A different kind of grief...

Holy cow! I can't believe it's been over a year since I've blogged. Here at least...

I'm still around, in case you were wondering. I've received some comments and emails asking if I was and thought it was awful nice of you to care enough to ask, so the least I could do is respond.

Early last year, January 1st to be exact, stuff happened. My mom suffered a really bad stroke that left her unable to speak and move very well. On top of that, an x-ray done in the ER revealed a large mass in her lung - Stage IV lung cancer.

My mom was in the hospital for two months, just trying to get her well enough to get to a rehabilitation center. Halfway through, we were hopeful as she had started to walk with the aid of a walker and assisted by medical staff.

Hospitals are funny places. Not funny as in "ha-ha" you made me laugh. Not funny like that at all. Funny in the way that you are in great danger the sicker you are and the longer you stay in one. "Super Bugs", resistant to antibiotics and other treatments, are life threatening to patients with weakened immune systems. My mom was one of these patients. While in the hospital she contracted at least two separate cases of pneumonia. The stroke had severely impacted her ability to speak... and also to swallow. When you added in the obstruction from the tumor in her lungs, it was a bleak scenario. She just couldn't cough out the bad stuff and never recovered.

Cancer. Hit me harder than it ever had before. I lost my mom on February 26th, 2011 - just two days before what would have been her 41st anniversary with my dad.

For anyone who knows me, you know I stayed very positive through my diagnosis, my treatment and through my check-ups and remission. Sure, I get anxious for test results and maybe I am more nervous than I was before - but I'm not sad, angry or physically down about my own bout with cancer. For those of you who don't know me, you might have commented that you gather that from reading my blog.

I've had some fucked up things happen in my life. Three of my nieces, ages 7, 8 & 10 were murdered in 1999. I was diagnosed with Stage IIIB Colon Cancer at age 36 in 2008. I lost my house due to Cancer and all the fun parts of dealing with a medical condition like this in 2009. But I always knew that these kind of things didn't just happen to me. Everyone suffers. Everyone has dealt with their own tragedies, or if not, they probably will at some time. And if they don't ever, then Praise God! I'd never wish harm on anyone. My point is, somehow I managed to keep that positive attitude to all of my own... until mom.

It was a whole different kind of grief and eventually loss and more grief. I tried to do everything I could do to be there for her and help make decisions for her care, but in the end, we still lost her. No positive outcome. No more hope. I was angry. I was sad. I was lost.

It's been just over a year since my mom had her stroke. I honestly don't feel as angry and hopeless as I did back then. I'm still grieving and I miss her, but I'm able to look for some positive through it now; The best thing - we got to say goodbye. I don't know why my mom started to get better for the one month before it got so bad, but she did. And even though she couldn't speak to us, she communicated. She told me that she loved me in her own way and I'll always have that as one of the last feelings to have shared with her. And if I allow myself to look, I often find bits and pieces of other good too. Like the way mom always taught us that life goes on. We cannot stop living due to our grief. And how better to honor that lesson than to not only go on living, but live life to the fullest and appreciate that we still have time her with our loved ones.

So where does this all come from? Besides being what my life has been about for the last year? Well, for one - I was blogging, just not here. I found this blog to be so great for documenting not only what I was going through at the time but also a great way of communication for anyone who cared to know what I was going through, that I ended up creating a separate blog for my mom. Although, I haven't posted on that since her funeral last March. For two - It's another instance of how cancer is affecting my life and of how fucked up it can be. And how I said at one point "I reserve the right to breakdown in the future..." I brokedown. Just not exactly how I expected it to come about. Three - if you smoke - QUIT! That shit is nasty and it KILLS! I can't believe my mom hadn't had a chest x-ray sooner. I can't believe I never urged her too. It's too late for her, but if you know someone who smokes, maybe you can at least encourage them to ask their doctor's for one. It could very possibly save their life.

That said... I am fine, healthwise in relation to cancer. I missed my 3 1/2 year check up so had a 3 3/4 year CT scan on November 13th. Results were good. NED. No evidence of disease.

