Can I quit?

I don't want to do this anymore. 

I'm embarrassed to admit this... but I'm going to because I want to be honest. I melted down this morning. I couldn't muster the energy to walk Little C to the bus stop... I felt horrible physically and mentally. I looked out the window at her walking down the street alone and burst into tears. I felt sorry for myself. I was super angry. I'm sick of this. I don't want to go through another 5 shitty cycles of this. I don't know why this is happening to ME. Why? Blah Blah Blah. 

I went back to bed with my iPad and read my email, FB comments and blog comments and cried for another 1/2 hour or so. Took some more Tylenol and stomach acid reducer. Got up at 10 a.m. got a long warm shower, dressed and went to work packing and shipping orders. I needed something to focus on. Little C had half day and we made some lunch together, Tilapia Filets and Quinoa. My stomach felt a bit better today, with the exception of hiccups from hell still. 

I don't want to be the brave one. Or the strong one. I just want my old life back. I hate that I am putting my family through this. I'm just tired and depressed and want to quit. I hate that I don't really have a choice. I have to get through it. I don't really like the alternative, ya know? 

Thanks you everyone for your strength and kindness and prayers. I will make it. 

I'm hoping tomorrow is a better day. 

Kicked in the Head

That's how I feel today. Like I got kicked on the back of the head. I took a nap sitting up on the couch because it hurts too much to lay down. I don't know if my neck muscles are just screwed up from sleeping funny, due to the pain of the port incisions. So far the Neulesta shot hasn't settled in any major bones. But then again... my neck and head kind of feels like all my glands are swollen like when you get the flu. Hmm. 

I had a hard time eating again too. I'm hungry in the morning but I have to make myself eat lunch, and by dinnertime I'm just feeling icky. And this hiccuping is making me crazy! Every time I drink something I end up hiccuping for a few minutes. Or when I eat, my stomach does this weird one big hiccup/heave. It feels like everything just wants to come back up. But I'm not nauseous. Definitely something to talk to the nurse about next week. 

I had grand plans for exercising lightly during my ordeal. I walk the kiddo to the bus stop with the dog and go a bit further and home again. That's about all I can handle. We had our first snow fall today and it's usually my job to shovel the driveway. There's no way. I am extremely grateful that my neighbors stopped by (without my asking or prior knowledge) and shoveled the driveway. 

I also had an appointment at the American Cancer Society's wig boutique. How depressing to look in the mirror and not see yourself staring back. They also have a program called "Look Good, Feel Better" about how to take care of your appearance when going through treatments and feeling like crap. They teach you how to take care of your skin and put on makeup - when you know you look good, you feel better about yourself. I missed the January class which was this past Monday. Next class is the first week of February. I'm trying to take care of myself. I washed my hair this morning (first shower since surgery Monday!) and put on a bit of makeup, real jeans and shoes, etc. It really does make you lift your chin a bit higher and feel like hiding a bit less. I'm trying...

I wanted to share an article written by David Haas, Family Hospitality Coordinator at Mesothelioma Cancer Alliance. It applies to any kind of cancer. It's about "the benefits of fitness and eating healthy during and after a diagnosis of any kind of cancer. Each cancer has it's limitations, but if one can keep a healthy body, they can have a better chance to overcome this awful disease." Hmm. It sounds like he's been rooting around in my brain the past few days... 

Stay In Control of Your Body

Surviving cancer is an exhausting process, and though there is a great deal of
emphasis placed on recovery, you should also be thinking about control. After
going through mesothelioma or any other kind of cancer, you may feel as though
everything is out of your control. Reasserting a feeling of control in your life allows
you to stay positive and motivated during your treatment and your recovery, and it
can also drastically improve your outlook on the way that your life is going.
According to Dr. Matthew Hoffman at WebMD

Studies show that not only can exercise prevent cancer, but that it can also prevent
it from recurring. Exercise gives you an opportunity to use your body and to make
it do work. In the process, you will be releasing endorphins that give you a natural
high, and you will also be helping your body recondition after what might have been
a long rest period. Choose a form of exercise that you enjoyed before your diagnosis,
or learn a new activity that you have always wanted to try. Always consult with a
doctor before starting any new exercise regimen.

