Treatment canceled

I met with my oncologist today. I had a full exam and we talked about the recent blood clots and cough I've been battling. My throat is pretty torn up and he determined I am not healthy enough to endure treatment tomorrow.

There is a possibility that the constant cough is a sign of lung damage. One of my chemo drugs is known to cause this. So, I will spend tomorrow having more scans done to check out my lungs and nodes. The purpose is to check for any lung damage but he's having the scans run wide enough to determine shrinkage in my lymph nodes. Keep in mind, I never had any tumors. Lymphoma just resides in your lymph nodes and causes them to expand or 'freak out' as one doctor told me. This will be the first time we'll get to see how treatment has been working.

With two chemo's left I'm ready to just get this done, but I understand his concern and the need to postpone. We'll hopefully have a game plan when he sees the results of the scans. The cough medicine he previously prescribed has done nothing- so now I'm on another one. I'm praying something works soon. I'm not quite sure what lung damage would entail...it's not like they can go in and put a bandaid on it. We don't really need another complication, but I'll be ready to handle whatever news I get.

I've decided I'm going to keep a cake in the fridge at all times. The fancy store bought kind. I'm going to have Shnucks decorate one with my name on it with some smiley faces or something. Or maybe....'Hey Cathy, have a good day.' The next one might say 'Eat me and feel great about it....or simply 'Screw Cancer.' I've decided I like cake and I deserve a constant supply for no real reason. I'll take pictures.

I will do my best to keep everyone updated. Thanks for the continued comments and prayers!

New week

Last week wasn't so great so I'm hoping for a better week. The shots weren't so bad after a while... I kind of got used to them. The burning sensation was the worst part. I go to the hospital daily (separate from my cancer center) ....yes daily...to have my blood levels checked. They're happy with my progress so far so I get to go off the injections for a bit. If my 'numbers' don't continue to climb they'll put me back on them later in the week.

Yucky shot I don't care to see anymore


I know it's necessary but I'm not thrilled with having thin blood. My dose of Coumadin keeps getting raised so at this point I'm afraid to cook or use a knife. They told me I better not get in a car accident because I'd likely bleed to death internally. Who says that?

I'm doing pretty well aside from a very annoying cough I acquired about 10 days ago. It just isn't going away and it keeps me up at night. I hate taking MORE medication but this weekend I was so desperate I tried cough syrup. When that didn't work I tried an allergy medication. No go. I called my doctor today and he prescribed some jelly bean looking clear pills but so far they haven't helped either. Every single time I've had pain or a weird symptom they've rushed me off for testing and it's ended up being pretty serious. So, I'm picturing my port being dislodged shoving air up my throat or something.

The cough has lasted long enough...it just seems weird it hasn't gone away. They don't seem to think it's related to my port so I'm hoping it's just some allergy that heads out soon!

Poor Daniel is so stressed he has a self induced case of trichotillomania. :) He's pulling his eyebrows out. The other day I noticed half his eyebrow was missing; from the middle to the end. I said "Where did your eyebrow go?" He's been fidgeting and yanking them out- poor thing! Mine are falling out on their own... I begged him to keep his if at all possible! We're quite the pair out in public.

I could not ask for a better husband to hold my hand through this. (Remind me of that on nights I get pissy about something stupid...when he hasn't taken out the trash or gets the carpet muddy.)

That's all for now. Thank you for all the prayers and support.

Couldn't do it

I couldn't give myself the shot. I tried for over an hour. I went to a comfy, private place..got all scrubbed up and opened the injection. I bunched up my stomach skin (plenty to work with) and all I had to do was stick it. I tried and tried...but no go. I had 1000 'what if's' in my head...about the needle breaking, an alien grabbing me from under the bed at the precise moment I injected, or my dog two floors down jumping on me to cuddle causing me to accidentally shoot my eye out.

So, I packaged everything up and went to the main level of the house. Daniel scrubbed up..it still took me half an hour but I was able to let him inject me. This needle is TINY compared to what I've encountered the last five months. There's just something about having to do it myself. Tonight- another injection after I make Daniel practice twelve times on an orange.