Sorry for being away so long. I guess just 'cause I'm super pissed at cancer, it doesn't mean I need to take it out on my blog...

And whadaya know. The world just keeps spinning...

Had my check-up today and met with Julie and Dr. C. Geez those people are sure nice at the RMCC - all of them. Hmm, so..... I had my CT scan at the end of September, so that was about 1 1/2 years from my surgery. Lookin' good. That's the word anyway. Doc says there is no evidence of the cancer having spread. *whew* Not that I thought it had, but still - good to hear. Good. To. Hear.

Next check-up set for mid-February. Just short of my two year "birthday".

I also met with the Genetic Testing Counselor. She doesn't feel like my family history screams that my particular case was due to genetics. Not ruling it out, she says testing wouldn't hurt. The thing is, tested or not - not matter what the results - my family would still be urged to test at the very latest, 10 years prior to my diagnosis (so at age 26). If the testing came up to positive, then testing would be even sooner. Maybe age 20. Yikes.

I told her I would think about it. Probably won't do anything right now for financial reasons more than anything. Maybe next year when I am starting out brand new racking up my Maximum Out of Pocket Expenses. Heck, they still haven't even billed me for my CT. I can't wait to see that one. Kinda shady if you ask me - this whole new insurance business. I have not had much fun with it. At least with Kaiser I knew how everything worked and, for the most part, I knew how much it was all gonna cost. They (insurance companies) sure know how to get you when you're down, don't they.

Speaking of being down...
My friend Cindy K. Not doin' so well. She had a bad reaction to her first round of chemo and has been in the hospital for a few days. Send extra prayers and good vibes in general her way please.

*Benign * Benign * Benign * Benign *

I got the pathology results back and it's good news.

The mass found was as the doctor had thought - a buildup of tissue from the original surgery.
*Benign * Benign * Benign * Benign * (see post 01/23/09).

He says I'm supposed to come back in three years. Dr Azar might say sooner. Man, I hope not...

The prep IS worse than the procedure...

So guess what I did today? I had my first colonoscopy...

I can honestly say what they say is true - "the prep is worse than the procedure". And it will probably surprise you to know, what I mean by that - is drinking almost a gallon of a salty-lemonade tasting drink was the worst!

I went in at 8am and was getting ready with the assistance of my nurse, Anne. She talked to me about her young cousin who is dealing with cancer. She said that she liked seeing a patient like me who has dealt with it and is in such good spirits. I had to look around and see if she was talking about someone else, cause I didn't think I was in that good of a mood. In fact, I felt pretty grumpy - after not eating for a day and a half!

I was alert enough through the procedure to see some of the work the doctor was doing. And afterwards he showed me the results. Good news is, there were no new polyps found. However, there was a growth that he thinks might have been a scar buildup from the reconnection of the colon when they removed the portion that included the original tumor. Hope that makes sense... The growth will be sent to pathology and I will update when I get the results.

As of now, my next step will be to get a CT Scan in March. And then I will have an appointment with Dr Azar to discuss all the results.

Oh yeah, I forgot to mention... Nurse Anne came in and said, "I don't usually do this, but I want to give you a hug" and she said she wished me well. She also said that she was glad that I was her first patient. It was a great way to set the mood of the day. How nice is that... :)

good... in case anyone is wondering

Pathology results are in. The mole that was removed at my 1/15 appointment was found to be benign.... which is good in case anyone is wondering.

Benign Be*nign", a. OE. benigne, bening, OF. benigne, F.
b'enin, fem. b'enigne, fr. L. benignus, contr. from
benigenus; bonus good + root of genus kind. See Bounty, and
Genus.
1. Of a kind or gentle disposition; gracious; generous;
favorable; benignant.
1913 Webster

Creator bounteous and benign. --Milton.
1913 Webster

2. Exhibiting or manifesting kindness, gentleness, favor,
etc.; mild; kindly; salutary; wholesome.
1913 Webster

Kind influences and benign aspects. --South.
1913 Webster

3. Of a mild type or character; as, a benign disease.
1913 Webster

Syn: Kind; propitious; bland; genial; salubrious; favorable
salutary; gracious; liberal.
1913 Webster

Owwwwwwwwwwwwwwwwwwch! That hurts!