Another way to take control of your body is to focus on your grooming. Cancer
treatment is a highly stressful time, and you may have been doing the bare
minimum for a while. Go to a spa and try a full body treatment or simply take a few
small minutes out of every day to pamper yourself. Even painting your nails can
have a positive effect. Baby your skin, paint your nails, or accessorize your favorite
outfit in a new way.

Spend intimate time with your significant other. Sensuality is another thing that
might have been pushed aside during the stress of cancer treatment, and it may be
a thing that is hard to reclaim. Speak frankly with your partner about your needs
and how they might have changed or been altered. While speaking about intimate
matters may be awkward or uncomfortable at first, it can also be liberating to talk
about your body in a way that is unrelated to cancer. It establishes you as a sensual,
sexual person.

If you are recovering from cancer, it is time to make your body your own once again.
Take control of your body and remember that it is a part of you and that despite
your illness, it is still a beautiful and important thing.

Thanks David. 

Hopefully tomorrow will be a better day. I did find my Norco prescription so tonight should be a better night. A good night's sleep can make a big difference too :-)

Blurry Brain

Cycle 1 Day 2.
I thought I had a few days before the side effects hit. I hope I'm not in for a big surprise... woke up today feeling a bit blurry in the brain. Not nauseous, not dizzy, just a little light in the brain. Hard to explain. I've been trying to pay close attention to my body but sometimes things are hard to describe. Like my tongue. It feels weird. Like I drank a hot beverage but didn't quite burn it. I also had a face flushing episode where my face turned bright red and got hot. It went away after about 20 minutes. I pretty much lost my appetite as well. It's much harder than I thought to force myself to eat. I had a Trader Joe's Slice of french toast with agave nectar syrup this morning. Around 1:30 I forced a mini bagel with peanut butter down the hatch. A few hours later I had a greek yogurt. At 7:00 I had a bowl of Wonton soup with vegetables from Whole Foods. Not a whole lot of food... but ick. Everything just turns me off. I didn't even manage my 8 cups of water... I counted the soup as one cup and still only came to 7. The weird thing is... I had the hiccups all day! Every time I ate or drank something I got the hiccups and it felt like it was gonna come right up again. And heartburn... much worse than normal. Hello Tums. I think I need to go back to plain water, I tried flavoring my trough with Vitamin Zero water, I think even the Stevia was too much for my stomach to handle. Back to water...

And then this evening my neighbor/friend Amy came over to see how I was doing and dropped off an uber-cool stainless steel water bottle... to remind me to drink my water and look cool doing it. It was very sweet, and perfect timing. She is an inspiration, being a long term survivor of Hodgkins Lymphoma. Thanks Amy!

I did get my Neulesta shot today, right in the belly fat. IF I get side effects they will hit me tomorrow with bone pain and flu-like symptoms. Oh Joy. I have an appointment at the American Cancer Society wig boutique tomorrow and we're expecting our first snow of the season :-( But the worst part of today? I LOST my Norco prescription! I put it in a Very Safe Place yesterday. I remember folding up the letter size sheet so it was the size of the script. I thought I stuck it in my calendar, which I carry with me... or my notebook/journal... it's NOWHERE to be found. I don't even remember which doctor prescribed it. Can I blame it on chemo brain already??

Let the games begin

 
I found this cool pendant in an etsy shop. Click to see.

Cycle 1, Day 1

This means each "cycle" consists of a start of all three drugs on the 1st day (for me Jan 10th), and just one drug (H) on the 8th day (Jan 17th) and one drug (H) again on the 15th day (Jan 24th). Then Cycle 2 (TCH) starts again after 21 days of the start, also known as Day 22 (Jan 31st). Lather, Rinse, Repeat. Whew. I just have to remember to look at my calendar, remember to go on Tuesdays and follow directions. It's seriously like learning a new language. 