I'm on bed rest and I'm thankful my husband is here to help me. He's very stressed about all this but he's been so wonderful. I'm in a lot of pain and I hate taking the Vicodin but I need it for my entire left arm and neck. I'm not sure what oxygen supply or blood flow these clots cut off but it sure doesn't feel nice. The left side of my neck is horribly swollen and tender. Funny...it's the same spot my original cancer was detected. I was astounded when the nurse told me...I really thought my port was just causing some bruising under the skin somehow. Geez, I didn't notice the swelling... you would think I'd be better at checking for fatty neck tissue by now considering that's how I got into this mess! Blood clots hadn't crossed my mind, and I'm thankful I wasn't in stubborn mode and instead actually got checked out.

The medications will do their job and hopefully I'll be feeling better soon. Thank you for the comments and prayers.

Setback

I hate logging in to report bad news and for now I'll keep this brief. I've been experiencing a lot of pain since the last treatment and luckily I called first thing today. I got right up to the cancer center where they promptly had me rush to the hospital. After a day of testing they have found several blood clots up and down my jugular.

I'm still at home and for now will follow a regimen of daily self administered shots in my stomach, Coumadin and pain medication. Daniel is more freaked out that I am; I am just determined to take care of the problem. :)

More later and thank you for the prayers.

#6

Treatment could not have gone much worse. I'm sick during them and I'm sick after them. All night I was seeing triple and could barely stand. We seriously thought about calling the center and asking if a hallucinogen had been placed in my concoction.

I could not get warm and the shaking seemed more convulsion-like than chills! It just wasn't pretty. I tried a hot bath but it made me dizzier and sicker. I was in and out of alertness until I finally fell asleep about 8pm. Today the blurred vision is gone thankfully. I'm achy and tired as usual but it's much better than yesterday. Thanks to my sis in law for going to treatment with me. I'm not sure I could have driven home!

The medicines are just building in my system now and I may need to expect this for the duration.

More later when I feel better. Love to all.

Good friends!

It's taking me a little longer to recover from treatments now. Several of you have contacted me and I appreciate it! This Thursday will be #6. I'm feeling good today so here goes!

Our good friends Eric and Melanie offered us completely free passes to Six Flags so we completely took them up on it. It was a nice day away from everything and we had a great time.

All the kids


When we were sixteen I took an unexpected...sharp...corner too fast (by Wildwood for those of you in Steelville) in my parent's Explorer and thought the thing would flip. It must have rained that day because there were puddles everywhere...the tires hit it just right... and water came rushing into our open windows and drenched us. Eric laughed so hard that I can STILL see his face and hear that cackle. It was scary, but great. (Thank goodness my mom does not have internet access. Sorry mom. I was a safe driver the rest of the time I swear. )

Has anyone else thought "Thank goodness there was no facebook in my day?" I have. Shew....

Noah is a safe driver as well



Eric's girls were very proud that they were strong enough to pick Noah up and carry him small distances. Then it hit me, hey... our 9 and 12 year old still do that! They often mention how they can pick each other up... a friend up... anything... and carry that person around. What is it with kids and proving they can pick things up??



Catch that grin? Such a flirty boy



You don't have to say how much they look alike. I hear it daily from close friends and from complete strangers... I get it.



Eric has a house full of women; I think he enjoyed this. One of my faves...



Me telling Daniel I am thankful for good friends and days I have energy. I'm not looking so great these days. Give me a break. :)



Thankful for such a great family!

The second radiation consult

Thursday's session went ok. I was given a damp washcloth that I sprayed with lavender scent. I breathed into it throughout the entire session and it helped ease the nausea brought on by the smells of the room. Can you believe I've been in chemotherapy since February? On my end- it's gone very slow but I'm thankful it's May now. Three more. Three more. Three more.