I guess going to the Medical Center every other week isn't enough for me, so I took a trip there today...

My upper arm has been bothering me since I had my PICC line installed just over a week ago. It's been a dull but constant pain increasing each day and although I could deal with it if I had to, it still hurt. It wasn't so fun to sleep with it either.

I didn't want to call in cause I was afraid of what they would say... like maybe "come in, we might have to take it out." But I thought, it probably shouldn't be feeling worse than when they put it in, so I called. They said "Come in, let us check it out. It's probably just an irritation in your vein, but we want to make sure there aren't any blood clots."

I went right in, got there about 12:45. Dr Azar said she could see some redness and that it shouldn't be hurting. She (and nurse Julie) ordered an ultrasound. Julie really worked some magic cause they said they didn't have an appointment until 3:30pm and when I went down to Radiology, they said they didn't have anything open until the 9th! But it all got straightened out and I was seen by 2pm.

It was coming up to 4 o'clock and I had to head out for a Parent Council Meeting at Darren's school, so I asked if they could change my dressing and I could check back for results. We optimistically hoped that no news was good news. Julie tracked down Dr Azar just before I was getting ready to leave and just AFTER Lisa had changed my dressing.

Results....
Apparently I was starting to get blood clots (not a good thing) and they had to pull the line. Argh... I just smiled and said "okay". Ya have to do what you have to do right? Dr Azar said I might need to get another Central Line (in my chest). I just am not sure how I feel about it. It seemed a bit easier than the PICC as I had an extra hand to use... but it's surgery.... and a $100 co-pay vs the $20 co-pay for the PICC line! But a PICC line in my right arm? That doesn't sound so fun either. Awe, whatever. For now, I have to take aspirin once a day until I hear back from Oncology. They will let me know what I am scheduled for.

Good news! No co-pay today! Yay!

Oh yeah....

Oh yeah, staples were removed yesterday and all seemed fine. I got a pathology report on my tumor too - but it doesn't really make any sense to me. That's okay, looking forward to discussing with my Oncologist, Dr Azar.

BTW - The dimensions of it were 5 x 3.5 x 2.3 cm.

The C-Word

Starting Wednesday, I spent most of my time in the visitor's waiting room. We kind of took it over the whole time we were there because I didn't want to disturb any of my roommates and there wasn't a lot of space for visitors in my room anyway. Also, the doctor's wanted me to be sure to get up and walk around, so it was easier for me to do this from the waiting room. Plus, there was a great view from there. Too bad, I didn't take a photo.

Anyway, when I finally got to my room on Wednesday evening, I found I had a new roommate. Vanessa came in with a complication after a surgery she had a couple weeks before. Her mom Linda was with her. They talked to me a bit through the curtain. Asked how I was doing and all. Linda ended up staying the night, sleeping in a chair next to her daughter's bed.

So, Thursday was the day. I thought I had pretty much prepared myself to hear the results, but I don't know...

I was anxious about it. Woke up at 4am - I wonder what time Dr Vaughn will be here. Another doctor came in to check on me early in the morning, maybe about 6am. He said that they should have my results today, but didn't have any other information.

Dr Vaughn came into my room at about 7am. I had fallen back to sleep and the room was dark. I opened my eyes as Dr Vaughn leaned over my bed and asked me how I was doing. Again, this is how I remember the conversation, which might be completely out of whack.
Dr V: Well, we got the pathology report and there is cancer.
Me: okay.
Dr V: There were 20 lymph nodes and one of them was cancerous.
Me: okay.
Dr V: What that means is I will give you a referral to an Oncologist and they will likely administer chemotherapy. It looks like we got the tumor out completely and I didn't see any other masses. But there is a lot of inflammation and you will need to follow-up to make sure it doesn't spread. You will also want to let your brothers and sisters know that they should go in for a colonoscopy as they may be at risk.
Me: What does that entail, chemotherapy? Will that be during my recovery, after? More time off? Am I going to lose my hair?
Dr V: There are so many types of chemotherapy. You'll need to discuss with your Oncologist the what's and when's. You'll need to do some healing with this surgery before you can start that.
Me: okay.