Anyway, as other people have told me, once the first time is over, it gets MUCH easier. Now I know where to go and what to expect. I think I did pretty good. No tears at least. Soo much information to retain though. Mostly about controlling side effects and when reactions and side effects are expected to reoccur. The head nurse said that it could be as long as 3 weeks before my hair starts seriously falling out, probably completely by 4 weeks. JUST IN TIME for my birthday on February 10th! Up until then it just starts thinning out. I swear my scalp feels tighter already but it could be just because I'm thinking about it. (Psychological, you know like when you see head lice on TV and your scalp starts crawling in response? LOL) 

I pretty much sat in a lounge chair for 8 hours straight except for bathroom breaks. They were able to use the port after poking and prodding my tender swollen skin. I sat for 90 minutes while the Herceptin dripped in, then had to wait an hour with nothing but saline to gauge any reactions to it. I was fine, no reactions whatsover. Then they started the Taxotere for 60 minutes. No reactions during infusion. Finished off with Carboplatin for another 60 minutes. Again, no reactions. It was pretty boring and tiring because I got about 3.5 hours of sleep the night before. Apparently steroids "wire the brain" which was exactly what happened last night. I actually found a comfortable sleep position but my mind was wide awake. Probably some nerves involved too... 

I feel fine tonight. Just tired. I'm glad my little sister was there to keep my company and keep my mind off of what was happening.  It was probably pretty boring for her too, but the next "big day" infusions should be 4-5 hours instead of 8, which will help. I feel guilty taking up so much of her time, but I'm not going to turn her down if she offers to keep me company! 

It's strange not knowing when "side effects" will start... I have to be very conscious of my body and mind and write everything down. The nurses suggested keeping a food diary as well. I'll start that tomorrow since it will look pretty bad when I say I had Oberweis peanut butter chocolate ice cream for dinner! Heck, I think I deserved it! I chased it down a few hours later with a protein shake/drink, so there. 

My port site is pretty sore, especially after the nurse took all the sticky Tegaderm tape off. That's that clear tape they put over IV sites and over small incisions. My body is NOT liking adhesives right now. The tape left raw blisters along the edge line and very angry red irritated skin underneath. It also happened last week when the SAVI device was removed from my right breast,  the steri-strips caused raw oozing blisters that are finally healed. The blisters hurt more than the actual incisions. The good news is that I DON'T have to wait 5-7 days to take a shower, I can shower on Thursday already, whooopeee!


Tomorrow is a Neulasta shot to help my white blood cells rebuild themselves. It's not a shot in the arse, but rather subcutaneous fat in the belly. I got a lot of that to offer!

Puttin' on the ass kickin' boots

On Friday, after the failed port placement, my doctor made an appointment for me on Monday to have Interventional Radiology put in the port with fancy x-ray equipment. At 1:00 Monday. Ya hear me? They made an appointment for me at 1:00 MONDAY. At 12:15 on Monday the IR department called and said that the Medical Oncologist still wants the port put in and she wanted to schedule it. HUH? My sister, who was sitting across from me, gave the phone the stinky eye and her fighting feathers got ruffled. Which gave me the little push I needed. I told the poor girl on the phone that I already had an appointment for the port placement. She said I wasn't in the system for today. I said "On Friday the appointment was made. I am going to be there at 1:00. The port WILL be placed today." Silence. Put on hold. She came back and said they would find the paperwork (that wasn't filed apparently) and that they will "squeeze" me in and I should still come in at 1:00. Bet your sweet ass I will.


I was there at 1:00 and they got me in right away. They saw I wasn't pleased I guess. It felt good to stand up for my rights as a patient. At about 2:15 all the IV's and electrodes and monitoring stuff was ready, paperwork was finished, bladder was emptied and I was off to the procedure room. I emphasized the fact that although I weigh XX pounds I don't tolerate drugs well and "Less is More". Well the nurse did a great job. I was conscious and alert throughout the whole procedure. Which may or may not be a good thing. I never had that "drugged out" feeling afterward, I talked to my husband about 10 minutes after arriving back in recovery. But on the other hand I heard EVERYTHING the doctors were saying. And the tunneling through the skin reminded me of those pictures you see of doctors doing liposuctions. Jam that tube through the skin to break the connective fibers. Ick. 