Daniel attended this treatment and when the nurse was done with one of the injections Daniel (for whatever reason) reached over to touch the paperwork hanging off the bottle. The nurse about had a cow. Covered in gloves and a mask, she slapped him away and advised him if one drop of a medication got on his skin it would eat right through the tissue to the bone in seconds. Yep. This is the junk being pumped into me every other Thursday.

That's why a nurse sits right by me and pushes 3 of my 4 drugs through the tubes to my port. If I feel any odd sensations they can stop it immediately before I instantaneously combust. :)

After chemo I will have a radiation simulation. They tightly secure me in a big bean bag that conforms and molds to every crevice of my body. It makes a mold and some fancy schmancy computer application creates Cathy #2 that will be used to guide radiation. They told me to take Ativan. It's not for the claustrophobic, which thankfully I am not.

I've gone 36 years without any marks on my body and within months I've acquired my oh so beautiful port scar and now I'm getting tattooed. That's right- permanently tattooed. I thought they were temporary! They're going to mark up my radiation field with black dots...down my neck, mantle and chest. I asked if they could make them into butterflies but they said there was an extra charge.

They try to limit the radiation field as much as possible and that's why everything is so precise. It's very different than radiation from even 10 years ago. They key is to limit lung, heart and breast involvement as much as possible to minimize the growth of secondary cancers in those areas. I can't imagine how things will change even more in the next 10 to 20 years.....

I will go EVERY. SINGLE. DAY. for four weeks. I'm not sure how we're going to work that just yet but it will get done. The machine is tight and you're basically pinned in it- again for precision. They think I may be able to forgo the horrible, horrible face mask I've heard about so I'm happy about that. We'll find out for sure as we get closer.

Of course before radiation begins I'll get scans to see if the cancer is gone. If it isn't the whole plan changes. We're drawing up plans under the assumption that the cancer will be gone!!! :)

I'm looking forward to radiation. Strange statement, I know. Radiation means I'm done with chemo. I'll take it.

To the friends that gave me the Target gift card... I applied it toward a new hat and a tricycle for Noah! I'm very excited about that. I knew you'd yell at me if I spent it all on my kid. When I can get him to understand the concept of pedaling I'll post a picture. Right now he's still scooting.

Thank you all for the offers of help and support. Happy Cinco De Mayo!

Been a while

Let's dive right in.

Mouth sores bite. I'm not sure if the Nystatin has lost it's efficacy or if I'm doing something wrong but my mouth is in shambles. I'm eating what I can but feel like I'm on an adult baby food diet, smashing up bananas and drinking only water or milk. Hopefully the thrush, sores and pain will clear up soon. The body aches and random, continual shooting pain are welcome to depart any day now.

Treatment #4 went pretty well so I was hoping I'd sail through my second half. Treatment #5 went fine but I've been paying for it since Friday. It will pass.

Daniel and Noah were a bit under the weather this weekend but I was determined to drag myself to church. I got there alone and the sermon was on HELL. Now, I don't go to church for a feel good message and someone to tell me how wonderful I am. I realize the point is to worship. But I had to chuckle at how crappy I was feeling along with the heaviness of that message.

Out of hundreds of people our pastor often finds one of us to see how we're doing. One time he asked me what I thought of his preaching and I stammered something like "You're blunt. I like it."

That's all. I haven't asked Daniel about it but he must have been thinking...."You can rattle on about the weather endlessly but you muster up 'You're blunt, I like it?' By the time we got to the car I thought of sixteen other things I should have said. I find myself mildly disagreeing with (very minor) things occasionally and then I have to go home, get out a concordance and dig around the scripture from that week's sermon to see if he's right. That's probably his whole goal.

I've got a lot of things to do around the house. I bought a watermelon and I think it would go down the chute ok. I just can't bring myself to cut into it. Maybe tomorrow. If you haven't tried it, use an ice cream scooper to hollow one out. I'm no Martha Stewart and that's probably pretty basic, but it's a lot quicker than using a knife!

Laundry will have to wait as well. I know I'll perk up soon, and it will all be there to greet me when I do. :)

More details on #5 and the consultation with the radiation team later....