He walks out and I sit there, with just a dim light above my own bed. Not sure what I am supposed to be thinking. Not sure how I am supposed to be feeling. I have cancer. I don't feel like I have cancer. But I'm pretty sure he just said I have cancer.

Kim, my awesome nurse walks in and asks me how I'm doing. "I got my results back." "And, what were they?" "The tumor was cancerous." And I start to cry. "I don't know what I'm supposed to do or say." She comes over and hugs me and says, "It's okay. Do you want me to call your mom? You should have someone here." "No, I don't want anyone here yet. I'll call my brother." And then Linda comes over and gives me a big hug too. People can be so nice. They don't even know you, and they can care about you right at the time that you need it most.


I call Mondo and tell him I got the results. He asks if I want him to come over. "Um, I don't know. I want someone to tell mom. I want her to hear before she gets here." I can't imagine what her reaction will be. How would I feel if someone told me my child had cancer? No matter how I feel about it, I can't expect that her feelings will be the same. I call Karen and Mario too. And give Karen a list of people to call and give the news to. Mondo will call the others when he gets here. I just want to make sure that people who might stop by to visit, know before they get here.

The rest of my stay is completely uphill. More visitors, more cards, more calls, more emails, more prayers - and yeah, more flowers. I am completely immersed in love. I am not stressed or angry or bitter. I don't think life is unfair. I just am. I am happy to have all of these people to keep me company at this time. I spend alot of time laughing - and it hurts to laugh, but at the same time - it feels so good to be able to laugh.

The Big Day - Part II

When I woke up in recovery, it was to a lot of pain. I was trying to move and figure out where I was and what happened. I was reaching out, I don't know what for - and crying... and asking "what time is it?". Where is everyone at? Did they leave me? I don't remember how long I was in there, or what order things happened in, but they adjusted my medication and the pain lessened enough for me to get ahold of myself. After some period of time, I was able to move to my room.

Mom & Dad, Mondo and Mike Norris came in to see me. They stayed through the whole surgery and recover time.

It was such a blur. Dr Vaughn came in. "Not diverticulitis... Removed the tumor... Sending to pathology... should get results in two days... possibly cancerous... oncologist... chemotherapy..." What?

My evening continued to be a blur. More visitors. I'm sorry, I know I wasn't able to have coherent conversations. I probably tried. I remember talking to Sammi and I think I probably dosed in and out, but she said that if I lost my hair through chemo, she would shave hers off too! God love Sammi and so do I! Kristie had brought Darren back - she had picked him up while I was in surgery and taken him to the zoo. I really don't remember what happened that evening. All I know is that it was just the beginning of such an incredible week. I had so many visitors. So many calls and emails and messages of "we're praying for you and your family." AND, lots of flowers and goodies too!

Did he say "possibility of cancer"?

Thursday, March 20th was supposed to be my last full day of work before I was going to take a couple of vacation days and then go out on short term disability for the surgery. On Wednesday, March 19th - in the evening, my abdominal pain came back - with a vengeance. I didn't know how I was going to make it to work, but there were a few things I had to get done. Ugh.

Right away, I edited my vacation response for email and recorded my voicemail. I closed up open issues and I think just in time. I had to leave. I was in tears. Called Dr Vaughn's office, who immediately sent another prescription for some more antibiotics. Had Mario walk me out to my car and managed to drive myself to Kaiser to pick up new meds. Went home and spent the rest of the day and the next vacation day in bed.