My neck hurts. The incision area is still fairly numb, but my neck muscles hurt from having my neck facing the side the entire time, and not being able to turn my neck now because this tape is so darn tight. And they said I can't shower for about 5 days? HUH? I had no showering restrictions after Friday's mishap! Gah. Here's a picture of afterwards: 

The top incision is really close to my trachea, which feels pretty bruised from the doctor pushing on it to move the catheter further down. I didn't know the jugular vein was so close to the front of the neck. Yes, they had to go up through the skin to the jugular vein, then thread it down to the sub clavicle vein and down towards the heart. Apparently I have naughty veins. And a blue neck and chin. 


Tomorrow is the big day. (First Chemo session) I just want it over with. My most excellent sister is going to drive me and stay with me the entire time. Hopefully we can get a few laughs throughout the day, like we did today. Laughter IS the best medicine.

Vampire Acess

I have been poked and prodded so many times I've lost count. I look a little like a drug addict, with bruises up and down my arm. My veins are hard to find, especially after having to fast before the surgeries. I have 3 new scars on my right breast, one in my armpit, and now one below my collarbone on the left side. Hopefully today they will place the port in the same incision so I don't have to be cut open in a new place. I know the port placement is a necessity at this point (although the doctors keep telling me, ultimately, EVERYTHING I do is a choice!) Well, yes, I'd rather you didn't blow my veins up every week, thank you. 


Yeah, I said every week. My chemotherapy regimen (TCH) is weekly, with both chemo drugs and immunotherapy drugs. I have 18 weeks or 6 sessions of the nasty crap. Tomorrow I start the 5-6 hour session with Taxotere (T), Carboplatin (C), and then Herceptin (H). That is once every three weeks. The weeks in between I go in for the (H) only. After the 6 sessions with (TCH) I can move on to getting the (H) every three weeks so it equals an entire year. Before each session they need to draw blood to get Complete Blood Counts and other type tests throughout the period of time. 


Trust me, I understand why I need a port. But it still leaves me shakin' with the willies. I mean, they're going to cut me open and insert tubing into my jugular vein and then connect it to a button for easy access. If I'm going to make my lifeline of blood so available, it should at least be attached to my own handsome vampire! Bah, life's not fair!


I'm off. Fingers crossed it works this time!

How did I get here?

I wasn't going to start a "cancer blog". I am a mixed media artist, an art journaler. But I've found cancer gives me no art to work with, at least nothing I can put into images right now. I started a journal, but find it a chore to write in it, my fingers can type much faster, my thoughts can pour out quicker than the hand can write with a pen. This blog is mostly for me right now. I find the need to keep records. To document my life. Right now it's for me, but maybe someday I can help someone get through what I must go through and then it will have some worth. 

I have Breast Cancer. (Never in my life did I think I would ever say those words.) The past few months have been a blur, a roller coaster of emotions, the highest highs and the lowest lows. I wrote about it on my Artist blog HERE. Sometimes I stop in my tracks and it hits me- "how the hell did I get here?" 

• October 19th-routine mammogram during Breast Cancer Awareness Month.
• October 28th-Another mammo and ultrasound. I knew by the way the nurses treated me that it wasn't good. 
• November 3rd-Biopsy with Advanced Breast Care Specialists
• November 8th-The phone call "I have bad news. It's cancer." 
• Tears, depression, anger, fear, disbelief, sadness, UNREAL. 

Here's the medical speak, a previously unknown foreign language: It's a 2 cm tumor, grade 3, ER+, PR+ and HER2+. A node biopsy was clear. But it's fast growing and "triple positive" and "worrisome" whatever the hell that means. We do surgery, radiation, chemotherapy.

I've had an MRI to make sure it hadn't spread (it hadn't), a lumpectomy to remove the tumor, a re-excision because some margins weren't clear, a high density radiation treatment for five days called brachytherapy... and here I am today, almost ready to start chemotherapy on January 10th. I say almost because my port placement was a failure on Friday so tomorrow I have another surgery where the radiation department will try to place it.

I am completely freaked out about chemotherapy. All my life I've been terrified of the whole concept of putting toxic chemicals in the body to kill both good and bad cells. Of course I never thought it would happen to me. I'm the healthy one, remember? I don't even like to take tylenol for a headache!

So here we go. This is the story of my journey through Cancer-land.