at the time. Late at night, when there's no one to talk to I pick a topic and write. Grammar may suck, pictures and descriptions may be gross, but I don't care. Jade is a cat and McCaffrey is a dog.
As Alice says: "I can't go back to yesterday because I was a different person then."

Lymphedema

People with lymphedema are supposed to be super careful with the affected limb. In my case that would be my left arm and hand. 

The RULES😁

-no needles or blood pressure cuffs

-avoid cuts, scratches, insect bites

-don't pick cuticles (I do pick mine. Trying to stop...)

-no hot tubs

So knowing all of this I innocently asked my therapist what kind of sleeve I should wear when I'm out hiking in the woods. You know, with all the bugs and branches and thorns. I didn't want to ruin a $90 sleeve every time. She laughed and said "Well, you're not supposed to be out there getting scratched up!" Oh, right...She suggested wearing a long sleeved wicking shirt over my compression sleeve.

Mark is very inspiring

http://www.lymphnet.org/resources/mark-a-goldstein-from-survivor-to-conqueror-to-advocate

Feels good to cry too...

Goal

Someday I WILL do this:

(Kino MacGregor)

This happened...

I snaughled at Great Clips yesterday. 

All because of this comment:

"I'm sure if a cat sniffed out cocaine u would know when it went rippin away from the scene"

Posted about an April Fools story that the RCMP was launching a Police Cat Service Unit.

That comment is still cracking me up! Feels great to snaugh!

Awesome Quotes

Sucky drain

The worst part about having the drain is that I have to wear baggy tshirts to hide it. I have one nice shirt that hides it well enough for when I go out in public. 

The smaller diameter tube is much better. It's pretty short since I cut a few inches off the other night. That was a good thing because my lanyard broke while I was in the shower and the bulb didn't have far to fall.

Normally it gets extremely sore where the tube is stitched to the skin. It's about 2 inches below my armpit in my side. My skin gets so irritated from the tape so I rotate between bandaids, tegaderm, & gauze with paper tape.

Rude sales people

I went to a medical supply store the other day to find out about being fitted for a custom arm sleeve that my PT recommends. Normally I just by my stuff through an online store called Lymphedema Products. For the custom garment I need a prescription from a doctor before they will even measure my arm. At least my insurance should cover it but they won't cover night garments. So unbelievably stupid! Anyway, the guy at the store wanted me to make an appointment for a fitting. I wanted to wait until the end of April when I see my primary care doc again to get the prescription. He said ok, but he would no longer be the fitter and he introduced me to the girl slumped beside him. She was resting her chin in her hand looking totally uninterested. She didn't even acknowledge me. Uh, right, not gonna happen. I'll take The Arm elsewhere. 

I find I am so done with putting up with crap!

Love, Loss, And What I Wore.

Lately things made me think of that book written & illustrated by Ilene Beckerman. She describes how clothes are often tied to our memories, good or bad. I remember the shirt I wore to chemo. I remember the shirt I wore the first time I rode in a Porsche 914. And the daring clothes I wore to Cecilia's. I remember what my friend was wearing when the towers fell on 9/11. I remember the halter I was wearing on a visit to see a boy in Fort Collins. I remember what I was wearing one glorious day in the dunes at the beach when the wind blew sand in our ears and the Coast Guard kept flying over. I think of the skater's Ravers Suck shirt and his red racing suit.

Then I think of eyes and smiles and people I miss so much it hurts.

Last fill!

Still have my lovely grenade shaped passenger. Stupid drain! They will pull it next Friday ready or not.

So now I wait while I expand...

Oncologist appointment

I saw Dr. K on Wed. I asked about having my drain removed. He'd prefer to wait until after my next scans in June. He went on to say something about it could be a while before I'd need to have chemo thru the port. He said there are 3 hormonal options to try before we'd need to do chemo. He made it sound like a "when" rather than "if" situation. He's expecting metastasis.

Drain malfunction

Had a bit of a drain incident last night after I emptied it. The grenade (bulb) wouldn't stay flat. There was a leak. I found that there were holes in the tubing so I grabbed my handy duct tape. Then I thought about it and decided to very carefully clean everything and cut off the part of the tubing with the holes. Voila! 

Still draining and appointment tomorrow.