Dr Vaughn called me on Friday, March 21st to see how I was doing. This is how I remember the conversation, it is definitely not word for word.
Me: A little better. It seems like the meds are working pretty fast.
Dr V: I got your results from the (Pre-Op Procedure) and there is an abnormality. If you were older, I would be concerned of the possibility of cancer. The technician would like for you to come in for an Endoscopy, but I don't think I want to put anything into your body right now to risk a (lesion?). I don't want to risk the infection. I recommend we stay on schedule with the surgery.
Me: Sounds good to me. Did he say "possibility of cancer"?

Allright already - Part II

So I call into work and let my boss know that this is going to take more than a couple of hours. I was referred to the ER and I might not be back in. But everything is okay - just a financial consideration here. Did I say that more to ease her mind... or mine?

As I'm driving around Saint Joseph's looking for ER parking, I start to think to myself that isn't it kind of strange to be driving yourself to the Emergency Room? Something about that doesn't seem right. I found parking though, and it was pretty convenient.

When I'm seen by the triage nurse, I tell her about my morning at Kaiser and how my doctor had referred me over for a CT scan. She isn't the warmest person and proceeds to tell me that my symptoms would indicate a UTI or maybe an ovarian cyst, in which case they wouldn't do anything about it.

NO!!! In that case, let me make up some symptoms. Anything to be seen by a real doctor who will take the time to figure out what is going on. I don't care if it's OB. I don't care if it's GI. I just want to know!

Either way, I'm sent out to wait until there is an exam room for me. Thank God that when I am called back, the nurse I get is really nice and seems to ask me questions that pertain to my hurt, rather than to something else I don't have. The doctor comes in and lets me know that they are going to send me up for an ultrasound. And I get an IV and some pain meds. Thank you!

The ultrasound technician (also very nice) says "yes, there is definitely something there. I can see why you are in pain. Twenty years and I've never seen anything like it. I don't know what it is." Umm, are you really supposed to say those kinds of things out loud? But I look at the screen as she points out "This is your ovary, and right here - this is a mass, that is probably what is causing your pain. And on this side, your other ovary." She'll need to do another - really in depth and really uncomfortable ultrasound. Lot's of photos later, she says she will go and review with the doctor and see if they want to come in and give me an exam as well.

I call my mom. I was thinking, Darren was supposed to be going to winter camp this weekend and I might not even be able to say goodbye cause I am tied up in here. I thought I would get the fasting lab done today, I didn't expect all this. And, Bethany had organized a birthday dinner for me at Hibachi Grill! I wasn't even sure I would make that. Well, I tell my mom where I am at and that they found something. Not sure what it is yet. And I start to cry a little bit. I don't know why. It wasn't because I was scared. But I think mostly because I was so relieved that they finally found something! I was emotional about it, but it was such a relief. She asked if I wanted her to come meet me since I was alone, but I didn't want her to. I just asked her if she would make sure to get Darren off to camp, pick up a few things I had forgotten and tell him I said goodbye if I wasn't able to call in time. And I told her I would keep her updated on what was going on with me.

After my ultrasound, I'm told I will be sent for a CT scan. Awesome, that's what I'm here for. The pain meds are wonderful, but I am unable to eat or drink anything and I am soooooo thirsty. After the CT scan, I wait for the doctor to come back in. And I wait. And wait. When she finally does, she tells me I have diverticulitis and the pain is from an infection in my large intestine - an abscess to be exact. Surgery is recommended to remove that part of my guts. Okay, those weren't her exact words, but you know.. More waiting, I thought to find out when I am going to have the surgery. She made it sound like it would happen that day. Definitely no food or drink. What time is it? 2pm or so? Then a surgeon comes in. Dr Vaughn. He again explains the disease (diverticulosis) and the complication of the disease that I am experiencing (diverticulitis). Oh yeah, the CT scan also shows that I have gall stones, so they would like to remove my gallbladder while they're in there. Okay. So I thought that I was waiting to go into surgery, but I think we were waiting for the surgeon to get the blood work results back. He wants to admit me to the hospital for a few days to give me antibiotics intravenously. The surgery shouldn't be done until the infection and inflammation has healed up. Oh man! No Hibachi Grill tonight.

But, I can have a 7up.